Three exlamation points to show the excitement for National Rare Disease Day!!!
This week Gabe had the word 'awkward' in his spelling list. I find it fitting for Rare Disease Day. Many people find it awkward to bring up the conversation about what it is that is plaquing the person in their life that has a health issue that they have never heard of before. It can feel like an awkward topic when you have known this person for most of their life yet you are still confused about what is going on with their health. As someone who has lived with a rare disease it can be awkward when you want to talk about your disease but know that the person is afraid to hear the truth.
A day like today is meant to break down those awkward barriers. It is the conversation opening to say "Hey, is RSD a rare disease? How can that be since it has been around since the Civil War? How are you feeling today?" Yes this can feel very awkward if you have never taken the time before or if the person is new in your life.
I promise you that you will feel awkward at first but at the end of the day you will have made a difference in that persons life. They will feel a little less invisiable and more accepted to know that you cared enough to break through the awkward phase to let them know you care. You will empower them. You will let them know that you believe "Even a rare disease needs a cure!"
http://rarediseaseday.us/
Showing posts with label RSD. Show all posts
Showing posts with label RSD. Show all posts
Friday, March 1, 2013
Wednesday, February 20, 2013
Roast it!
Certain days I struggle with staying on my feet long enough to cook a meal. I have found the simplest solution - other than ordering take out - have some easy meals to put in the oven around lunch time and just let it roast or braise all day. Let's be honest, I cook meals like this at least twice a week! They are tasty, nutritious, and cost affective too!
Plenty of times when my husband sits down to one of these meals he looks at me like I am Wonder Woman. He doesn't know how I do it, pull off a meal like this while hurting and taking care of the kids. A few times I tried to let him in on the secret, these are simple meals that take little to no effort but he does not believe me.
When every minute standing up counts then you have to be frugal with your time. Standing at the stove for 30 minutes does not cut it! You need to find a meal that takes you about 10-15 minutes prep time and to be able to walk away for at least an hour.
Roast it! I like to roast a chicken that can feed my family two seperate meals. For us this means 6lbs roughly of a whole chicken. A day or two before pull the chicken out of your freezer and into the refriderator to thaw. I usually pull it out on a Sunday knowing that I will need it by Wednesday. The day I want to roast it I pull it out of the fridge to come to room temperature, about 2 hours because my fridge is really cold.
Plenty of times when my husband sits down to one of these meals he looks at me like I am Wonder Woman. He doesn't know how I do it, pull off a meal like this while hurting and taking care of the kids. A few times I tried to let him in on the secret, these are simple meals that take little to no effort but he does not believe me.
When every minute standing up counts then you have to be frugal with your time. Standing at the stove for 30 minutes does not cut it! You need to find a meal that takes you about 10-15 minutes prep time and to be able to walk away for at least an hour.
Roast it! I like to roast a chicken that can feed my family two seperate meals. For us this means 6lbs roughly of a whole chicken. A day or two before pull the chicken out of your freezer and into the refriderator to thaw. I usually pull it out on a Sunday knowing that I will need it by Wednesday. The day I want to roast it I pull it out of the fridge to come to room temperature, about 2 hours because my fridge is really cold.
Roast Chicken done my way:
Preheat oven to 450 degrees. I like to use a 5-7 pound chicken, depending on how much leftovers I want. You will need about 3-4 tablespoons butter, salt, pepper, garlic powder, garlic cloves, 1 cup white wine or chicken broth, onion, carrot, and celery. I also like to use paprika. In a dish soften 3 tablespoons butter and mix in salt, pepper, garlic powder and paprika. Use your finger to make a pocket between the breast and skin on either side of the breast bone. Rub the butter mixture into each pocket and on the skin. Inside the cavity add one tablespoon butter, half onion, one carrot cut in half, one celery cut in half and a garlic clove.
In the bottom of your roasting pan add your liquid, quartered onion and tablespoon butter. Put chicken in the oven and immediately reduce temperature to 400 degrees. Roast for one hour - do not open the door! Check the chicken and baste with juices (if your pan is dry add another cup of liquid basting as you add). Reduce temperature to 350 degrees and resume cooking till a meat thermometer registers 160degrees, this may take about 45-90 additional minutes depending on the size of your chicken. Remove from oven and cover to finish cooking through and to allow the juices to redistribute, about 30 minutes.
If you cannot stand for 30minutes to make your side dishes then roast your veggies! After I put the chicken in the oven I sit at the table with a cutting board, knife, and veggie peeler. In a bowl I have potatoes, onions, and carrots. I have an additional bowl for the scraps of food and my roasting pan. Depending on how I feel this process can take me 30 minutes but at least I am off my feet. When done cutting my vegetables I take the pan into the kitchen and toss them with some olive oil, salt and pepper. When it is time for me to check the chicken I place the pan on a rack below the chicken. When it is time to pull the chicken out of the oven I place the pan under the broiler to get my veggies nice and brown, about 2-5 minutes keep an eye on them, pull out of oven and cover with foil. If you are feeling ambitous because you now have saved a lot of energy then go ahead and use the drippings from the chicken to make gravy! Add some crusty bread and you have a meal fit for company!
ps. Leftover chicken can be diced and used in many different casseroles, my favorite is chicken pot pie that also makes good use of your left over gravy and veggies!
Friday, February 15, 2013
RSD United
Every single person in this world needs to feel supported. When you are dealing with a chronic illness you need that support more than ever. You need a strong group of family and friends who are willing to learn about your illness, let you vent about the horribleness, help you laugh to ease the pain, lend a shoulder when you need to cry, zip their lips when you want to pretend to be normal, and stand by your side even when you are not fun to hang out with. If you don't have that support then it will be very easy to crawl into a hole and become overwhelmed with self pity.
In my opinion the first 5 years of RSD are the hardest. You will need to mourn the life you once had and your dreams for the future. Learning to live within this "New Normal" is mind boggling. It becomes harder when you need to live through this pain and find that those you thought of as friends just stop coming around because "you aren't fun anymore." You get angry and you feel a sense of loneliness you never imagined. Your friends might say "Call me" but really what you need is for them to reach out to you, after all they know you are going through something painful and scary.
Family and friends can be afraid or confused by your RSD diagnosis. It saddens them to watch you struggle with so much pain. A friend who used to be so filled with life they now see a different person. They may not know HOW to help and support you!
If you or someone you care about has been diagnosed with RSD the first step is to get support. Support makes a bigger difference than you could ever imagine. Sadly for some people it could be life or death. We all need support in life but someone with a chronic illness needs that support to make each day a little brighter, a little happier, a little easier to deal with pain.
In the beginning I had my parents and my sister and few friends who didn't get scared. I understand that back then we were all just teenagers and lacked the maturity to properly deal with the situation. Plus back when I was first diagnosed we didn't have a lot of information available to help bring Awareness to those in my life. For those in my small support system it felt like we were finding our way in the dark, not being able to see the big picture.
Growing up with RSD has taught me exactly how lonely this process can be and how important it is to reach out to others. Over the last 5 years I would go onto various on-line support groups, reaching out to others so they can see that it is possible to fight RSD and live a happy life. Then about a year and a half ago I was invited to join this one support group - RSD United. The group was founded by someone else who was diagnosed way too young with RSD and yet she found a way to live a happy life and created RSD United as a support group to help others not feel alone. That is what a support group does, it makes you feel supported and not alone! Within this group I have been able to make many on-line friendships with people who feel like I do. That just because RSD is painful it doesn't have to mean the end of your life. You just have to learn HOW to live within your new normal. With the help of this group you do not need to feel alone. We become United in our fight against RSD.
Today my circle of support has expanded. I have my husband who is my rock. I am blessed to have his loving hand and endless support. He knows what I need and is always next to me during each hurdle I have to climb. Simply an amazing man to have my back. With my husband I have also gained his parents and his sister. I will always have the support of my own parents, they are only a phone call away if I am in need. My sister who lives far away is always available to me. My best friend who lives an hour away but text messages me daily! I live within a community who helped deliver home cooked meals when I was unable to provide for my family. I can feel the prayers of the many who simply couldn't do more than send their love and hopes up to God's ears! I might have felt alone during my first few years of living with RSD but I cannot say that anymore. I am blessed with the amount of love and support that surrounds me. And while my son's cannot support me during my pain their smiles and their laughter are the best medicine anyone could ask for!
I have found that a big reason why RSD'ers lack in support is the fact that "You don't look sick" or "I never heard of that before." Trust me this can be very frustrating to hear. Everyone knows about Cancer and most know about diseases like Lupus and Multiple Sclerosis but Reflex Sympathetic Dystrophy Syndrome? What is that? Please do not compare these disorders it minimizes there horribleness to get into a debate about which one is worse than the other. After all, you cannot compare an Apple to an Orange, they are both fruit but from different trees. So please do not compare RSD to Cancer - it is not a fair comparison.
"But you don't look sick!" I have heard that from some of the people closest to me. I think it is a compliment but more often it is their excuse to not support you. Honestly, I didn't get their point of view till I read an article titled "The Spoon Theory" by Christine Miserandino. The article is a type of recap of a conversation she had one evening with her best friend. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ If you have taken the time to read my blog then you should go one step farther by reading this article. If you are the one living with RSD or you are someone who has a loved one with RSD it can open up a discussion that felt off limits before.
I hope everyone can find a great support group or become that support person the RSD'er in your life needs. It makes the biggest difference in dealing with RSD.
Monday, February 11, 2013
Monday - Get Organized Day
Get organized.
Yesterday I had decided that today would be the day I would begin to be more organized. I wanted to make Monday's into my "Get Organized" and blog about it day. I even began a rough draft of what I wanted to say and what I needed to get done. 2012 was a rough and messy year. In it's wake we are left with disorganization not just throughout the house but in our daily routines. Besides the weekends Monday is the only day during the week that we don't have something else going on. I am going to change that.
God laughs when we make plans.
Last night I lay in bed unable to sleep. I am usually the person who closes their eyes and within minutes fast asleep. I began a headache and after an hour of trying to sleep I got out of bed to take an Advil. Back in bed I closed my eyes and tried to use my relaxation therapy, imagining myself at the beach. I must have dozed off because when Lucas called out to me it was an hour later. I went into his room hoping that I wouldn't disturb my husbands sleep. Lucas has dry skin and this is what woke him up, he was itchy. I laid down with him and rubbed at each spot he started to scratch but after 10 minutes I realized that this was not working. I was going to need to give him some allergy medicine. Lucas insisted on coming down to the kitchen with me. I sat him on the counter and when he saw that I was going to the medicine cabinet he started screaming NO and covered his mouth. After a few minutes of trying to convince him that this medicine was just like candy (at 2:30am a Mom has to do what a Mom has to do) I gave up and wrapped my arms around him in a hug. When I pulled back to look him in the face he had a bloody nose. Adding to the screams of no about the medicine I now had to deal with the screams and a fight because he wouldn't let me near his face to clean it up or stop the bleeding. Lucas is strong and fast. I could not hold him still and in fact each time I tried to put a tissue to his nose I ended up smearing the blood on his cheeks. Finally I laid him on the kitchen floor and pinned him down. After that I wasn't going to fight him about taking the medicine. I gave him a fruit snack pouch and sent him to the couch with cartoons. I went back to the kitchen and smashed the chewable to a powder and mixed it with his apple juice. By 3:45am we were back in bed.
Exhausted...
Obviously I was exhausted in the morning but the kids needed to have breakfast and I needed to get Gabe ready for school. Thankfully we had a delay opening because of freezing rain. That also meant that Lucas was not going to his daycare/playgroup for the morning and he would be hanging out with me. So much for my plans!
I did accomplish one goal, almost finished but close enough that I am counting it! I re-organized and cleaned up the toy room. This project took twice as long because Lucas thought it was fun to play with the toys right after I placed them on shelves. I am proud of the work I accomplished in the toy room today. I once was told that we have a "Toys R Us in the toyroom" so imagine all the shelves empty except for a few pieces of toys and the toy box filled but also with random non toy things like a water bottle or crackers or a tooth brush. Now I have the shelves organized and not just a pile of toys thrown on top to get them off the floor. I vacuumed out the toybox and placed the odd bits and pieces in the kitchen sink. I also trashed some broken, tired toys and those annoying McDonald's toys. The room itself is not really big but all the same it is now done. I pray that it lasts for a few days!
Betty Crocker Image.
I used to be known as the "Betty Crocker" type, home-cooked family sit down meals each night, I would help Gabe with homework and studies, house tidy if not clean, and complete with the happy husband. GULP....I have a lot of work to do if I want to regain that image!
I know many people would sit back and say "Big deal! You don't work. You are a stay at home mom so your job is to maintain the house and raise the happy healthy kids." What do I say to that? "WRONG!" Look a little beneth the surface and you will find a woman who deals with a severe form of chronic pain daily. Life with Reflex Sympathetic Dystrophy can be very fullfilling but it has it's challenges. As much as I can plan something I need to plan on not being able to do it. There is a good reason my home is in shambles. During 2012 I had 2, yes 2, Spinal Cord Stimulator surgeries. That means we had to reprioritize and learn to deal with a less than perfect home. I think this was hardest on Gabe and Leo. I spent most of the year in bed or on the couch unable to do more than wipe my own butt.
Future Tasks
One task I need to work on is organizing my plans for Lucas. I have a mental list of what I want to do with him and for him. I need to call our insurance company and see if we can get him private speech therapy. Lucas' section of the toyroom needs the most work as his puzzles and games have missing pieces that need to be found. I have phone calls to make to the school district about the progress of his evaluation, we have till the end of the month before decisions will be made.
Another task is to work on our laundry situation. Ugh! Once you get so far behind on laundry it feels impossible to catch up. Socks are the worst! I hate matching socks so I created a basket just for socks. However to add to my laundry list the whole family last week had the stomach flu so I know that I need to go through and wash all the bedsheets and blankets just to properly disinfect the house.
Gabriel has really been hurt during this last year. He is at an age to understand that I am not well and that surgery is serious. Since my health slipped last year his grades began to drop. The first marking period of this school year his grades hit the bottom and we are having him evaluated by the child study team at the school. In my gut I believe his issues at school have to deal with his concern for my health and missing me while I was recovering from surgery. I want to give him every chance at getting extra help so that he can regain his academic standings. I worry about him daily. Gabriel is a bright funny and imaginative child who can spin a story like a pro. He can spend half an hour reading or at the table creating a new craft. Next week I meet with the child study team to review his evaluations and we will go from there about what else he needs from us.
I need to organize my life. In the broadest and most general of terms. I feel scattered. Before I went on disability each day had it's own set of routines and schedules with goals to be met daily. Now most days I have the simple; take care of kids, clean house, cook dinner and if I am lucky I get to spend quality time with my husband. All of this really depends on how I wake up in the morning. Half the time my daily list is even more simple; shower, sit on the couch, and decide what to warm up for dinner or what my husband can pick up after work.
Dream tasks: Train puppy, maintain clean kitchen, organize closet, organize kids closets, dust furniture weekly, fix up the spare bedroom, and oh so much more!
Obviously I can not get this house back on track within one day, one week, even one month. Maybe another Super Mom could but not me.
Yesterday I had decided that today would be the day I would begin to be more organized. I wanted to make Monday's into my "Get Organized" and blog about it day. I even began a rough draft of what I wanted to say and what I needed to get done. 2012 was a rough and messy year. In it's wake we are left with disorganization not just throughout the house but in our daily routines. Besides the weekends Monday is the only day during the week that we don't have something else going on. I am going to change that.
God laughs when we make plans.
Last night I lay in bed unable to sleep. I am usually the person who closes their eyes and within minutes fast asleep. I began a headache and after an hour of trying to sleep I got out of bed to take an Advil. Back in bed I closed my eyes and tried to use my relaxation therapy, imagining myself at the beach. I must have dozed off because when Lucas called out to me it was an hour later. I went into his room hoping that I wouldn't disturb my husbands sleep. Lucas has dry skin and this is what woke him up, he was itchy. I laid down with him and rubbed at each spot he started to scratch but after 10 minutes I realized that this was not working. I was going to need to give him some allergy medicine. Lucas insisted on coming down to the kitchen with me. I sat him on the counter and when he saw that I was going to the medicine cabinet he started screaming NO and covered his mouth. After a few minutes of trying to convince him that this medicine was just like candy (at 2:30am a Mom has to do what a Mom has to do) I gave up and wrapped my arms around him in a hug. When I pulled back to look him in the face he had a bloody nose. Adding to the screams of no about the medicine I now had to deal with the screams and a fight because he wouldn't let me near his face to clean it up or stop the bleeding. Lucas is strong and fast. I could not hold him still and in fact each time I tried to put a tissue to his nose I ended up smearing the blood on his cheeks. Finally I laid him on the kitchen floor and pinned him down. After that I wasn't going to fight him about taking the medicine. I gave him a fruit snack pouch and sent him to the couch with cartoons. I went back to the kitchen and smashed the chewable to a powder and mixed it with his apple juice. By 3:45am we were back in bed.
Exhausted...
Obviously I was exhausted in the morning but the kids needed to have breakfast and I needed to get Gabe ready for school. Thankfully we had a delay opening because of freezing rain. That also meant that Lucas was not going to his daycare/playgroup for the morning and he would be hanging out with me. So much for my plans!
I did accomplish one goal, almost finished but close enough that I am counting it! I re-organized and cleaned up the toy room. This project took twice as long because Lucas thought it was fun to play with the toys right after I placed them on shelves. I am proud of the work I accomplished in the toy room today. I once was told that we have a "Toys R Us in the toyroom" so imagine all the shelves empty except for a few pieces of toys and the toy box filled but also with random non toy things like a water bottle or crackers or a tooth brush. Now I have the shelves organized and not just a pile of toys thrown on top to get them off the floor. I vacuumed out the toybox and placed the odd bits and pieces in the kitchen sink. I also trashed some broken, tired toys and those annoying McDonald's toys. The room itself is not really big but all the same it is now done. I pray that it lasts for a few days!
Betty Crocker Image.
I used to be known as the "Betty Crocker" type, home-cooked family sit down meals each night, I would help Gabe with homework and studies, house tidy if not clean, and complete with the happy husband. GULP....I have a lot of work to do if I want to regain that image!
I know many people would sit back and say "Big deal! You don't work. You are a stay at home mom so your job is to maintain the house and raise the happy healthy kids." What do I say to that? "WRONG!" Look a little beneth the surface and you will find a woman who deals with a severe form of chronic pain daily. Life with Reflex Sympathetic Dystrophy can be very fullfilling but it has it's challenges. As much as I can plan something I need to plan on not being able to do it. There is a good reason my home is in shambles. During 2012 I had 2, yes 2, Spinal Cord Stimulator surgeries. That means we had to reprioritize and learn to deal with a less than perfect home. I think this was hardest on Gabe and Leo. I spent most of the year in bed or on the couch unable to do more than wipe my own butt.
Future Tasks
One task I need to work on is organizing my plans for Lucas. I have a mental list of what I want to do with him and for him. I need to call our insurance company and see if we can get him private speech therapy. Lucas' section of the toyroom needs the most work as his puzzles and games have missing pieces that need to be found. I have phone calls to make to the school district about the progress of his evaluation, we have till the end of the month before decisions will be made.
Another task is to work on our laundry situation. Ugh! Once you get so far behind on laundry it feels impossible to catch up. Socks are the worst! I hate matching socks so I created a basket just for socks. However to add to my laundry list the whole family last week had the stomach flu so I know that I need to go through and wash all the bedsheets and blankets just to properly disinfect the house.
Gabriel has really been hurt during this last year. He is at an age to understand that I am not well and that surgery is serious. Since my health slipped last year his grades began to drop. The first marking period of this school year his grades hit the bottom and we are having him evaluated by the child study team at the school. In my gut I believe his issues at school have to deal with his concern for my health and missing me while I was recovering from surgery. I want to give him every chance at getting extra help so that he can regain his academic standings. I worry about him daily. Gabriel is a bright funny and imaginative child who can spin a story like a pro. He can spend half an hour reading or at the table creating a new craft. Next week I meet with the child study team to review his evaluations and we will go from there about what else he needs from us.
I need to organize my life. In the broadest and most general of terms. I feel scattered. Before I went on disability each day had it's own set of routines and schedules with goals to be met daily. Now most days I have the simple; take care of kids, clean house, cook dinner and if I am lucky I get to spend quality time with my husband. All of this really depends on how I wake up in the morning. Half the time my daily list is even more simple; shower, sit on the couch, and decide what to warm up for dinner or what my husband can pick up after work.
Dream tasks: Train puppy, maintain clean kitchen, organize closet, organize kids closets, dust furniture weekly, fix up the spare bedroom, and oh so much more!
Obviously I can not get this house back on track within one day, one week, even one month. Maybe another Super Mom could but not me.
Sunday, February 10, 2013
Bringing you up to date on Lucas.
As parents we all do it. We wait for that moment when our baby talks to us. It is often the dream during pregnancy and question of "Will they say Mama or Dada or something else first?" Grandparents kiss the baby and quietly repeat "Say Nana" in hopes that they can beat out the Mom. It is this loving and typical play that fills much of the babies first year of life.
When I had Gabriel we all enjoyed these precious milestones. The first smile, coo, and the babbled mama. I remember looking into his face and him mimicking my oos and aas and my mouth forming a round circle. The joy of hearing the repeated mamamamamama or dadadadada and being convinced he was calling me! Our family story has always been "Once Gabe started talking he wouldn't stop. He even talked in his sleep!" Yes, we had to turn off the baby monitor in his room because he talked in his sleep.
Lucas
They always say "don't compair your children". They are right unfortunately we only had Gabe and his rapid speech to use as a guideline. So when Lucas was 12 months old and still did not say mama I was worried. I was told to "wait", "boys tend to talk later than girls" and to "remember that Gabe was an early talker". At 15 months I heard "mama" once and "dada" a handful of times. I was told "It's coming!" At 18 months I was told that if we didn't have a handful of words by his 24 month appointment then we could start evaluating but still we shouldn't worry because he was hitting his gross motor milestones (on the late side but still within range.)
Mothers instinct told me different. Something was wrong. I read what I could find on reasons for late talking or no talking. What I found was information on Autism. He didn't have all or most of the red flags for autism but once that was in my head I couldn't dislodge it.
What most people didn't understand was that he wasn't even babbling. When I seriously sat down to think about what sounds he was making I realized that besides screaming at me he only made ooo and aaa sounds, basically he coo'd or screamed. He would take me by the hand to lead me to what he wanted. If he wanted a banana I would say "Oh you want a banana. This is a banana. Lucas wants a banana. Say Banana." The screaming would begin. I would endure and repeat "Say Banana. Lucas wants a Banana." I didn't care if he called it a mama, I wanted him to TRY but all I received back was more screaming.
Many nights I went to bed feeling frusterated and exhausted. It is stressful to spend your day having a toddler scream at you for their every want. I felt like a horrible mother because I was stressed out over spending time with my child! When I tried to vent to family or friends they didn't get it because they never spent a serious amount of time with him - or they thought I was being to harsh because "Sometimes kids don't talk till they are 3 years old!"
Enough!!
One day I had enough. I talked it out with my husband and told him what I read. He didn't want to hear any of it. His child was perfect and I wasn't a doctor, in fact our pediatrician said to just wait and see! Soon though he agreed to let me just have him evaluated and to see what comes from it. The next day I called our pediatrician and he said that we could have Lucas checked out with the Speech - Language Lab at the hospital. I called and they told me about the 3-6month wait list. Wait list? I told them I didn't want to wait that long and I was told about Early Intervention. I called my pediatrician back and he said "Go for it."
Early Intervention (EI). EI is a birth till Three years old goverment program to help children with significant developmental delays. EI is provided under part C of IDEA - Individuals with Disabilities Education Act.
As scared as I was EI made the process easy. They first evaluated him - basically played with him in ways to elicit sounds and to see what he was able to do. They talked to Leo and I about a typical day and asked "Besides what sounds he made today for us are there any other sounds he makes?" Okay, yes I asked them to come in because I am worried about Lucas not talking but when I was asked this question I thought it odd. What sounds he makes? What other sounds he makes? Did he even make a sound during this last hour? "No, he doesn't make sound attempts he just coo's or screams."
Yes we qualified for services. We were also told to have his hearing tested because of concerns that he didn't always turn to my voice. We were to receive 2 one hour sessions a week with a developmental interventionist and 1 one hour session with a speech language pathologist (SLP). Our world had changed before Lucas was 2 years old.
Going in depth about our therapy history will be a different post. The biggest question everyone asks is that "Now, a year later, have we seen significant progress?" YES! I have learned so much about Lucas during this past year. In September we received an extra weekly session with his SLP to focus even more on his speech. When you understand how HARD Lucas works and where he was at one year ago then you will understand that YES he has made significant progress and is still very far behind. In March 2013 Lucas will turn 3 years old and he currently has the language of an almost 2 year old but the clarity of his speech is still severely behind. What does than mean?
Milestones:
Parenting Magazine is a great place to understand developmental milestones. This is an article that properly talks about speech and language milestones. http://www.parenting.com/article/baby-speech-milestones?page=0,0 Lucas is currently somewhere between this 18-24month age range in his language. Someone close to him, and with a patient ear, will be able to understand his speech. He is just beginning to put two words together although this compromises his clarity even more so.
"18 to 22 months
Da-me-fo-bee.
You know your toddler is saying something amazing--if only you could understand it. In their second year, kids become masters of nonsensical speech, producing strings of elegant gibberish that sound like a faux version of adult conversation (often complete with inflection and hand gestures). She'll also be saying around 30 or so real words-but even those may not be crystal clear.
22 to 24 months
More milk.
By the time she turns 2, your toddler will likely be able to string two or three words together to make mini-sentences. A favorite to throw into the mix of the dozens of words in her growing vocabulary: "more." It's a sign that your kid is figuring out the ability of language to make things happen."
What is next?
IDEA part C ends when Lucas turns 3 years old. Then we will use services provided by IDEA part B and this will stay with him till age 21! This law basically makes it so that he MUST have access to help in Public School (as long as he qualifies).
We are in the middle of the process of being qualified for school services. My first step was made when I wrote a letter to the superintendent of the school district asking for help because I believe my child has special needs. OUCH! I don't think of Lucas as special needs, just special but this was the letter I had to write because at the core of his problem is that he does have special needs that a regular pre-school cannot provide him. Basically I have to get over that feeling of hurt the phrase "special needs" carries. The second step is to have him evaluated and work through the meetings. Then we have a meeting to discuss his IEP - Individual Education Plan.
Currently I have a long list of words Lucas says, words that are approximations, and sign language that he uses to help his communication. Daily I reinforce what we learn in therapy. I dream that one day he will be able to tell me a story even half as well as Gabriel. Until then? I enjoy each new sound and word like the first time I heard him say "Mommy".
When I had Gabriel we all enjoyed these precious milestones. The first smile, coo, and the babbled mama. I remember looking into his face and him mimicking my oos and aas and my mouth forming a round circle. The joy of hearing the repeated mamamamamama or dadadadada and being convinced he was calling me! Our family story has always been "Once Gabe started talking he wouldn't stop. He even talked in his sleep!" Yes, we had to turn off the baby monitor in his room because he talked in his sleep.
Lucas
They always say "don't compair your children". They are right unfortunately we only had Gabe and his rapid speech to use as a guideline. So when Lucas was 12 months old and still did not say mama I was worried. I was told to "wait", "boys tend to talk later than girls" and to "remember that Gabe was an early talker". At 15 months I heard "mama" once and "dada" a handful of times. I was told "It's coming!" At 18 months I was told that if we didn't have a handful of words by his 24 month appointment then we could start evaluating but still we shouldn't worry because he was hitting his gross motor milestones (on the late side but still within range.)
Mothers instinct told me different. Something was wrong. I read what I could find on reasons for late talking or no talking. What I found was information on Autism. He didn't have all or most of the red flags for autism but once that was in my head I couldn't dislodge it.
What most people didn't understand was that he wasn't even babbling. When I seriously sat down to think about what sounds he was making I realized that besides screaming at me he only made ooo and aaa sounds, basically he coo'd or screamed. He would take me by the hand to lead me to what he wanted. If he wanted a banana I would say "Oh you want a banana. This is a banana. Lucas wants a banana. Say Banana." The screaming would begin. I would endure and repeat "Say Banana. Lucas wants a Banana." I didn't care if he called it a mama, I wanted him to TRY but all I received back was more screaming.
Many nights I went to bed feeling frusterated and exhausted. It is stressful to spend your day having a toddler scream at you for their every want. I felt like a horrible mother because I was stressed out over spending time with my child! When I tried to vent to family or friends they didn't get it because they never spent a serious amount of time with him - or they thought I was being to harsh because "Sometimes kids don't talk till they are 3 years old!"
Enough!!
One day I had enough. I talked it out with my husband and told him what I read. He didn't want to hear any of it. His child was perfect and I wasn't a doctor, in fact our pediatrician said to just wait and see! Soon though he agreed to let me just have him evaluated and to see what comes from it. The next day I called our pediatrician and he said that we could have Lucas checked out with the Speech - Language Lab at the hospital. I called and they told me about the 3-6month wait list. Wait list? I told them I didn't want to wait that long and I was told about Early Intervention. I called my pediatrician back and he said "Go for it."
Early Intervention (EI). EI is a birth till Three years old goverment program to help children with significant developmental delays. EI is provided under part C of IDEA - Individuals with Disabilities Education Act.
As scared as I was EI made the process easy. They first evaluated him - basically played with him in ways to elicit sounds and to see what he was able to do. They talked to Leo and I about a typical day and asked "Besides what sounds he made today for us are there any other sounds he makes?" Okay, yes I asked them to come in because I am worried about Lucas not talking but when I was asked this question I thought it odd. What sounds he makes? What other sounds he makes? Did he even make a sound during this last hour? "No, he doesn't make sound attempts he just coo's or screams."
Yes we qualified for services. We were also told to have his hearing tested because of concerns that he didn't always turn to my voice. We were to receive 2 one hour sessions a week with a developmental interventionist and 1 one hour session with a speech language pathologist (SLP). Our world had changed before Lucas was 2 years old.
Going in depth about our therapy history will be a different post. The biggest question everyone asks is that "Now, a year later, have we seen significant progress?" YES! I have learned so much about Lucas during this past year. In September we received an extra weekly session with his SLP to focus even more on his speech. When you understand how HARD Lucas works and where he was at one year ago then you will understand that YES he has made significant progress and is still very far behind. In March 2013 Lucas will turn 3 years old and he currently has the language of an almost 2 year old but the clarity of his speech is still severely behind. What does than mean?
Milestones:
Parenting Magazine is a great place to understand developmental milestones. This is an article that properly talks about speech and language milestones. http://www.parenting.com/article/baby-speech-milestones?page=0,0 Lucas is currently somewhere between this 18-24month age range in his language. Someone close to him, and with a patient ear, will be able to understand his speech. He is just beginning to put two words together although this compromises his clarity even more so.
"18 to 22 months
Da-me-fo-bee.
You know your toddler is saying something amazing--if only you could understand it. In their second year, kids become masters of nonsensical speech, producing strings of elegant gibberish that sound like a faux version of adult conversation (often complete with inflection and hand gestures). She'll also be saying around 30 or so real words-but even those may not be crystal clear.
22 to 24 months
More milk.
By the time she turns 2, your toddler will likely be able to string two or three words together to make mini-sentences. A favorite to throw into the mix of the dozens of words in her growing vocabulary: "more." It's a sign that your kid is figuring out the ability of language to make things happen."
What is next?
IDEA part C ends when Lucas turns 3 years old. Then we will use services provided by IDEA part B and this will stay with him till age 21! This law basically makes it so that he MUST have access to help in Public School (as long as he qualifies).
We are in the middle of the process of being qualified for school services. My first step was made when I wrote a letter to the superintendent of the school district asking for help because I believe my child has special needs. OUCH! I don't think of Lucas as special needs, just special but this was the letter I had to write because at the core of his problem is that he does have special needs that a regular pre-school cannot provide him. Basically I have to get over that feeling of hurt the phrase "special needs" carries. The second step is to have him evaluated and work through the meetings. Then we have a meeting to discuss his IEP - Individual Education Plan.
Currently I have a long list of words Lucas says, words that are approximations, and sign language that he uses to help his communication. Daily I reinforce what we learn in therapy. I dream that one day he will be able to tell me a story even half as well as Gabriel. Until then? I enjoy each new sound and word like the first time I heard him say "Mommy".
Under Construction
It has been a long time since I have done anything with this blog site. In the most general of terms when life keeps moving lots of things change. My life has dramatically changed.
My goal is to begin blogging again. About my life with RSD and what it means for my family. I also have another topic to post about. Lucas my son has a speech disorder, strongly believed to be Childhood Apraxia of Speech along with a few co existing conditions adding to his speech delay. In one year he has made so much progress, but when you realize that at this time last year he could barely babble or say Mama and Dada you understand that a lot of progress is just the beginning for us. We still have a long road ahead.
Living with RSD and raising a child that has a special need. These are the things that set my family apart from the rest but we still have the normal day to day everyone else has. Clothes need washed, meals need to be made, homework must be done, bills paid, and my husband must go to work each day. Life goes on despite disabilites thrown in your path. Our disabilities just add to the mountain of To Do's. Doctor appointments, therapies, meetings with therapists/teachers, the added bills, diet suppliments, therapy homework, and so much more.
My goal is to reinvent this site. I want to talk about normal Wife/Mother type of things along with RSD life and raising a child with a speech disorder. Yes blogging will add to my already demanding day but it will serve me as a report card of our life, track progress and goals, but mostly I hope it will be a rewarding experience that potentially could help someone else with a harried and difficult life.
More to come soon...
My goal is to begin blogging again. About my life with RSD and what it means for my family. I also have another topic to post about. Lucas my son has a speech disorder, strongly believed to be Childhood Apraxia of Speech along with a few co existing conditions adding to his speech delay. In one year he has made so much progress, but when you realize that at this time last year he could barely babble or say Mama and Dada you understand that a lot of progress is just the beginning for us. We still have a long road ahead.
Living with RSD and raising a child that has a special need. These are the things that set my family apart from the rest but we still have the normal day to day everyone else has. Clothes need washed, meals need to be made, homework must be done, bills paid, and my husband must go to work each day. Life goes on despite disabilites thrown in your path. Our disabilities just add to the mountain of To Do's. Doctor appointments, therapies, meetings with therapists/teachers, the added bills, diet suppliments, therapy homework, and so much more.
My goal is to reinvent this site. I want to talk about normal Wife/Mother type of things along with RSD life and raising a child with a speech disorder. Yes blogging will add to my already demanding day but it will serve me as a report card of our life, track progress and goals, but mostly I hope it will be a rewarding experience that potentially could help someone else with a harried and difficult life.
More to come soon...
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