Living in pain half my life has taught me how to advocate for myself. I have learned how to find the good doctors who are knowledgable in RSD and SCS. When I was working I had to learn how to fight for my rights and I learned that there are some battles you cannot win. I have even learned how to publicly advocate for RSD to promote awareness. I guess learning to advocate for myself was a lesson in life to prepare me to advocate for my children.
Learning how to advocate for my child's best education is something new for me. I have to guard my body against the stress of the situation so I don't end up with a flair, I am not doing well in that department. My children come first so if I need to fight for them while I am in pain then so be it. I have already made the first mistake in advocating, I led with my emotions. I am human and I am their mother so I do have an emotional take in what happens to them.
What a year this has been! 2012 saw me with my fathers health issues and my own colliding at the same time we began Early Intervention for Lucas' speech problems. In September 2012 a new school year started and soon enough it was announced that Gabriel was struggling for the first time in school. 2013 began with both boys having evaluations. My father and I are both on the mend. Now both of my boys have Individualized Education Plans. I am still trying to wrap my head around it all. I have faith that God trusts that I can handle this. So I turn to my blog to keep track and chronicle our journey. Thankfully my questions have reached others who are able to lend me their wisdom and support! I reach back to what I have always believed about my RSD, to get through anything you need to have a solid foundation of support.
I know my first step is to make sure a great IEP is in place for both children. How do we get there when we have a communication problem with the Child Study Team and teachers? Some of the advice I have been given is to try to keep emotion out of it and to ask pointed questions. If I do not understand then rephrase the question. I am also bringing a family friend to be a second set of ears for me. Also, I am recording the meeting so that I do not need to take notes making it so that I can focus more on my questions and what is being said. I have joined online support groups. Read through the booklets the Child Study Team has given me. I have researched information regarding my boys problems and looked into what accomodations/modifications are proven to be the most helpful. I think I am prepared for the meeting, some extra prayers won't hurt though!
What comes next? Is a great IEP enough? School's cannot diagnose specific learning disabilities but they can help remediate the problem. Do we need to seek a Neurodevelopmental Pediatrician and have them evaluated for a medical diagnoses? Will it make a difference in their education? Should we get Gabe a tutor and Lucas a private Speech Language Pathologist? Do we just sit back wait and see? If someone told me last year that Gabriel had a learning disability I would have laughed in their faces. Then again I didn't know there is a learning disability that has to deal with handwriting. I have always known he had an issue with handwriting. So what if there is something going on that we do not have the information about? Then again what if nothing is really wrong besides his handwriting disorder?
There are no easy answers.
Tuesday, April 30, 2013
Friday, April 26, 2013
Dysgraphia
The National Center for Learning Disabilities has been my favorite resourcesince discovering that Gabriel has a learning disability. http://www.ncld.org/
I had always claimed that Gabriel had "The worlds worst handwriting" that he was meant to be a "doctor based on his handwriting". Leo and I were no strangers to the amount of tears homework brought because we would make Gabe erase and rewrite trying to get him to put more effort in being neat. When Gabriel would complain about his hand hurting or cramping up I just thought he was stalling or trying to get out of his homework. School and Homework are very important in our home.
After Gabriel's evaluations from the school district I reviewed this checklist against a sample of Gabriel's handwriting. It was then I learned that my years of concern about his handwriting were not a silly over reacting notion. I should have pushed harder when I expressed my concerns to his teachers. I was told "He is a boy" "It will come" "Yes he has bad handwriting but I have seen worse." "Do some hand strengthening excersizes." Never once did anyone take my concern seriously and since he was always getting good grades I just assumed he didn't care how his handwriting looked. I should have listened to my gut that there was a problem, because it is a real problem.
What I have learned is that Gabriel fits the profile of Dysgraphia perfectly. Reading about this became an A HA moment. All those years I thought Gabriel was just trying to get out of writing well it turns out that with Dysgraphia the act of writing is physically difficult. Handwriting requires a complex set of motor and information processing skills. It can lead to problems with spelling, poor handwriting, and putting thoughts on paper. This answers so much about Gabriel. He is a great story teller but whenever I ask him to write it down he freezes, he simply cannot think about what to write. People with Dysgraphia struggle to organize letters, numbers and words on a line. Dysgraphia is not only about sloppy handwriting. It is a type of processing disorder. It is based on either or both visual spatial difficulties which is a difficulty in processing what the eye sees or a language processing difficulty which is the difficulty in processing what the ear hears. Dysgraphia is a life long disability but you can teach a child how to over come most of this challenge and give him tools to use to assist him.
Below is the checklist from http://www.ncld.org/types-learning-disabilities/dysgraphia/common-warning-signs-of-dysgraphia-in-children-in-grades-3-8 After the checklist I have included 3 samples of Gabriel's handwriting with comments regarding how to spot the dysgraphia inside of the mess. When you look at these samples please remember that he is in the 4th grade and will turn 10 years old in May.
These are his recent handwriting samples I took a picture of from his LAL tests.
I had always claimed that Gabriel had "The worlds worst handwriting" that he was meant to be a "doctor based on his handwriting". Leo and I were no strangers to the amount of tears homework brought because we would make Gabe erase and rewrite trying to get him to put more effort in being neat. When Gabriel would complain about his hand hurting or cramping up I just thought he was stalling or trying to get out of his homework. School and Homework are very important in our home.
After Gabriel's evaluations from the school district I reviewed this checklist against a sample of Gabriel's handwriting. It was then I learned that my years of concern about his handwriting were not a silly over reacting notion. I should have pushed harder when I expressed my concerns to his teachers. I was told "He is a boy" "It will come" "Yes he has bad handwriting but I have seen worse." "Do some hand strengthening excersizes." Never once did anyone take my concern seriously and since he was always getting good grades I just assumed he didn't care how his handwriting looked. I should have listened to my gut that there was a problem, because it is a real problem.
What I have learned is that Gabriel fits the profile of Dysgraphia perfectly. Reading about this became an A HA moment. All those years I thought Gabriel was just trying to get out of writing well it turns out that with Dysgraphia the act of writing is physically difficult. Handwriting requires a complex set of motor and information processing skills. It can lead to problems with spelling, poor handwriting, and putting thoughts on paper. This answers so much about Gabriel. He is a great story teller but whenever I ask him to write it down he freezes, he simply cannot think about what to write. People with Dysgraphia struggle to organize letters, numbers and words on a line. Dysgraphia is not only about sloppy handwriting. It is a type of processing disorder. It is based on either or both visual spatial difficulties which is a difficulty in processing what the eye sees or a language processing difficulty which is the difficulty in processing what the ear hears. Dysgraphia is a life long disability but you can teach a child how to over come most of this challenge and give him tools to use to assist him.
Below is the checklist from http://www.ncld.org/types-learning-disabilities/dysgraphia/common-warning-signs-of-dysgraphia-in-children-in-grades-3-8 After the checklist I have included 3 samples of Gabriel's handwriting with comments regarding how to spot the dysgraphia inside of the mess. When you look at these samples please remember that he is in the 4th grade and will turn 10 years old in May.
For At Least the Past Six Months, My Child Has Had Trouble:
Writing:
- Gripping a pencil comfortably when writing or drawing.
- Writing neatly, evenly, and legibly.
- Using either printed or cursive (or mixing the two styles).
- Leaving consistent spacing between letters and words.
- Writing on a line or within margins.
- Copying letters and numbers neatly and accurately.
- Spelling even familiar words correctly.
- Being consistent in spelling.
- Writing/printing neatly and without a lot of cross-outs and erasures
- Expressing written ideas in an organized way.
- Preparing outlines and organizing written work.
- Writing without saying the words aloud.
- Thinking of words to write.
- Remembering to use all the words he intends to in his written work.
- Focusing on the meaning of what he writes; (because of the physical demands during writing)
- Maintaining energy and easy posture when writing/drawing.
Math:
- Aligning numbers correctly when doing math problems.
Social-Emotional:
- Being motivated and confident about writing.
- Taking pride in written work.
These are his recent handwriting samples I took a picture of from his LAL tests.
 |
| Notice how on the first line his lower case r is the same size as his capital case I. There is a huge space gap between the words revealed and Koko in the first line. On the second line see how most of the letters drop below the line and the words tend to run together. Notice the size of the period on the third line. On the fifth line see how the period is immediately followed by the beginning of the next sentence. See how on line 5 he is able to spell the word friends correctly but incorrectly on line 7. |
 |
| On the first question notice how he is not making proper use of the space available so he has to squeeze the rest of his sentence underneath the line. On the second question he forgot to use a capital B. Again he is not using the space he is given appropriately and has to squeeze the rest underneath the second line. The last question he begins his sentence at the halfway point on the line. His handwriting already looks painful and unreadable. |
 |
| This was a bonus/extra credit question. I was impressed at how neatly he wrote Even though this is his neat handwriting you can see immediately the first word One, the letter are all the same size. He then adds a huge space before his next word which again is supposed to be a lower case word but takes up the whole space on the line. See how the L in both Long(s) are capitols even though he is not beginning another sentence. You can see how the first two lines he took care to be neat but by the fourth line his writing becomes sloppy and more difficult to read. |
Short Term Memory issues
I keep wanting to write a post about this topic but keep forgetting when I log onto my account! :)
One of the weird and more laughable side effects of life with RSD is the Short Term Memory loss/issues. With all the dark and hideous side effects RSD brings this is the one that can make you laugh. Laughter is the best medicine because it brightens your day and takes some of the depressing weight off your shoulders. Bare in mind though that while the RSDer will often find their bloppers funny we do not like to be laughed at so please laugh with us but never use this side effect to make fun of the RSDer. Before I get into my goof ups I want to take a serious minute to reflect on how this affects my day to day life.
Have you seen that commercial where the woman walks into the room and states that she forgot what she was looking for? She asks the dog if he remembers. She tries walking out of the room and walking back in. Life is sort of like that for me. After I remember what I am looking for then I have to remember where I put it. Leo will tell me to make some phone calls. I will pick up the phone and forget who I had to call or why I had to call them. The worst is regarding daily routines. You know those routines that become such a habit you feel like you could do them in your sleep. Brushing my teeth is a morning routine but there are many days I will forget if I did this so I learned to touch my toothbrush to see if it is wet as a guide to know for certain. I can forget if I ate breakfast and lunch. I can be cleaning the dishes, stop to talk to the kids and forget to go back to the kitchen. The worst is if I forgot that I already took my meds, I have had to teach myself coping skills to protect myself from accidental overdose.
Now that we talked about the serious we can laugh at my most memorable goof ups!
Finding my cell phone. Cannot remember where I last used it or what I was doing when I last had it, I retrace my steps. I give up and go into the kitchen to get a drink. I get a glass out of the cabinet and turn to the fridge...it is sitting there right next to the juice inside the fridge. Don't ask me how!!!
Washing dishes I notice the enchalada pan needs to soak in hot water. I turn the water on and walk out of the room to get some more dishes from the table. I come back and the water is still cold? My first thought, oh no something is wrong with the hot water heater. My next thought, shoot I turned on the cold instead of the hot!
When Gabe was a toddler and I was giving him a bath I would shampoo his hair. As a typical toddler he would groan and then say "Again?" Like a good mom I would tell him "Yes Gabe we should wash your hair every day." And then he would say "But you just did!" I stop and stare at him, "HUH?"
My morning coffee - I walk into the kitchen to make some breakfast and fix a cup of coffee. Lucas or Gabe needs something so I walk away. I start picking up toys or blankets and then I go upstairs to get dressed. As I am getting dressed I slouch and say "I need coffee" and then I look all over the house wondering where I put that cup of coffee. By the time I find it the coffee has gone too cold to drink so I put it in the microwave. While it is reheating I need to get Lucas dressed. I yell at Gabe to get out of the bathroom. I take Lucas in to brush his teeth and I remember I have not eaten breakfast yet. I finish getting the kids ready for school then walk back to the kitchen and start making my own breakfast. As I sit down to eat I reach for my coffee, missing. Sigh. Where did I put that darn cup? I retrace my steps through the house and give up. I fix a fresh cup of coffee. In the afternoon I fix my lunch and place it in the microwave..."HELLO COFFEE!"
One time my best friend was visiting. I walk into the room she is sitting in. I enjoy the comfortable silence. I get a text message from my husband about Whitney Housten passing away. I look up and tell my friend and she looks at me in disbelief. "I just told you that and you ignored me!"
Gabriel loves reminding me of the time I put him in the bathtub with his socks on. That will always remind me of the time when he was 18 months old. We were running late for something and it was winter outside. I had to go out and heat up the car. I come in the house and grab the diaper bag placing it by the front door. I grab Gabe and put his coat on telling him it is cold out. I pick him up and put him on the front porch, reach in to grab the bag and place it next to him. I lock and close the door. When I reach down to pick Gabe up I realize, No Socks or Shoes! I reach for the doornob but it is locked. I pick Gabe up walk to the car, turn it off, then walk back to the house and put on his socks and shoes. I walk back to the door and realize "KEYS!" I grab them quickly from the counter. After getting him situated in his carseat I remember, diaper bag. I put it back in the house so now I have to turn the car off again. By the time we were on the road I remember I had a travel mug of coffee sitting on the kitchen counter. UGH!
I love my DVR. Before I had my DVR I would get bored during commercials and channel hop until my show came back on. Often I would find something else interesting and 10-15minutes later remember "MY SHOW!" Now I can skip commercials and do not forget which show I am watching.
What was I going to say?
Brain games and learning to repeat things many times help me. I have come up with some strategies for situations that I tend to be more forgetful. However forgetful I may be I actually have an excellent long term memory. I don't remember names but I remember events. I remember old conversations and dreams. I might forget what I ate for breakfast but I can remember what I made for dinner last week!
How does memory issues have something to do with pain? One idea is that the physical exhaustion from being in pain makes the brain tired so it has a hard time with simple recall. Another idea is that between nerve medications and pain medications the memory is affected. I believe it is a combination of the two. Imagine being in so much pain that your body is physically exhausted then you add in the nerve medications that can create a calming affect to reduce the overly sensitive nerves and the pain medication that can create a drowsy side affect. I am sure there are other technical terms I could use, but cannot remember at this time.
I like to laugh at my goof ups, they are the lighter side of RSD. Still, I must remind you. There is a difference between laughing WITH someone and laughing AT someone. If I am having a bad day I may be frusterated with my on going battle and less inclinded to laugh at myself so I would become very upset if you decided to laugh at one of my goof ups when I was clearly not in the mood for it.
If we are in the middle of a conversation and I stop talking? It is because I forgot what I was going to say and I am desperately trying to figure it out. If we are talking and a word doesn't come out right? Please don't call attention to this flub. Many of my spelling errors have more to do with my memory not working well than my ability to spell accurately. Please just be patient and understanding so I can feel accepted and able to work through a particular ordeal. Thank you!
One of the weird and more laughable side effects of life with RSD is the Short Term Memory loss/issues. With all the dark and hideous side effects RSD brings this is the one that can make you laugh. Laughter is the best medicine because it brightens your day and takes some of the depressing weight off your shoulders. Bare in mind though that while the RSDer will often find their bloppers funny we do not like to be laughed at so please laugh with us but never use this side effect to make fun of the RSDer. Before I get into my goof ups I want to take a serious minute to reflect on how this affects my day to day life.
Have you seen that commercial where the woman walks into the room and states that she forgot what she was looking for? She asks the dog if he remembers. She tries walking out of the room and walking back in. Life is sort of like that for me. After I remember what I am looking for then I have to remember where I put it. Leo will tell me to make some phone calls. I will pick up the phone and forget who I had to call or why I had to call them. The worst is regarding daily routines. You know those routines that become such a habit you feel like you could do them in your sleep. Brushing my teeth is a morning routine but there are many days I will forget if I did this so I learned to touch my toothbrush to see if it is wet as a guide to know for certain. I can forget if I ate breakfast and lunch. I can be cleaning the dishes, stop to talk to the kids and forget to go back to the kitchen. The worst is if I forgot that I already took my meds, I have had to teach myself coping skills to protect myself from accidental overdose.
Now that we talked about the serious we can laugh at my most memorable goof ups!
Finding my cell phone. Cannot remember where I last used it or what I was doing when I last had it, I retrace my steps. I give up and go into the kitchen to get a drink. I get a glass out of the cabinet and turn to the fridge...it is sitting there right next to the juice inside the fridge. Don't ask me how!!!
Washing dishes I notice the enchalada pan needs to soak in hot water. I turn the water on and walk out of the room to get some more dishes from the table. I come back and the water is still cold? My first thought, oh no something is wrong with the hot water heater. My next thought, shoot I turned on the cold instead of the hot!
When Gabe was a toddler and I was giving him a bath I would shampoo his hair. As a typical toddler he would groan and then say "Again?" Like a good mom I would tell him "Yes Gabe we should wash your hair every day." And then he would say "But you just did!" I stop and stare at him, "HUH?"
My morning coffee - I walk into the kitchen to make some breakfast and fix a cup of coffee. Lucas or Gabe needs something so I walk away. I start picking up toys or blankets and then I go upstairs to get dressed. As I am getting dressed I slouch and say "I need coffee" and then I look all over the house wondering where I put that cup of coffee. By the time I find it the coffee has gone too cold to drink so I put it in the microwave. While it is reheating I need to get Lucas dressed. I yell at Gabe to get out of the bathroom. I take Lucas in to brush his teeth and I remember I have not eaten breakfast yet. I finish getting the kids ready for school then walk back to the kitchen and start making my own breakfast. As I sit down to eat I reach for my coffee, missing. Sigh. Where did I put that darn cup? I retrace my steps through the house and give up. I fix a fresh cup of coffee. In the afternoon I fix my lunch and place it in the microwave..."HELLO COFFEE!"
One time my best friend was visiting. I walk into the room she is sitting in. I enjoy the comfortable silence. I get a text message from my husband about Whitney Housten passing away. I look up and tell my friend and she looks at me in disbelief. "I just told you that and you ignored me!"
Gabriel loves reminding me of the time I put him in the bathtub with his socks on. That will always remind me of the time when he was 18 months old. We were running late for something and it was winter outside. I had to go out and heat up the car. I come in the house and grab the diaper bag placing it by the front door. I grab Gabe and put his coat on telling him it is cold out. I pick him up and put him on the front porch, reach in to grab the bag and place it next to him. I lock and close the door. When I reach down to pick Gabe up I realize, No Socks or Shoes! I reach for the doornob but it is locked. I pick Gabe up walk to the car, turn it off, then walk back to the house and put on his socks and shoes. I walk back to the door and realize "KEYS!" I grab them quickly from the counter. After getting him situated in his carseat I remember, diaper bag. I put it back in the house so now I have to turn the car off again. By the time we were on the road I remember I had a travel mug of coffee sitting on the kitchen counter. UGH!
I love my DVR. Before I had my DVR I would get bored during commercials and channel hop until my show came back on. Often I would find something else interesting and 10-15minutes later remember "MY SHOW!" Now I can skip commercials and do not forget which show I am watching.
What was I going to say?
Brain games and learning to repeat things many times help me. I have come up with some strategies for situations that I tend to be more forgetful. However forgetful I may be I actually have an excellent long term memory. I don't remember names but I remember events. I remember old conversations and dreams. I might forget what I ate for breakfast but I can remember what I made for dinner last week!
How does memory issues have something to do with pain? One idea is that the physical exhaustion from being in pain makes the brain tired so it has a hard time with simple recall. Another idea is that between nerve medications and pain medications the memory is affected. I believe it is a combination of the two. Imagine being in so much pain that your body is physically exhausted then you add in the nerve medications that can create a calming affect to reduce the overly sensitive nerves and the pain medication that can create a drowsy side affect. I am sure there are other technical terms I could use, but cannot remember at this time.
I like to laugh at my goof ups, they are the lighter side of RSD. Still, I must remind you. There is a difference between laughing WITH someone and laughing AT someone. If I am having a bad day I may be frusterated with my on going battle and less inclinded to laugh at myself so I would become very upset if you decided to laugh at one of my goof ups when I was clearly not in the mood for it.
If we are in the middle of a conversation and I stop talking? It is because I forgot what I was going to say and I am desperately trying to figure it out. If we are talking and a word doesn't come out right? Please don't call attention to this flub. Many of my spelling errors have more to do with my memory not working well than my ability to spell accurately. Please just be patient and understanding so I can feel accepted and able to work through a particular ordeal. Thank you!
Thursday, April 25, 2013
Learning Disabilities + Gabriel = Our 4th Grade Journey
This year we began a new unexpected journey with Gabriel. We have been trying to figure this mess out. I have been pretty tight lipped about what has been going on. I do not like to talk about issues until I have a better handle on them. Please understand the reason why we feel very surprised about all of this is that we really didn't see this coming. Gabriel has always been a good student with average grades. My yearly complaint has been about his handwriting but I was always told not to worry about it.
Having your child struggle in school is hard. Being told that the teachers want to have him reviewed by the Child Study Team for attentional issues and learning problems feels like you were sucker punched. You go through a few thoughts. "Yes some homework seems hard but his grades are good enough." "Maybe he is just bored in your class?" "Not my kid!" "You have too high of expectations." Okay you get the point. I fought hard against the idea he had attentional issues because Gabe only presented after my surgery, and I had warned them regarding this behaviour in hopes of getting him help for his emotional needs. I didn't know enough about learning disabilities.
I couldn't argue the fact that for the first time he had a severe grade drop. Last year he received a B in math and now he received an F! Leo and I both understood that a big part of this was due to the fact that I couldn't help him with his homework or studies anymore. I was very upset that no one was taking this under consideration. I was very upset that more than a few times they suggested ADD inattentive disorder. I had hoped that if they had seen him daydreaming the teachers would have talked to him or send him to the guidence office because I did tell them what was going on at home. I am not saying that the teachers were not helping Gabriel but they were not taking into consideration what was happening at home and how it could affect him.
This whole process was frusterating. There was a large disconnect between the teachers and I. This process did bring out the defensive side of me. All of this was happening while I was supposed to be recovering from my second back surgery in 5 months. My emotions were on edge.
As soon as I could spend some serious time on the computer I turned into my obsessive self and began to research ADD and Learning Disabilities. I had heard of Dyslexia (my nephew TJ has recently been diagnosed with this) but I didn't know much about any other LD's.
The first interesting FACT I learned is that ADHD/ADD is not a learning disability but a brain based mental disorder that affects the behaviours of a child. The second fact I learned about it is that it must be present in more than one area of a child's life. Meaning, that having attention issues only at school is not enough to suspect this diagnosis. ADHD/ADD disorders can accompany LD's compounding the problem. ADD inattentive type is defined as an inability to sustain attention. Does fidgeting, daydreaming and clock watching define this disorder? I found a checklist to help me decipher this http://pediatrics.about.com/cs/adhd/l/bl_adhd_quiz.htm . On Gabriel's behalf I can say that he does not have any issue with; sustaining attention during tasks or play activity, listening when spoken to directly, following through with instructions and chores, being distracted by outside stimuli, and he is not forgetful regarding his daily activities. He does obviously have issues with schoolwork and homework. I am not sure how to answer the question regarding organizing tasks or activities, because I do not have a frame of reference for this question. He does fidget with his hands and feet. Gabriel was an early talker and can talk your ear off but he never does this at an inappropriate moment. He does not; leave his seat in class or at other situations where he is supposed to remain seated, run about or climbs inappropriately, have difficulty in playing quietly, he is not an "on the go" or seem to be driven by a "motor" type, he does not blurt out answers to questions, he does not have difficulty waiting his turn, and he does not butt into games or conversations.
Gabriel does not fit the profile of a child with any type of ADHD/ADD. What I have learned is that he needs help with school as it is clear that is where he has problems. Taking this information I then educated myself about Learning Disabilities. This is when I hit the jackpot! Parents please take my advice. Even if you do not know about LD's or ADHD use what the teachers are telling you and combine it with what you know of your child. Go with your gut! If your gut tells you that your child has trouble with something then follow up on it! I had fallen into a rut of being concerned about Gabriel's handwriting but was constantly told not to worry about it.
This is what I have learned about Learning Disabilities:
There are 4 types of LD's. Dyslexia, Dyscalculia, Dysgraphia and Dyspraxia. You can see the pattern here, the Dys of each word is greek for inability. Dyslexia is the inability to process language; reading, writing and spelling. Dyscalculia is the inability to do math facts; computation, remembering math facts, concepts of time and money. Dysgraphia is the inability to perform writen expression; handwriting, spelling and composition. Dyspraxia is not really a LD but can affect a child's learning development. Dyspraxia is the inability to coordinate fine motor skills, coordination and manual dexterity. Executive Function issues are not a LD but can affect children with LD. I quote from http://www.ncld.org/types-learning-disabilities/executive-function-disorders "Many people with LD struggle with executive function, which can make activities like planning, organizing, strategizing, remembering details, and managing time and space difficult. Problems with executive function — a set of mental processes that helps connect past experience with present action — can be seen at any age and often contribute to the challenges individuals with LD face in academic learning."
Then you have a list of what they call co-occuring disorders. Disorders that are not LD's but can mask or accompany your childs LD. ADHD, Autism Spectrum, Visual Processing, Auditory Processing, and Giftedness can all compound and combine with your child with an LD's learning experience.
As you can imagine it is a confusing and frusterating process to figure out. Which one or more or none of these applies to your child? Where do you start and how can you really tell if your child has a LD? As explained to me by the Child Study Team it is a 20 point or more discrepency between his highest acheived score and the lowest score on the educational assessement evaluation. You also need to take into consideration the other evaluations involved in the process. We had Gabriel complete the Educational Assessment, a psychological evaluation, a questionnair that we (his parents) completed and his teachers completed, a social assessment, and based on my concerns we also had an occupational therapist evaluation completed.
Based on the information pulled from the evaluations the Child Study Team has stated that Gabriel does have a Specific Learning Disability. We have developed an IEP (Individual Education Plan) so that we can modify his education to best fit his needs. We are also giving him Occupational Therapy (OT) for his handwriting issues. I have given all the evaluations to our pediatrician for his review. Our pediatrician has told us that Gabriel fails to meet the criteria for ADD but he does have a fine motor handwriting disorder. He also told us that he finds it interesting that the only time Gabriel seemed to have become fidgety or distracted was when a pencil was in his hand.
So what does all of this mean for Gabriel? Where do we go from here? I still have my homework to do to find the best steps to follow for his long term educational needs. That is my next step to figure out.
Having your child struggle in school is hard. Being told that the teachers want to have him reviewed by the Child Study Team for attentional issues and learning problems feels like you were sucker punched. You go through a few thoughts. "Yes some homework seems hard but his grades are good enough." "Maybe he is just bored in your class?" "Not my kid!" "You have too high of expectations." Okay you get the point. I fought hard against the idea he had attentional issues because Gabe only presented after my surgery, and I had warned them regarding this behaviour in hopes of getting him help for his emotional needs. I didn't know enough about learning disabilities.
I couldn't argue the fact that for the first time he had a severe grade drop. Last year he received a B in math and now he received an F! Leo and I both understood that a big part of this was due to the fact that I couldn't help him with his homework or studies anymore. I was very upset that no one was taking this under consideration. I was very upset that more than a few times they suggested ADD inattentive disorder. I had hoped that if they had seen him daydreaming the teachers would have talked to him or send him to the guidence office because I did tell them what was going on at home. I am not saying that the teachers were not helping Gabriel but they were not taking into consideration what was happening at home and how it could affect him.
This whole process was frusterating. There was a large disconnect between the teachers and I. This process did bring out the defensive side of me. All of this was happening while I was supposed to be recovering from my second back surgery in 5 months. My emotions were on edge.
As soon as I could spend some serious time on the computer I turned into my obsessive self and began to research ADD and Learning Disabilities. I had heard of Dyslexia (my nephew TJ has recently been diagnosed with this) but I didn't know much about any other LD's.
The first interesting FACT I learned is that ADHD/ADD is not a learning disability but a brain based mental disorder that affects the behaviours of a child. The second fact I learned about it is that it must be present in more than one area of a child's life. Meaning, that having attention issues only at school is not enough to suspect this diagnosis. ADHD/ADD disorders can accompany LD's compounding the problem. ADD inattentive type is defined as an inability to sustain attention. Does fidgeting, daydreaming and clock watching define this disorder? I found a checklist to help me decipher this http://pediatrics.about.com/cs/adhd/l/bl_adhd_quiz.htm . On Gabriel's behalf I can say that he does not have any issue with; sustaining attention during tasks or play activity, listening when spoken to directly, following through with instructions and chores, being distracted by outside stimuli, and he is not forgetful regarding his daily activities. He does obviously have issues with schoolwork and homework. I am not sure how to answer the question regarding organizing tasks or activities, because I do not have a frame of reference for this question. He does fidget with his hands and feet. Gabriel was an early talker and can talk your ear off but he never does this at an inappropriate moment. He does not; leave his seat in class or at other situations where he is supposed to remain seated, run about or climbs inappropriately, have difficulty in playing quietly, he is not an "on the go" or seem to be driven by a "motor" type, he does not blurt out answers to questions, he does not have difficulty waiting his turn, and he does not butt into games or conversations.
Gabriel does not fit the profile of a child with any type of ADHD/ADD. What I have learned is that he needs help with school as it is clear that is where he has problems. Taking this information I then educated myself about Learning Disabilities. This is when I hit the jackpot! Parents please take my advice. Even if you do not know about LD's or ADHD use what the teachers are telling you and combine it with what you know of your child. Go with your gut! If your gut tells you that your child has trouble with something then follow up on it! I had fallen into a rut of being concerned about Gabriel's handwriting but was constantly told not to worry about it.
This is what I have learned about Learning Disabilities:
There are 4 types of LD's. Dyslexia, Dyscalculia, Dysgraphia and Dyspraxia. You can see the pattern here, the Dys of each word is greek for inability. Dyslexia is the inability to process language; reading, writing and spelling. Dyscalculia is the inability to do math facts; computation, remembering math facts, concepts of time and money. Dysgraphia is the inability to perform writen expression; handwriting, spelling and composition. Dyspraxia is not really a LD but can affect a child's learning development. Dyspraxia is the inability to coordinate fine motor skills, coordination and manual dexterity. Executive Function issues are not a LD but can affect children with LD. I quote from http://www.ncld.org/types-learning-disabilities/executive-function-disorders "Many people with LD struggle with executive function, which can make activities like planning, organizing, strategizing, remembering details, and managing time and space difficult. Problems with executive function — a set of mental processes that helps connect past experience with present action — can be seen at any age and often contribute to the challenges individuals with LD face in academic learning."
Then you have a list of what they call co-occuring disorders. Disorders that are not LD's but can mask or accompany your childs LD. ADHD, Autism Spectrum, Visual Processing, Auditory Processing, and Giftedness can all compound and combine with your child with an LD's learning experience.
As you can imagine it is a confusing and frusterating process to figure out. Which one or more or none of these applies to your child? Where do you start and how can you really tell if your child has a LD? As explained to me by the Child Study Team it is a 20 point or more discrepency between his highest acheived score and the lowest score on the educational assessement evaluation. You also need to take into consideration the other evaluations involved in the process. We had Gabriel complete the Educational Assessment, a psychological evaluation, a questionnair that we (his parents) completed and his teachers completed, a social assessment, and based on my concerns we also had an occupational therapist evaluation completed.
Based on the information pulled from the evaluations the Child Study Team has stated that Gabriel does have a Specific Learning Disability. We have developed an IEP (Individual Education Plan) so that we can modify his education to best fit his needs. We are also giving him Occupational Therapy (OT) for his handwriting issues. I have given all the evaluations to our pediatrician for his review. Our pediatrician has told us that Gabriel fails to meet the criteria for ADD but he does have a fine motor handwriting disorder. He also told us that he finds it interesting that the only time Gabriel seemed to have become fidgety or distracted was when a pencil was in his hand.
So what does all of this mean for Gabriel? Where do we go from here? I still have my homework to do to find the best steps to follow for his long term educational needs. That is my next step to figure out.
Wednesday, April 24, 2013
Flair
Pain is usually a personal experience. Everyone experiences it, describes it, and is affected by it differently. Yet the "McGill Pain Index" is a medical tool that shows how even though the way you experience pain may be different than how someone else experiences pain some disorders have unifying key words to describe the pain. This medical tool helps physican's understand and treat patients accordingly. The McGill Pain Index rates RSD/CRPS/Causalgia the highest level of pain amoung chronic pain disorders and uses the comparsion of common acute medical problems. This is a great medical tool but in the real world it means nothing. Even amoung other RSD'ers the only word that means anything about our joined pain is FLAIR.
I am going to do my best to explain what a Flair is and the effects of it has on RSD'ers. Please bear with me. The best way I can do this is to re-tell the story a recent flair, a sort of walk in my shoes if you will.
April 13th - 14th, I had a busy weekend catching up on chores and playing with the kids. That Monday morning I woke up and had to get the kids ready for school. I was feeling energized which was a good thing considering my to-do list; laundry, coupons, groceries, dishes, cooking, and my regular Mommy duties. After the kids were off to school my first job was to clip coupons and finalize my grocery order, I like to do this from the comfort of the couch. Leo was home with an upper resperatory infection so he was laying down on the other couch watching tv. Okay, in a way we were watching tv together but I really was multi tasking with my coupons and internet grocery order. That's when it happened. The flair. Inside of 60 seconds the cold froze my bones and the deep freeze of the burn felt like my leg was slammed inside of a heavy vault door. I hadn't moved an inch but I could feel the way my foot suddenly swelled and my sandle became tight. The weight and material of my jeans felt like a lead weight of sandpaper. Within 60 seconds I went from feeling carefree to incredible pain. I didn't fall, jam, or bump my leg. A flair doesn't need a reason. This is part of living life with RSD. I have learned to live in anticipation for the flair but I am never fully ready for the impact of it. The impact is the hardest part of a flair in my opinion.
I took a moment to sit and compose myself. No matter how long I live with RSD a flair always brings out the frusteration and sadness with the reality that RSD brings in my life. My SCS was in my purse on the coat rack. I didn't say anything to Leo. I only had to walk one room to get there but the moment I stood up I felt the full impact of the flair. I could not put weight on my leg. Leo looked at me and I think his remark was "Shit, really?" I couldn't walk, couldn't put weight on my leg but I still needed to get to my SCS. Usually I would have asked Leo but he was sick and needed his rest. Sometimes I need to do it myself, keeping a sense of independence. I did what I always do during a bad flair, I dragged my right leg behind me using the strength of my left leg to carry my weight. I didn't allow myself to think about the pain, I needed to stay focused on my goal. My goal was to get to my SCS, turn it on and then I could let emotion roll over me. When I reached the dinning room table I gave myself a moment to hold on, regain my breath. I turned the stimulation and let it flow through me.
The SCS is not a magic pill. Turning it on does not take me from dragging my leg behind me to immediately being able to walk with the full weight placed on my leg. The only immediate result of turning on the stimulation is that a slight edge is taken off of the pain. Patience is needed with expectations of the SCS actually with any type of treatment plan for RSD. I must use the SCS, rest, heat, mild excersizes, and in time the flair will subside.
How did the rest of my week play out? Monday I spent the day on the couch. I made dinner but did not eat, the pain took away my apetite. I went to bed early and Leo took care of the kids. Tuesday after getting the kids ready for school I spent the rest of the day in bed. Leo was still home with his upper respitory infection but took care of the kids when they came home. Wednesday I pushed my limits to do some dishes and put my groceries away. Thursday and Friday I did the bare minimum around the house to help my leg rest. During Wednesday through Friday I would use my cane to help me walk or I would limp from one room to the next. Saturday I began to feel stronger so I cleaned up the kitchen and did some laundry. I rested afterwards and that evening we took the boys for a family movie. I was limping but I was strong enough to not need to use my cane. Sunday my leg was a little stronger. We went to church and then to Leo's parents house. I limped through a little shopping trip and we looked at a house with Lorena (she and her husband are house hunting). The amount of walking took it's toll and soon my limp and leg were worse again. Leo and I both knew I had over done it, walking too much. Each night when I go to bed I hope that in the morning I will be pain free. Each day when I wake up and cannot walk without the SCS being turned on a level of emotional exhaustion hits. It is physically and emotionally exhausting to be in a constant state of pain.
Today, I still have my SCS turned on. I am still limping. In the shower this morning I had to hold my breath and grunt while washing my leg. The sensitivity of RSD makes even the softness fabric of a baby's wash clothe painful. Today is a better pain day than those first few days of the flair. I know that soon this flair will end and I will be able to have some days of being able to catch up around the house. I also know that another flair will come and can come at any given time. That is life with RSD. I am thankful that my SCS can lessen my pain and helps extended the amount of days in between flairs. Life goes on despite being in pain and I have to learn how to go on too. Still, even someone as optimistic as I am will struggle with the isolation of a flair. That is the reason why we need to Advocate for Awareness.
I am going to do my best to explain what a Flair is and the effects of it has on RSD'ers. Please bear with me. The best way I can do this is to re-tell the story a recent flair, a sort of walk in my shoes if you will.
April 13th - 14th, I had a busy weekend catching up on chores and playing with the kids. That Monday morning I woke up and had to get the kids ready for school. I was feeling energized which was a good thing considering my to-do list; laundry, coupons, groceries, dishes, cooking, and my regular Mommy duties. After the kids were off to school my first job was to clip coupons and finalize my grocery order, I like to do this from the comfort of the couch. Leo was home with an upper resperatory infection so he was laying down on the other couch watching tv. Okay, in a way we were watching tv together but I really was multi tasking with my coupons and internet grocery order. That's when it happened. The flair. Inside of 60 seconds the cold froze my bones and the deep freeze of the burn felt like my leg was slammed inside of a heavy vault door. I hadn't moved an inch but I could feel the way my foot suddenly swelled and my sandle became tight. The weight and material of my jeans felt like a lead weight of sandpaper. Within 60 seconds I went from feeling carefree to incredible pain. I didn't fall, jam, or bump my leg. A flair doesn't need a reason. This is part of living life with RSD. I have learned to live in anticipation for the flair but I am never fully ready for the impact of it. The impact is the hardest part of a flair in my opinion.
I took a moment to sit and compose myself. No matter how long I live with RSD a flair always brings out the frusteration and sadness with the reality that RSD brings in my life. My SCS was in my purse on the coat rack. I didn't say anything to Leo. I only had to walk one room to get there but the moment I stood up I felt the full impact of the flair. I could not put weight on my leg. Leo looked at me and I think his remark was "Shit, really?" I couldn't walk, couldn't put weight on my leg but I still needed to get to my SCS. Usually I would have asked Leo but he was sick and needed his rest. Sometimes I need to do it myself, keeping a sense of independence. I did what I always do during a bad flair, I dragged my right leg behind me using the strength of my left leg to carry my weight. I didn't allow myself to think about the pain, I needed to stay focused on my goal. My goal was to get to my SCS, turn it on and then I could let emotion roll over me. When I reached the dinning room table I gave myself a moment to hold on, regain my breath. I turned the stimulation and let it flow through me.
The SCS is not a magic pill. Turning it on does not take me from dragging my leg behind me to immediately being able to walk with the full weight placed on my leg. The only immediate result of turning on the stimulation is that a slight edge is taken off of the pain. Patience is needed with expectations of the SCS actually with any type of treatment plan for RSD. I must use the SCS, rest, heat, mild excersizes, and in time the flair will subside.
How did the rest of my week play out? Monday I spent the day on the couch. I made dinner but did not eat, the pain took away my apetite. I went to bed early and Leo took care of the kids. Tuesday after getting the kids ready for school I spent the rest of the day in bed. Leo was still home with his upper respitory infection but took care of the kids when they came home. Wednesday I pushed my limits to do some dishes and put my groceries away. Thursday and Friday I did the bare minimum around the house to help my leg rest. During Wednesday through Friday I would use my cane to help me walk or I would limp from one room to the next. Saturday I began to feel stronger so I cleaned up the kitchen and did some laundry. I rested afterwards and that evening we took the boys for a family movie. I was limping but I was strong enough to not need to use my cane. Sunday my leg was a little stronger. We went to church and then to Leo's parents house. I limped through a little shopping trip and we looked at a house with Lorena (she and her husband are house hunting). The amount of walking took it's toll and soon my limp and leg were worse again. Leo and I both knew I had over done it, walking too much. Each night when I go to bed I hope that in the morning I will be pain free. Each day when I wake up and cannot walk without the SCS being turned on a level of emotional exhaustion hits. It is physically and emotionally exhausting to be in a constant state of pain.
Today, I still have my SCS turned on. I am still limping. In the shower this morning I had to hold my breath and grunt while washing my leg. The sensitivity of RSD makes even the softness fabric of a baby's wash clothe painful. Today is a better pain day than those first few days of the flair. I know that soon this flair will end and I will be able to have some days of being able to catch up around the house. I also know that another flair will come and can come at any given time. That is life with RSD. I am thankful that my SCS can lessen my pain and helps extended the amount of days in between flairs. Life goes on despite being in pain and I have to learn how to go on too. Still, even someone as optimistic as I am will struggle with the isolation of a flair. That is the reason why we need to Advocate for Awareness.
Monday, April 22, 2013
Why Me?
I often struggle to explain to others the reason I do not have a "Why Me?" attitude about having RSD. Some people believe it is an expected reaction to having something terribly wrong with your health. I know a lot of RSD'ers who do fight with this notion. I once tried explaining that I rely on my faith. I am a Catholic. I trust in God. My attitude towards my disease seems confusing to others. I have the "My cup is half full" positive attitude. Don't get me wrong, there are plenty of days when my optimism is shaky and I do not feel strong. Those days of weakness can sneak up on me. They are usually a result of a long winded flair, my RSD anniversary, or the weeks leading up to surgery. During these times I hold on tightly to my faith. There is one song from my childhood years in my Church choir that help sum up where I get this strong hold of faith from.
I grew up singing this song every Easter, it is a song I knew by heart. My first year with RSD was a very difficult time. I was depressed, overwhelmed with pain, and felt alone. Suddenly this song struck home. I understood it with a more personal experience and hightened emotion. I cried.
Ten Thousand Angels http://www.youtube.com/watch?v=u6O_aajx5cQ
They bound the hands of Jesus in the garden where He prayed;
They led Him thro' the streets in shame.
They spat upon the Savior so pure and free from sin;
They said, "Crucify Him; He's to blame."
He could have called ten thousand angels
To destroy the world and set Him free.
He could have called ten thousand angels,
But He died alone, for you and me.
To the howling mob He yielded; He did not for mercy cry.
The cross of shame He took alone.
And when He cried, "It's finished," He gave Himself to die;
Salvation's wondrous plan was done.
He could have called ten thousand angels
To destroy the world and set Him free.
He could have called ten thousand angels,
But He died alone, for you and me.
This song reminds me about the core of my faith. That God allowed Jesus to bear the cross and to die. God could have saved his Son, he could have called Ten Thousand Angels. Why me? Having faith in God, understanding the message in Easter and in this song I understood. It is not about me. It is about something greater than me or my own human understanding. In life we all have our own cross to bear and if you pay attention you will see that you too have people who will help you carry it, wash your face when you are down trodden, and who will walk beside you to ease the way. Still, it is your cross to bear just as Jesus did with his. God could have saved Jesus just as he could perform a miracle and save us all. This is where I gather my strength and conviction. My faith.
I hope you clicked the You Tube link and listened to the song. It is a real beautiful hymn. You tube has a long list of other variations of the song, they are all good including the Loretta Lynn version if you like classic country music! :)
I grew up singing this song every Easter, it is a song I knew by heart. My first year with RSD was a very difficult time. I was depressed, overwhelmed with pain, and felt alone. Suddenly this song struck home. I understood it with a more personal experience and hightened emotion. I cried.
Ten Thousand Angels http://www.youtube.com/watch?v=u6O_aajx5cQ
They bound the hands of Jesus in the garden where He prayed;
They led Him thro' the streets in shame.
They spat upon the Savior so pure and free from sin;
They said, "Crucify Him; He's to blame."
He could have called ten thousand angels
To destroy the world and set Him free.
He could have called ten thousand angels,
But He died alone, for you and me.
To the howling mob He yielded; He did not for mercy cry.
The cross of shame He took alone.
And when He cried, "It's finished," He gave Himself to die;
Salvation's wondrous plan was done.
He could have called ten thousand angels
To destroy the world and set Him free.
He could have called ten thousand angels,
But He died alone, for you and me.
This song reminds me about the core of my faith. That God allowed Jesus to bear the cross and to die. God could have saved his Son, he could have called Ten Thousand Angels. Why me? Having faith in God, understanding the message in Easter and in this song I understood. It is not about me. It is about something greater than me or my own human understanding. In life we all have our own cross to bear and if you pay attention you will see that you too have people who will help you carry it, wash your face when you are down trodden, and who will walk beside you to ease the way. Still, it is your cross to bear just as Jesus did with his. God could have saved Jesus just as he could perform a miracle and save us all. This is where I gather my strength and conviction. My faith.
I hope you clicked the You Tube link and listened to the song. It is a real beautiful hymn. You tube has a long list of other variations of the song, they are all good including the Loretta Lynn version if you like classic country music! :)
Saturday, April 13, 2013
Obsessive
For those that are really close to me they know that I have an Obsessive Nature. I am not a particularly clean person but when I do clean I like it to be done a certain way. I am not a particularly organized person but I like my drinking glasses and plates and utensils put away in a certan way. If these things are not done in the certain way I like them to be done then I tend to freak out (a little bit). While I like certain things to be done in certain ways I will openly admit that, hands down I am very Obsessive about my boys.
Let's be honest. I know I am a Super Mommy. I placed the standard high for myself and work hard to live up to it. My boys deserve the best I have to offer. It is not easy and there are many days I fall far below my own standards yet each day I wake I promise to work hard.
There is a little bit of pyschology behind my high standards. I remember back when I was 20 years old, barely surviving the RSD, and my mother sat me down for a serious conversation. If I should wish it they would convert the back room into a bedroom for me so I wouldn't have to walk up the two flights of stairs to my attic bedroom. Also, if the time ever came when my RSD spread and I would need a wheel chair they would swap out the stairs at the back door for a ramp. My friends were in college and or working. They had little romances. They were young adults deciding what they wanted to do for the rest of their lives. I was a young adult preparing for the possibility of always living with my parents and the future need of a wheelchair accessable life.
Obviously my life changed and neither of those options came to reality. I had my SCS put in and soon I was walking without crutches, working, dancing and living. When I met Leo we fell in love quickly. We both desperately wanted to make our own family. We made our own rules despite what others thought. Deciding to start a family while living with RSD and knowing what could be took a moment of hesitation. However I had learned that you need to live life to it's fullest while you have the chance. I loved Leo and I wanted a family with him. I hid from him the dangers and what if's. At that time no one could say what RSD or a SCS could do during pregnancy or if either could hurt the baby. I took the risk.
I took the risk and wanted a child. With the risk I made a promise that I would give my child everything I possibly could. My RSD would never stand in the way of me being the Mom he deserved. I promised my child would know love and that I would always be strong for him. That is a big promise when you live with the most severe form of chronic pain. It is a heavy weighted promise but in the action of doing right by my promise I am fullfilled in knowing that he is receiving the best of me.
So, I am obsessive about my boys. Now that they both have IEP's I have more than the normal to obsess about. Making sure they are well rounded, well adjusted, and well taken care of every minutes of every day. They didn't choose to be born to a mother with a health disorder but I did choose to have them knowing that I have a severe chronic pain that does affect every aspect of my life. I am not interested in the pursuet of the famed "Me" time most mothers do so as not to loose themselves while raising their families. I am not interested in partying or nights out for drinks. Nothing wrong with those Mommies who feel the need to let it all loose either. I enjoy being defined as a Gabriel's and Lucas' Mommy! In my opinion there is nothing better than putting in a family movie on a Friday night with a bowl of popcorn for us all to share. The only exception to the family movie night is when I get to go on a hot date night with Leo. That is how I let loose! For me this is everything I ever wanted and for a while thought I could not have.
Leo might wish that I would obsess more on keeping a clean and tidy house. As much as it may frusterate him he is proud of the type of Mom I am. As Leo is found of saying "You are a Mommy with a capital M." Don't let my obsession offend you and the way you do things. Not everyone has had an early life alternating experience that defines them.
One small warning though. Remember, my children are my obsession. So if you do something against them, or hurt them, then you will face my wrath. I know my children better than anything else in this world. I stand up for them and advocate for them. I have their best interests at heart. Treat them well and everything will be fine.
Let's be honest. I know I am a Super Mommy. I placed the standard high for myself and work hard to live up to it. My boys deserve the best I have to offer. It is not easy and there are many days I fall far below my own standards yet each day I wake I promise to work hard.
There is a little bit of pyschology behind my high standards. I remember back when I was 20 years old, barely surviving the RSD, and my mother sat me down for a serious conversation. If I should wish it they would convert the back room into a bedroom for me so I wouldn't have to walk up the two flights of stairs to my attic bedroom. Also, if the time ever came when my RSD spread and I would need a wheel chair they would swap out the stairs at the back door for a ramp. My friends were in college and or working. They had little romances. They were young adults deciding what they wanted to do for the rest of their lives. I was a young adult preparing for the possibility of always living with my parents and the future need of a wheelchair accessable life.
Obviously my life changed and neither of those options came to reality. I had my SCS put in and soon I was walking without crutches, working, dancing and living. When I met Leo we fell in love quickly. We both desperately wanted to make our own family. We made our own rules despite what others thought. Deciding to start a family while living with RSD and knowing what could be took a moment of hesitation. However I had learned that you need to live life to it's fullest while you have the chance. I loved Leo and I wanted a family with him. I hid from him the dangers and what if's. At that time no one could say what RSD or a SCS could do during pregnancy or if either could hurt the baby. I took the risk.
I took the risk and wanted a child. With the risk I made a promise that I would give my child everything I possibly could. My RSD would never stand in the way of me being the Mom he deserved. I promised my child would know love and that I would always be strong for him. That is a big promise when you live with the most severe form of chronic pain. It is a heavy weighted promise but in the action of doing right by my promise I am fullfilled in knowing that he is receiving the best of me.
So, I am obsessive about my boys. Now that they both have IEP's I have more than the normal to obsess about. Making sure they are well rounded, well adjusted, and well taken care of every minutes of every day. They didn't choose to be born to a mother with a health disorder but I did choose to have them knowing that I have a severe chronic pain that does affect every aspect of my life. I am not interested in the pursuet of the famed "Me" time most mothers do so as not to loose themselves while raising their families. I am not interested in partying or nights out for drinks. Nothing wrong with those Mommies who feel the need to let it all loose either. I enjoy being defined as a Gabriel's and Lucas' Mommy! In my opinion there is nothing better than putting in a family movie on a Friday night with a bowl of popcorn for us all to share. The only exception to the family movie night is when I get to go on a hot date night with Leo. That is how I let loose! For me this is everything I ever wanted and for a while thought I could not have.
Leo might wish that I would obsess more on keeping a clean and tidy house. As much as it may frusterate him he is proud of the type of Mom I am. As Leo is found of saying "You are a Mommy with a capital M." Don't let my obsession offend you and the way you do things. Not everyone has had an early life alternating experience that defines them.
One small warning though. Remember, my children are my obsession. So if you do something against them, or hurt them, then you will face my wrath. I know my children better than anything else in this world. I stand up for them and advocate for them. I have their best interests at heart. Treat them well and everything will be fine.
Wednesday, April 10, 2013
Chatting with Lucas
It is always fun to sit down with a small child and chat with them. You get to hear their perspective of the world around them. I have always found these chats to be entertaining. Like the conviction some kids can have over their favorite tv show being the best thing in this world. Or how upsetting it was to them that they didn't get a turn with a toy at recess. A childs life can seem very dramatic to them while it is very entertaining to us grown ups.
Now that Lucas has some language I try to engage him in these conversations. I am not going to sugar coat it, it can be tough but when it works I come away with a cheerishable moment. I am always grateful for the skills the EI therapists gave me in communicating with Lucas. Decoding language, signs, gestures and simply repeating what he said until I can figure it out. Of course there are times when even I, his Mommy, do not understand him after all he does have a speech disorder! Still, talking to Lucas is fun!
This morning we were ready for school early. Lucas and I decided to spend this extra time outside and enjoy the morning air. We have to be outside waiting for the bus anyway. As I sat next to him I had this idea. "Do you want me to record you talking like we did last night for Gabriel?" He said No. I asked again, in fewer words and decided to go for it anyway.
You have to turn the volume up to hear everything he says because at times he will whisper his words. You will see that I don't always have his attention and I have to be quick on my feet because he tends to run. You will hear how I have to decode and repeat his words, how at times I struggle to understand him.
I hope you will understand that while I work with him we do it with a smile! We have fun together! Lucas is an amazing child and he works so hard with his words. This video is a sample of how I work with him. We play and laugh and have a great time while focusing on what he says.
Here is the YouTube link. It is listed as "unlisted" meaning you can not search for it and can only access it by using this link. You do not need a youtube account to view the video. Please ignore the video quality, I am using my phone and need to be able to run (as you will see!)
http://youtu.be/uLwcweTZvWE
Now that Lucas has some language I try to engage him in these conversations. I am not going to sugar coat it, it can be tough but when it works I come away with a cheerishable moment. I am always grateful for the skills the EI therapists gave me in communicating with Lucas. Decoding language, signs, gestures and simply repeating what he said until I can figure it out. Of course there are times when even I, his Mommy, do not understand him after all he does have a speech disorder! Still, talking to Lucas is fun!
This morning we were ready for school early. Lucas and I decided to spend this extra time outside and enjoy the morning air. We have to be outside waiting for the bus anyway. As I sat next to him I had this idea. "Do you want me to record you talking like we did last night for Gabriel?" He said No. I asked again, in fewer words and decided to go for it anyway.
You have to turn the volume up to hear everything he says because at times he will whisper his words. You will see that I don't always have his attention and I have to be quick on my feet because he tends to run. You will hear how I have to decode and repeat his words, how at times I struggle to understand him.
I hope you will understand that while I work with him we do it with a smile! We have fun together! Lucas is an amazing child and he works so hard with his words. This video is a sample of how I work with him. We play and laugh and have a great time while focusing on what he says.
Here is the YouTube link. It is listed as "unlisted" meaning you can not search for it and can only access it by using this link. You do not need a youtube account to view the video. Please ignore the video quality, I am using my phone and need to be able to run (as you will see!)
http://youtu.be/uLwcweTZvWE
Tuesday, April 9, 2013
Prepare for Awareness Day!
MAY 14 2013 Will be the first National Apraxia Awareness Day. It is also Leo's birthday. Of course on that day I will have a dedicated post about Apraxia. My facebook page will be loaded with Awareness information and hopefully I will get all 197 facebook friends to join the event! (Some already have joined!) The event is not something you actually attend. To be a part of the Awareness day you just need to show your support. How can you show your support without attending an actual event? Talk to someone you know who has a child with Apraxia or has it themselves. You can make your status say "I love someone with Childhood Apraxia of Speech". You can read and learn more about Childhood Apraxia of Speech. If your child has Apraxia (fully diagnosed or a working diagnosis) you can use this day to reach out to those in your family or community who may not know about Apraxia.
I saw this logo made for the Awareness day. It made me think about my parenting techniques being so different for Gabriel and Lucas, because of how Apraxia affects our day to day life. Toddler temper tantrums are usually a result of the child having emotions or wants that they are not able to express. A seasoned parent knows that you first need the child to calm down and then get them to relate their issue. With Gabe I used to tell him "Use your words." I still say this to Lucas but it is more complicated. Most of the time Lucas doesn't have the words to use. Or he will try to use his words and I won't be able to understand him because he is missing sounds or using mostly vowels. We do use some sign language to help us when we get stuck, we currently have about 25 signs Lucas can use. Gestures and situations clues help in decoding what Lucas is saying or wants. As frusterating as it can be to be the parent trying to understand your child's wants and needs it is more frusterating to be that child who cannot make their wants/needs understood.
The Ramirez Family has always been a vocal family. We tend to talk loud and over each other. For Lucas we have learned to dial it down and slow down. Mostly we have learned to actively listen so we don't miss out on what Lucas is trying to say. Every now and then he has moments where his speech does come out so clear. Leo and I try not to cry with pride during those moments. We are currently in a phase where Lucas tries to say everything Gabriel says. Lucas will get the tone and pitch, the rythm of what is being said. To us this is beautiful and fun. Of course if we didn't hear Gabriel talking we would not have a clue as to what Lucas said. This phase of Lucas being a copycat is an important milestone. It is a victory and one Leo and I are getting a huge kick out of. Gabriel loves it, he understands that his brother is giving him some Hero Worship.
Lucas doesn't have the ability to use his words. Lucky for him his Mommy is talented with using her words. Lucas and I have an agreement. We will work together for him to learn to speak as a team. I will help him as much as I possibly can and I will advocate for him. I will advocate to make sure he gets everything he needs, every chance that is available to him, and I will keep advocating till he can fully speak for himself in a way that everyone can understand him. Will you join me?
I saw this logo made for the Awareness day. It made me think about my parenting techniques being so different for Gabriel and Lucas, because of how Apraxia affects our day to day life. Toddler temper tantrums are usually a result of the child having emotions or wants that they are not able to express. A seasoned parent knows that you first need the child to calm down and then get them to relate their issue. With Gabe I used to tell him "Use your words." I still say this to Lucas but it is more complicated. Most of the time Lucas doesn't have the words to use. Or he will try to use his words and I won't be able to understand him because he is missing sounds or using mostly vowels. We do use some sign language to help us when we get stuck, we currently have about 25 signs Lucas can use. Gestures and situations clues help in decoding what Lucas is saying or wants. As frusterating as it can be to be the parent trying to understand your child's wants and needs it is more frusterating to be that child who cannot make their wants/needs understood.
Lucas doesn't have the ability to use his words. Lucky for him his Mommy is talented with using her words. Lucas and I have an agreement. We will work together for him to learn to speak as a team. I will help him as much as I possibly can and I will advocate for him. I will advocate to make sure he gets everything he needs, every chance that is available to him, and I will keep advocating till he can fully speak for himself in a way that everyone can understand him. Will you join me?
Monday, April 8, 2013
A beautiful day!
Goodbye cold and grey weather. Hello Spring and sunshine! I love this time of year. It is not a secret that the cold Winter months increase my pain levels. In New Jersey it can feel like Winter nearly half of the year. Still, as hard as those months are it is always a beautiful blessing to have that first day of wonderful sunshine and warmth.
Thanks to my SCS I am not always in high levels of pain. I am able to enjoy today's wonderful weather. I have the window's in the house open, plans to cook the pork chops on the grill, and I feel great today! Yes I am still medicated and I have to be consciencely aware of not pushing myself too far.
Warm weather and plenty of sunshine means destination The Park! I made the obvious choice of taking Lucas to the park after school today. Watching him run around and play. I used this as an opportunity to work on his speech while in an active mode. He did great on single words but the word combinations were difficult to produce while running, swinging or sliding. If I was able to stop him, get him to make eye contact and slowly repeat after me we had slightly more success in his word reproduction. Keeping the play time as his priority I enjoyed listening to his spontanious word attempts. There were other kids at the playground and a few who were the same age, one little girl was only 3 days older than Lucas. I worked on his social speech too. It was adorable when another little boy came up to me and told me his name was Lucas too. I tried to get Lucas to say "Hi Lucas. My name is Lucas too." Of course it didn't come out that way but I am proud at his attempts. Even though his speech is still so far behind Lucas was not shy, in fact he was very outgoing and engaging. Some of the kids did give him a few weird looks when he tried talking to them but I was always right there and would translate so Lucas wouldn't be frusterated at not being understood. I get it, kids are kids and when someone is a little different they don't know how to act. I cannot do much about how other kids interact with Lucas but I can give him the best most supportive environment possible. Today was a great day at the park. Lucas did some great talking. That is what I will take with me.
I feel good today. Yes I am still medicated but I felt energized and my leg felt fine. I seized the opportunity and I had a great day. Life with RSD is not just about the trials and tribulations. When you become committed to the fight and not just the survival you will learn how to make the most of your life. The old cliche "Make Lemonaid from Lemons" you just need to find the right balance of sugar to make the lemon's tasty. For me my sweet balance came when I found Leo and we started our family.
Sunday, April 7, 2013
Gabriel and School
Gabriel is the kid who has to work for his grades. I am the Mom who sits next to him at the homework table to give him the extra help he needs at home. We are a team but as I always tell him "The grade you get on your test is yours alone. I can help you study but it is up to you to know the information and pass that test!" I began using this statement when he was in first grade and received a 100% on a spelling test. He tried saying that it was because of me that he received a 100 and even though that praise felt awesome I needed him to know that I did not take the test for him, he did that all on his own. Many times over the years we have struggled with him not wanting to study "Mommy's way" so I would let him go and study his own way. When he brought home less than stellar grades he would shamefully hang his head and promise not to fight with me about studying anymore.
Gabriel was a good student who struggled with anything that involved handwriting. Well, all of school and homework involves handwriting. As a joke we have often said "Gabe has the world's worst handwriting. That's why he should be a doctor when he grows up." When he was in pre-school I began worrying about his handwritting. He was four years old so when teachers gave me that sweet, "It will come, don't worry" explanation I tried to let it go. In Kindergarten and in First Grade he still had the world's worst handwritting. In Kindergarten it was not a big concern because everything else was on target so I was told to do hand strengthening excersizes. In First Grade it was slightly more concerning however I was told that "Some kids have trouble with handwriting." I noticed the patter, I was worried but teachers weren't. In fact I was told that instead of focusing on improving his handwriting I needed to make sure that he was learning the material. As long as a teacher could decipher it, no worries. At home Leo and I are firm believers that sloppy handwriting showed that he didn't care about his work. I remember the amount of tears first grade homework gave because of how much handwriting was involved. Often times he would cry and fight against doing the work for 30 minutes or more. The homework wasn't difficult for him, writing was. However because he fought against doing his homework he also had trouble keeping up with the class in certain areas.
Gabriel's various teachers have broached concerns about reading and math skills. I always shake my head because they only see one side of him at school. I have tried explaining to them what he is capable of at home. Similiar to how he is able to receive a 100% in spelling if he follows my study methods. Gabriel is a very outgoing boy however he is afraid to ask for help or to raise his hand when he doesn't understand something. He began reading when he was four years old however at school he is afraid to read aloud because he is afraid that if he mispronounces a word he will be laughed at. At home he is comfortable and knows that I am there to help him succeed. He knows I will not tease him for mispronouncing a word or not knowing what 8x4 is automatically. I have learned to trust my "Mommy Gut" but I also have Gabriel's report cards to back up what I know. He is an average student. Last year on the NJ ASK he was rated as a standard score, he is exactly average with the rest of kids his age in NJ.
This past year has been hard on the whole family. I was the one who had to have two surgeries and deal with the pain. I was the one who had to be on bed rest to ensure the stability of my SCS. I believe this has had the largest affect on Gabriel. He is a 9 year old boy who relied on his Mommy's help with homework. Leo worked hard to keep a semblence of our routine. Still, it wasn't the same. We knew we were asking a lot of Gabriel to be mature enough to handle his homework on his own while coping with the emotional affects of watching Mommy be in pain, not able to get out of bed. Fact: Third grade he received a B in Math for the third marking period. My surgery was at the end of April, the beginning of the fourth marking period. His fourth marking period math grade dropped to a C. At the time Leo and I both felt slightly guilty that Gabriel had to experience this grade drop, both of us understood it was a result from having to deal with my surgery. It was only a small grade drop. By then we knew my SCS surgery was not a success and I would need another revision, we were prepared for a more extensive recovery period to help guarentee a positive outcome.
The beginning of this school year I wrote to Gabriel's new teachers about my health and upcoming surgery. I asked if they would keep an eye on him elaborating he may begin to daydream to cope with his emotions. Then on open house night I personally talked to his teacher for a few minutes about my concerns for Gabriel. She promised she would keep an eye on him and said that so far he seems okay; no daydreaming or fidgeting in his chair. On the day of my surgery I wrote a handwritten note to his teachers to make them aware that it was surgery day and if they could please send him to the guidance office, just to make sure that he was okay.
About a month or so later Leo received a phone call. In lieu of parent teacher conferences they would like him to come in to talk about the problems they are seeing in class and with his grades. Gabriel was failing math! I was not able to attend that meeting. Leo felt slightly bombarded with a sudden concern of Gabriel having ADD based on his daydreaming/inattentiveness and his fidgeting in class along with his poor grades. Teacher meetings have always been my thing, we would go together but I was the one who did the talking while Leo was my second set of ears. For Leo's first solo meeting to be this in depth was extraordinary. I think he handled it wonderfully when he ended the meeting with "I would bet that Gabriel's grades will dramatically improve when his Mom is able to start doing homework with him again."
When Leo came home and filled me in on the meeting I became irrate! I told the teachers what was going on and that Gabriel would need more help. I asked them to keep an eye on him. Besides the day of my surgery they have never sent him to guidance or talked to him about why he was so distracted in class. You can bet that I forced myself to attend the next meeting. In the next meeting we talked about evaluating Gabriel. Thanks to my conversations with Lucas' SLP I also knew to request firmly for an Occupational Therapists evaluation about my long standing concern with Gabe's handwriting. I did state my concerns that they were not seeing Gabriel under the best of conditions. No one would want to be judged on their work performace when they were dealing with a sick parent, and that is what we are doing to a child. My concerns about this year being a result of how Gabriel is coping with my disease was dismissed multiple times but I stayed firm and finally they said "This is one surgery you had. It is not a life time condition." Now I had my opening. "Actually this was my 6th surgery since Gabriel was born." Everyone at the table froze and then someone asked "What is it that you have exactly?" This was when I explained that I was diagnosed at 17 years old and how I will always have RSD but I need my SCS to manage my pain. I explained how RSD is considered the most severe form of chronic pain.
Then I stated that I had informed his teachers about my health before my surgery and that I requested they keep an eye on him for this particular behaviours. I know my son better than anyone and I know how he copes. I tried to keep everything mild and I agreed that we needed to evaluate him. I especially didn't want to keep repeating myself each year.
At home we slowly saw Gabriel returning to his normal self. Getting back into the proper homework routine was tough because we also had to juggle in Lucas' needs. I wish I had something positive to say about his teachers. They did not see the positive turn around in Gabe.
I do not have the results of the evaluations in front of me, they are with our pediatrician for his own professional opinion. I can sum it up for you though. Math, low average. Reading average. Oral language skills high average. Gabriel's IQ shows as average. His psychological evaluations were in the average ranges (certain area's he is high and others he is low). The OT evaluation I firmly requested shows that his handwriting is below average. In NJ they do not need to give you a specific learning disability for your child to receive services. The learning disability is established by a 20 point or higher discrepency between two scores. Gabriel's oral abilities being in the high average range and his Math being in the low average range provide this 20 point discrepency. This means he qualifies for special education services. He does not need to be in a special education classroom. Through his IEP we are able to make some modifications to help him in the classroom.
Again I wish I had something positive to say about his teachers. I do have the pleasure of having something positive to say about the school principal. He has stepped in to help moderate and finalize Gabriel's IEP. I may not have an appology from the teachers for over looking Gabriel's emotional need but I received a heartfelt appology from the principal. He also gave us a sincer appology for the continued oversight regarding Gabriel's handwriting issues. He stated "I personally am sorry because he has been a student in my school for a year and half. While at first the teachers could have been right the fact that you continued to see problems means it should have been addressed earlier." He is also going to talk to the teachers about some of my concerns regardin communication. He has asked if we would try The Homework Club again for Gabriel. We had tried it the first few months of the school year but Gabriel would not ask for help so the time spent there was more like a babysitting service. He stated that he wished he knew this about Gabriel. He has a child with a learning disability so he knows first hand how they do not like to ask for help because 'they feel like' everyone else knows the answer and that makes them look stupid. His plan is that he will talk to the teacher who does the homework club, he will tell her what the concerns are and then he will introduce her to Gabriel. I think this will be great! As I told Gabriel he needs to be able to ask a teacher questions the same way he does with me. Then the principal explained to Gabriel "Sometimes one teacher might be able to explain it to you in a way that makes sense!" We are all in agreement that Gabriel needs to give this a try.
Back in January when Leo and I began to see the improvement in Gabe's grades we praised him for the improvements. Gabriel shrugged his shoulders and as he was walking out of the room he said "I don't have to worry about Mommy anymore." Leo and I knew this was the cause but hearing Gabriel say it for himself was heartwrenching. 9 year olds should be having fun being a kid but Gabriel's normal is about having to deal with a higher level of maturity in life. As I get stronger he gets better. As I get better he gets stronger.
In summary: I feel like we will finally be getting Gabriel all the help he needs with the understanding that if he is a little more daydreamy it may be because Mommy is not doing too well at home so he is coping the best way possible. The principal is taking this concern seriously and plans to talk to the guidance office about possibly seeing Gabe once a month or so to touch base and see how things are going. I can now rest with the reassurance that someone is looking out for my child's best intrests. His teachers only get him 9 months out of a year, but the principal will be a steady source! I am not optimistic that this years teachers will have a turn around but I am optimistic that we will have teachers next year who will be more interested in the exact needs of Gabe. It is a good thing that I have had to be my own advocate, it has given me the experiance I need to know how to advocate for both of my children.
I am just sorry I did not trust my gut back when Gabriel was in First and Second grade that there was an actual problem with his handwriting. I had heard about dyslexia for reading but I had never heard that there was a learning disability for handwriting called Dysgraphia! Imagine my surprise when I logged onto a site called National Center for Learning Disabilities and after reading about disorders that do not describe my son I was astounded when I read about Dysgraphia and it felt like someone explained Gabriel's issues without knowing him!
http://www.ncld.org/
Saturday, April 6, 2013
Gabriel's Belt Test
Last night was a sentimental night for me. As I stood in the small and very crowded waiting area of Gabriel's Martial Arts studio I watched him test for his orange belt in Taekwondo. Last year he began Taekwondo lessons as his birthday present. Leo and I agreed that it would help Gabriel stay distracted while I was recovering from my SCS surgery. Gabriel was excited because finally he found a sport that was the perfect fit for him. Most parents get their children involved in Martial Arts to help them learn discipline or self defense. We wanted Gabriel to learn self confidence.
When we learned that the surgery last April was not a success and that I would need to have another revision done I forced myself to attend one of Gabriel's classes last summer. I remember how excited and nervous he was because as he said "I want to impress Mommy." I was impressed! Seeing him at such a young age finding out now what he is meant to do in his life was awe inspiring and remarkable. Some people struggle as adults to find what they are meant to do. Gabriel at age 9 had found his niche in the world. That is why it was very hard for me to learn that I would have to miss his first belt test in October.
As a mother who prides herself in being involved with every part of her childs life it hurt that I couldn't be there for his big day. Gabriel had been struggling with my health and as a child he hoped that I could force myself to be able to make it to his first belt test even though he understood why I wasn't able to make it. Leo and I riled our troops. If I couldn't be there to cheer him on then we would get as many family members as possible! I also asked Leo to video tape parts of the test and take pictures, sending them to me immediately so I could feel like a part of the excitement. I promised Gabriel that I would be sitting at the dinning room table when he came home with the computer ready for me to watch the video. We put as big of a positive spin on it as we could including a pizza party at home afterwards. I planted a huge smile on my face before he left and gave him the biggest hug and kiss for luck. After he walked out the door I allowed myself to cry. I leaned on my support group (RSD United) and distracted myself from what I was missing out on.
Watching Gabriel test for his orange belt last night I remembered what it was like 6 months ago. For me it feels like a lifetime ago. I was slightly frusterated though because Lucas was being a double handful, he didn't want to stay in that cramped space or watch his brother and the other children testing. I was afraid I would miss seeing Gabriel, which I did miss the part with his punches and kicks but I was able to see everything else. The big moment for Gabriel was the sparring portion of the test. He struggles with being aggressive but he was able to get some good kicks in while blocking almost all of his opponents kicks. We didn't have the large crowd to cheer Gabe but my Dad was able to be there and that meant the world to Gabriel. I will always remember the way he looked back, made eye contact with me just to make sure that I was watching. Pride is not a strong enough word for how I felt last night when he received his Orange Belt. Gabriel and I have talked about how he could push and become great at Tae Kwon Do. We have a goal that when he turns 12 he might be able to attend the National Martial Arts camp to show how serious he is about Tae Kwon Do.
I know I am a Super Mom but Gabriel is a Super Kid. This past year has been hard on him. Imagine how hard it is for us as adults to see our parents become frail and ill. Then imagine what those emotions would be like inside of a 9 year old. Leo and I do our best to keep an open door policy where Gabe can come to us about anything. We also talk to him openly and as I like to say "I will be as honest as is age appropriate." Still, he is a child and watching his mother be in pain and that she could not do anything for herself was a hard hit. To watch it happen twice in the same year really took it's toll on him. This past year has been hard on the whole family. I think it was the hardest on Gabriel. Now that I am back on my feet, back to my own Normal, my focus is back on him. It isn't enough to give your child a stable home, food and clothes. Hugs, kisses and unconditional love are a standard. Children need more. They need unconditional support, guidence, but mostly to know that they are put first. Children need to know they are important. These are the standards I set for myself. These standards are not what makes me a Super Mom. I am a Super Mom because I fight to give my children these standards while I am in pain or struggling to get through the day. Gabriel is a Super Kid because of how well he does cope with how my health affects him. Struggling doesn't make him less it makes him more.
Before the test began last night Master Jason asked the children "Who is nervous?" Gabriel was honest and raised his hand and two other children raised their hands. His instructor was slightly shocked when he saw Gabe's hand in the air but said "It is good to be nervous. It means you want it!" Smart man! I am going to use his words as a reminder to Gabe every time he feels nervous and doubts himself.
When we learned that the surgery last April was not a success and that I would need to have another revision done I forced myself to attend one of Gabriel's classes last summer. I remember how excited and nervous he was because as he said "I want to impress Mommy." I was impressed! Seeing him at such a young age finding out now what he is meant to do in his life was awe inspiring and remarkable. Some people struggle as adults to find what they are meant to do. Gabriel at age 9 had found his niche in the world. That is why it was very hard for me to learn that I would have to miss his first belt test in October.
As a mother who prides herself in being involved with every part of her childs life it hurt that I couldn't be there for his big day. Gabriel had been struggling with my health and as a child he hoped that I could force myself to be able to make it to his first belt test even though he understood why I wasn't able to make it. Leo and I riled our troops. If I couldn't be there to cheer him on then we would get as many family members as possible! I also asked Leo to video tape parts of the test and take pictures, sending them to me immediately so I could feel like a part of the excitement. I promised Gabriel that I would be sitting at the dinning room table when he came home with the computer ready for me to watch the video. We put as big of a positive spin on it as we could including a pizza party at home afterwards. I planted a huge smile on my face before he left and gave him the biggest hug and kiss for luck. After he walked out the door I allowed myself to cry. I leaned on my support group (RSD United) and distracted myself from what I was missing out on.
Watching Gabriel test for his orange belt last night I remembered what it was like 6 months ago. For me it feels like a lifetime ago. I was slightly frusterated though because Lucas was being a double handful, he didn't want to stay in that cramped space or watch his brother and the other children testing. I was afraid I would miss seeing Gabriel, which I did miss the part with his punches and kicks but I was able to see everything else. The big moment for Gabriel was the sparring portion of the test. He struggles with being aggressive but he was able to get some good kicks in while blocking almost all of his opponents kicks. We didn't have the large crowd to cheer Gabe but my Dad was able to be there and that meant the world to Gabriel. I will always remember the way he looked back, made eye contact with me just to make sure that I was watching. Pride is not a strong enough word for how I felt last night when he received his Orange Belt. Gabriel and I have talked about how he could push and become great at Tae Kwon Do. We have a goal that when he turns 12 he might be able to attend the National Martial Arts camp to show how serious he is about Tae Kwon Do.
I know I am a Super Mom but Gabriel is a Super Kid. This past year has been hard on him. Imagine how hard it is for us as adults to see our parents become frail and ill. Then imagine what those emotions would be like inside of a 9 year old. Leo and I do our best to keep an open door policy where Gabe can come to us about anything. We also talk to him openly and as I like to say "I will be as honest as is age appropriate." Still, he is a child and watching his mother be in pain and that she could not do anything for herself was a hard hit. To watch it happen twice in the same year really took it's toll on him. This past year has been hard on the whole family. I think it was the hardest on Gabriel. Now that I am back on my feet, back to my own Normal, my focus is back on him. It isn't enough to give your child a stable home, food and clothes. Hugs, kisses and unconditional love are a standard. Children need more. They need unconditional support, guidence, but mostly to know that they are put first. Children need to know they are important. These are the standards I set for myself. These standards are not what makes me a Super Mom. I am a Super Mom because I fight to give my children these standards while I am in pain or struggling to get through the day. Gabriel is a Super Kid because of how well he does cope with how my health affects him. Struggling doesn't make him less it makes him more.
Before the test began last night Master Jason asked the children "Who is nervous?" Gabriel was honest and raised his hand and two other children raised their hands. His instructor was slightly shocked when he saw Gabe's hand in the air but said "It is good to be nervous. It means you want it!" Smart man! I am going to use his words as a reminder to Gabe every time he feels nervous and doubts himself.
Wednesday, April 3, 2013
Batteries Included
When one of Lucas' trains has this printed on the package I am more eager to buy it over the othere toy that does not have batteries included. As a Mom I love the phrase "batteries included".
I remember the first time I told Leo that I have a battery inside of me. I don't think it was a selling point for our budding relationship. I was always impressed at his non freak out reaction. Later, months later, he told me how he misunderstood the whole conversation. He relayed a conversation to me that he had with his mother the next day. He thought I was trying to tell him I had a fake leg and that I was robotic. For me one of the selling points on Leo was how well he handled the information and even though I later found out that he was freaking out I understood how perfectly rational it was. I mean it is one thing to handle a loved one's health issue AFTER you have fallen in love but to walk into a relationship with someone who has a health issue and care for them BEFORE falling in love. That shows character. Back then I had my RSD under control using my SCS. This was before my back pain issues. Another selling point, one of the ultimate tests Leo aced. My first big flair was an event that sold me on the greatness of Leo. His nerves were wreaked and yet he took care of me in the way I wanted to be taken care of. He even told his Mother that I don't like it when everyone overreacts to my pain, that for me it is "normal" and "soon will pass". He retrieved my crutches from the trunk of my car but panicked that he couldn't find my SCS case, I had to use my crutches to go out and show him (again) what it looked like and where to find it. After I was set up on the couch, my leg elevated I knew that while this was my "normal" it also showed that I finally found a man that could take care of me and love me the way I needed. That was just the beginning and I am happy to say that our story is one that lasts through all the drama life with RSD brings.
Back then my first SCS battery had a life span of 5-7 years, depending on usage. When the battery ran out I would need a surgery to replace it. Now as technology has advanced I have a battery they call the mini. The mini is about half the size of the old battery, nicely hidden. It is also a rechargable battery. It is a "cordless" rechargable battery, very cool considering the first generation of recharables needed to have one end in an electrical outlet while the paddle was taped to my skin and was sensitive to movement. If I sneezed or moved an arm to scratch my nose it would shift off the sweet spot and we would need to recenter the paddle. What a pain in the butt! Now my new mini has this cordless rechargable system. While my battery is a mini the recharge system is large and bulky. The fact that I can walk around while charging my battery and the sweet spot is not so sensitive is the selling point.
Last night, I woke with a start at 1:30am from a strange dream. I dreamt that my battery was beeping and vibrating. I think it was my subconscience reminding that I need to recharge. My gut instincts were to jump out of bed, run to my closet and pull down the black case that keeps my charging system. Unpractical considering I would wake up Leo and it could wait till morning. I tossed and turned till I fell back to sleep worried I would forget by morning. Understand, that while the mini battery is recharable if I let the charge fully run out then I would need a surgery to replace it. Which is why my nerves were jumbled from the dream.
Waking up this morning I couldn't help but remember what I needed to do. I quickly pulled some clothes on and then pulled the black case from the top shelf in my closet. I opened the case, pulled out the paddle and the charge system. I slipped the paddle between my pants and my skin, placing it over the area where my battery is. I connected the cord to the charge system and squeezed it into my pants pocket. This was at 6:45am and by 8:20am the system beeped to let me know it was fully charged. During this time I was able to get the boys up and moving. I made breakfast, and lunch boxes. I watched Gabriel walk to school and got Lucas dressed for school. It was a very productive morning considering everything.
Batteries Included is one of our family jokes. Robo Cop, Robo Mom is another one of our jokes. Life with RSD is very serious but you have to lighten the mood. You cannot go around always being depressed. We find the fun where we can but remember that taking care is not a joking matter. I remember when everyone started to prepare for Hurricane Sandy. Food, water, candles, and batteries for flashlights. When I had to prepare I included recharging my own battery. I think of it this way, if you need batteries for a flashlight then I need to take care of my own battery. I am Robo Mom, I have the battery and electrical leads in my body to show for it. The beautiful kids and husband to keep me moving. The ability to laugh at myself and my condition while still taking it as seriously as it deserves. That is what makes me who I am. I am batteries included!
I remember the first time I told Leo that I have a battery inside of me. I don't think it was a selling point for our budding relationship. I was always impressed at his non freak out reaction. Later, months later, he told me how he misunderstood the whole conversation. He relayed a conversation to me that he had with his mother the next day. He thought I was trying to tell him I had a fake leg and that I was robotic. For me one of the selling points on Leo was how well he handled the information and even though I later found out that he was freaking out I understood how perfectly rational it was. I mean it is one thing to handle a loved one's health issue AFTER you have fallen in love but to walk into a relationship with someone who has a health issue and care for them BEFORE falling in love. That shows character. Back then I had my RSD under control using my SCS. This was before my back pain issues. Another selling point, one of the ultimate tests Leo aced. My first big flair was an event that sold me on the greatness of Leo. His nerves were wreaked and yet he took care of me in the way I wanted to be taken care of. He even told his Mother that I don't like it when everyone overreacts to my pain, that for me it is "normal" and "soon will pass". He retrieved my crutches from the trunk of my car but panicked that he couldn't find my SCS case, I had to use my crutches to go out and show him (again) what it looked like and where to find it. After I was set up on the couch, my leg elevated I knew that while this was my "normal" it also showed that I finally found a man that could take care of me and love me the way I needed. That was just the beginning and I am happy to say that our story is one that lasts through all the drama life with RSD brings.
Back then my first SCS battery had a life span of 5-7 years, depending on usage. When the battery ran out I would need a surgery to replace it. Now as technology has advanced I have a battery they call the mini. The mini is about half the size of the old battery, nicely hidden. It is also a rechargable battery. It is a "cordless" rechargable battery, very cool considering the first generation of recharables needed to have one end in an electrical outlet while the paddle was taped to my skin and was sensitive to movement. If I sneezed or moved an arm to scratch my nose it would shift off the sweet spot and we would need to recenter the paddle. What a pain in the butt! Now my new mini has this cordless rechargable system. While my battery is a mini the recharge system is large and bulky. The fact that I can walk around while charging my battery and the sweet spot is not so sensitive is the selling point.
Last night, I woke with a start at 1:30am from a strange dream. I dreamt that my battery was beeping and vibrating. I think it was my subconscience reminding that I need to recharge. My gut instincts were to jump out of bed, run to my closet and pull down the black case that keeps my charging system. Unpractical considering I would wake up Leo and it could wait till morning. I tossed and turned till I fell back to sleep worried I would forget by morning. Understand, that while the mini battery is recharable if I let the charge fully run out then I would need a surgery to replace it. Which is why my nerves were jumbled from the dream.
Waking up this morning I couldn't help but remember what I needed to do. I quickly pulled some clothes on and then pulled the black case from the top shelf in my closet. I opened the case, pulled out the paddle and the charge system. I slipped the paddle between my pants and my skin, placing it over the area where my battery is. I connected the cord to the charge system and squeezed it into my pants pocket. This was at 6:45am and by 8:20am the system beeped to let me know it was fully charged. During this time I was able to get the boys up and moving. I made breakfast, and lunch boxes. I watched Gabriel walk to school and got Lucas dressed for school. It was a very productive morning considering everything.
Batteries Included is one of our family jokes. Robo Cop, Robo Mom is another one of our jokes. Life with RSD is very serious but you have to lighten the mood. You cannot go around always being depressed. We find the fun where we can but remember that taking care is not a joking matter. I remember when everyone started to prepare for Hurricane Sandy. Food, water, candles, and batteries for flashlights. When I had to prepare I included recharging my own battery. I think of it this way, if you need batteries for a flashlight then I need to take care of my own battery. I am Robo Mom, I have the battery and electrical leads in my body to show for it. The beautiful kids and husband to keep me moving. The ability to laugh at myself and my condition while still taking it as seriously as it deserves. That is what makes me who I am. I am batteries included!
Tuesday, April 2, 2013
First Day!
This morning I set my alarm early. My nerves were slightly jumbled. I was excited. Today was Lucas' first day at the Pre-School program in our school district! My nerves were jumbled because I had to get him moving faster that his old schedule. Lucas can be a very cranky easily frusterated when his routine is changed or just when things don't go his way. Luckily he woke up easily and sat at the table nicely, only a little fussy, for his breakfast. We had one minor meltdown this morning when I was gathering the items for his lunch box. He wanted them NOW even after I explained what they were for and he would get them later, he wanted them NOW for breakfast. After a 5 minute battle I switched gears and went with distraction. "Where are your trains?" Sometimes a Mom has to pick her battles. Our next little tiff was when I placed the finished lunch box in the fridge. Lucas wanted it to go into his backpack. He was not willing to listen to me explain. This was a moment that his language delay becomes a big issue. I explained three times that it was "too early" to put the lunch box in the backpack. I held my ground, it was only 7:30am and way too early for the lunch box to be packed away. In these moments it helps that I get on his eye level (tough when my leg hurts) and find a way to calm him down so he can listen to me.
We drove Lucas to school together for this first day. Of course I took some pictures! This is a big day for all of us. Lucas wasn't confused he knew he was going to the "Big School" today. My only real fear was that the teachers won't understand him when he talks but because she is experienced with children who have special needs and speech issues I am comfortable that she and Lucas will figure it out. Lucas is very different from Gabriel, when Gabe was this age, heck when Gabe was 7 years old he had extreme seperation anxiety. Lucas has zero seperation anxiety! Today I had to ask for a kiss when I was leaving him at the school. Lucas was happy with the toy vacuum in his new class and the i-pad at his desk.
Lucas' teacher sends out a daily email stating what the kids have done that day. Today she also sent me an email to let me know how his first day went. I quote "Lucas had a pretty good first day. He was disappointed when we couldn’t play all day but caught on to the routine pretty quicklyJ Each day will get better and better." This three sentence feedback on Lucas' first day may seem pretty basic but it is a fount of information for me. First, it tells me that the teacher does take into concern my roll in Lucas' daily educational life. Second it tells me that she understands how these small details are needed. Lastly, the information tells me what I already know. Lucas is used to a "play school" type of setting, she probably had to deal with a small meltdown when trying to get him involved in the schedule but he soon understood that certain things are expected of him. I know when Lucas came home he was super excited about his day so what ever the meltdown was about he hasn't held a grudge (Lucas can hold some grudges!)
By Friday I will be looking for his speech schedule. I want to sit in on a session or two a month so I know how to carry over the work being done. Leo and I have been enjoying the amount of speech coming out of Lucas lately that we haven't worried ourselves about his clarity. Sometimes you need to learn how to switch off of being a teacher and remain as a parent. I especially needed to spend some time only enjoying Lucas instead of constantly working with him, or worrying about him. I am continueing my "break" as his teacher till Friday when I will begin to work with him again. Until then, I will simply be Mommy.
We drove Lucas to school together for this first day. Of course I took some pictures! This is a big day for all of us. Lucas wasn't confused he knew he was going to the "Big School" today. My only real fear was that the teachers won't understand him when he talks but because she is experienced with children who have special needs and speech issues I am comfortable that she and Lucas will figure it out. Lucas is very different from Gabriel, when Gabe was this age, heck when Gabe was 7 years old he had extreme seperation anxiety. Lucas has zero seperation anxiety! Today I had to ask for a kiss when I was leaving him at the school. Lucas was happy with the toy vacuum in his new class and the i-pad at his desk.
Lucas' teacher sends out a daily email stating what the kids have done that day. Today she also sent me an email to let me know how his first day went. I quote "Lucas had a pretty good first day. He was disappointed when we couldn’t play all day but caught on to the routine pretty quicklyJ Each day will get better and better." This three sentence feedback on Lucas' first day may seem pretty basic but it is a fount of information for me. First, it tells me that the teacher does take into concern my roll in Lucas' daily educational life. Second it tells me that she understands how these small details are needed. Lastly, the information tells me what I already know. Lucas is used to a "play school" type of setting, she probably had to deal with a small meltdown when trying to get him involved in the schedule but he soon understood that certain things are expected of him. I know when Lucas came home he was super excited about his day so what ever the meltdown was about he hasn't held a grudge (Lucas can hold some grudges!)
By Friday I will be looking for his speech schedule. I want to sit in on a session or two a month so I know how to carry over the work being done. Leo and I have been enjoying the amount of speech coming out of Lucas lately that we haven't worried ourselves about his clarity. Sometimes you need to learn how to switch off of being a teacher and remain as a parent. I especially needed to spend some time only enjoying Lucas instead of constantly working with him, or worrying about him. I am continueing my "break" as his teacher till Friday when I will begin to work with him again. Until then, I will simply be Mommy.
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