Just when we might be moving along smoothly we hit a bump in the road. Stuttering. His stutter happens when he is putting two words together and gets stuck on the first sound of the first word. Word combinations that were loosely understandable have become more confusing. Certain new two word combo's like fruit snack, pronounced more like 'ooh at' have become 'oohoohooh at'.
I talked with our SLP and okay this is to be expected between 3 -5 years of age. My homework is to monitor it and try to judge when and possibly why he is struggling with this "influency". His SLP will also monitor and decide what (if any) is the best aproach to correct this issue. Right now she doesn't want me to work on correcting and the last thing I should do is tell him "slow down". We need to continue making speech enjoyable and if he thinks he is messing up then he may loose interest in attempting speech. Great advice!
As a parent that worried about never hearing her childs voice I find this stutter delightful. Why? Because I get to hear my sons voice even more! It is adorable and amusing. He is not frustrated nor does he even know he is struggling to say a word. He just smiles and works hard to make his point heard. My heart might break a little because even though he doesn't know it yet he has a long hard journey ahead of him. As I whisper into his ear each night after he has fallen asleep "We are a team baby. Mommy is here to help you work hard." We might have a new hurdle to overcome but as a team we will someday get to the point where I could happily complain "Lucas just won't stop talking!"
Tuesday, February 26, 2013
Sunday, February 24, 2013
Fighting For Normal
Fighting RSD.
Okay, I hear you! What do I mean about New Normal? First let me explain that before you can claim your new normal you must first grieve for your old life. Just like the heartache of loosing your favorite Grandmother or someone else impossibly close to you. You must let go of what was. The proper grief process might take a year or more. The grief does not need to be in a specific order nor does it have a set amount of time. Denial, anger, bargaining, depression, and finally acceptance are the five stages of grief. Just like 10 years after you said goodbye to your favorite grandmother and suddenly happen apon an old trinket she gave you, you may quickly visit one or all of these stages of grief. This can happen from time to time during your new normal, and this is normal not a set back. However you still need to grieve because you are saying goodbye to everything you knew to be true about yourself.
Denial - I can still do it all! RSD might be in my leg but I can still wear skin tight jeans and high heels! I think denial is the ugly stepsister who likes to pop up and tease us just to remind us that nope, we cannot do it all like we used to.
Anger - I personally lived in this spot for a long time. I was angry at everyone who could walk easily. I was angry when everyone thought how nice it was to stay home when they had to go to school. I was angry about their boyfriend dramas. I was angry that when my friends came to visit my sister they would barely look at me when they said hi. I was angry for a long time.
Bargaining - It is hard for me to explain this one. Sometimes I would talk to my leg, my RSD, and beg it to let me be able to go out with friends or beg it to let me walk with out crutches. Bargaining with RSD is difficult for me to explain but maybe someone else has a story to share?
Depression - This is a black ugly hole. It is not the same as being sad. Sadness remains grounded when depression is like being lost. When I was depressed I would stare at the tv without watching. My emotions were dried up and I felt numb to the world around me. I had surrenderd my life to RSD.
Acceptance - This is when you have come to terms that RSD is in your life and you just have to deal. This is when you begin your New Normal.
Just because you reached the acceptance phase doesn't mean you are all set to live a wonderful life with RSD. Far from it! You still have to figure out balance, attainable goals, challenges, support, and the will to fight. Each morning you have to decide that you will FIGHT.
Okay, I hear you! What do I mean about New Normal? First let me explain that before you can claim your new normal you must first grieve for your old life. Just like the heartache of loosing your favorite Grandmother or someone else impossibly close to you. You must let go of what was. The proper grief process might take a year or more. The grief does not need to be in a specific order nor does it have a set amount of time. Denial, anger, bargaining, depression, and finally acceptance are the five stages of grief. Just like 10 years after you said goodbye to your favorite grandmother and suddenly happen apon an old trinket she gave you, you may quickly visit one or all of these stages of grief. This can happen from time to time during your new normal, and this is normal not a set back. However you still need to grieve because you are saying goodbye to everything you knew to be true about yourself.
Denial - I can still do it all! RSD might be in my leg but I can still wear skin tight jeans and high heels! I think denial is the ugly stepsister who likes to pop up and tease us just to remind us that nope, we cannot do it all like we used to.
Anger - I personally lived in this spot for a long time. I was angry at everyone who could walk easily. I was angry when everyone thought how nice it was to stay home when they had to go to school. I was angry about their boyfriend dramas. I was angry that when my friends came to visit my sister they would barely look at me when they said hi. I was angry for a long time.
Bargaining - It is hard for me to explain this one. Sometimes I would talk to my leg, my RSD, and beg it to let me be able to go out with friends or beg it to let me walk with out crutches. Bargaining with RSD is difficult for me to explain but maybe someone else has a story to share?
Depression - This is a black ugly hole. It is not the same as being sad. Sadness remains grounded when depression is like being lost. When I was depressed I would stare at the tv without watching. My emotions were dried up and I felt numb to the world around me. I had surrenderd my life to RSD.
Acceptance - This is when you have come to terms that RSD is in your life and you just have to deal. This is when you begin your New Normal.
Just because you reached the acceptance phase doesn't mean you are all set to live a wonderful life with RSD. Far from it! You still have to figure out balance, attainable goals, challenges, support, and the will to fight. Each morning you have to decide that you will FIGHT.
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!
Tuesday, February 19, 2013
Talking Tuesday
It is zero exaggeration to say that we are a talkative family. Leo and I often talk over each other, fighting for the floor. Gabe was an early talker and even talked in his sleep. With a family like ours we find that the process of teaching Lucas to talk means that we have to slow down and listen carefully. We can no longer talk all at once, not if we want to listen and respond to Lucas.
Lucas is learning to put two words together. This language skill is killing his clarity but is amazing to listen to when he does get it right! So often I wish I could have a tape recorder that would switch on automatically at the sound of his voice. His vocabulary seems to finally be growing as he tries to repeat everything his big brother says. I am lucky that I can understand about 50% of what he says. Since I am always around him I act as translater when someone else is hanging out and looks baffled about what he just said. This new verbal growth spurt is a wonderful phase!
I am learning how to find little teachable moments throughout the day. Sometimes it is a simple clarification I look for like when Lucas says "Nana" and uses his sign, I will look at him and while using PROMT with ask him to say "Ba Nana". Sometimes he gets it the first try and others might take him two to three tries. He is always happiest when he knows he said it right! Little Lucas tries so hard! Other teachable moments are when he is asking for something and I ask him to repeat with an additional word he knows. A good example of this is when I he wants something to drink. Lucas may say juice (oose) using the sign. I will ask him "What kind of juice?" and he will respond with apple juice (a ol oose). I will respond "Oh you want apple juice, okay let's get you some apple juice." Lucas will nod his head and repeat apple juice. I love the joy he gets when he see's me pour the apple juice for him, it is a mixture of joy from getting what he wants and being understood.
Gabriel had a long weekend for Presidents Day, 4 days! I kept Lucas home also. Gabe has a friend over today, they are currently playing video games and talking up a storm. Lucas is near by sucking up every word and every move these two make. I am learning that sometimes the best teachable moments are when he just tries to copy his big brother. This does depend on how cooperative Gabe feels at the moment to have his baby brother follow him through the house!
Besides our two word combo skills I am also trying to teach Lucas colors, not just saying them but identifing them. It helps me pay more attention to the world when I am looking at colors and asking Lucas to tell me what it is. This is also expanding his world. A few days ago we took an easy walk around the block. We looked at the snow, tree's, clouds and sky. We saw an ambulance and talked about the cars that drove by. One truck even honked his horn to make Lucas smile. It was a great time and helped with his language skills. Sometimes I would ask him a question and others I would ask him to just repeat what I said. I have noticed that Lucas doesn't always understand me when questions are posed in a certain format. This is a question for his SLP today. One good example is when I ask "Who loves Mommy?" and he will put his hand on his chest and say "ME!" Then I ask "Who does Lucas love?" and he says "ME!" If I ask him about school "Who do you play with at school?" He replies choo choo trains (oo oo ain) If I ask him "Who is your friend at school?" he replies "oo oo ain". I know he knows the names of the kids in his playgroup because when we see them on the way into school he will try to tell me their name. I think it is the question part that he struggles with even though he tries to give an answer. He is getting better at where questions so hopefully with a little more work we can get him to understand the "who" questions.
On the EI side of life we had our meeting last week. It was our annual review and though the Battell showed that we are closing the gap on his delay we are continueing services based on his Speech needs. We really only have about a month left of services. EI is provided under IDEA part C, after he turns 3 years old he will receive surfaces under IDEA part B. If you look towards right you will see a list of links, the IDEA information is there. This is a great government program that too many know too little of. In a nut shell it provides free and appropriate education for children with any type of disability (medical or learning). You do have to jump through some hoops that may test your parenting resolve, because hey, who wants to claim their child needs special education just so the teachers will give them extra help? If you are lucky like I am then you will have someone great and kind help you get through the system.
Lucas is learning to put two words together. This language skill is killing his clarity but is amazing to listen to when he does get it right! So often I wish I could have a tape recorder that would switch on automatically at the sound of his voice. His vocabulary seems to finally be growing as he tries to repeat everything his big brother says. I am lucky that I can understand about 50% of what he says. Since I am always around him I act as translater when someone else is hanging out and looks baffled about what he just said. This new verbal growth spurt is a wonderful phase!
I am learning how to find little teachable moments throughout the day. Sometimes it is a simple clarification I look for like when Lucas says "Nana" and uses his sign, I will look at him and while using PROMT with ask him to say "Ba Nana". Sometimes he gets it the first try and others might take him two to three tries. He is always happiest when he knows he said it right! Little Lucas tries so hard! Other teachable moments are when he is asking for something and I ask him to repeat with an additional word he knows. A good example of this is when I he wants something to drink. Lucas may say juice (oose) using the sign. I will ask him "What kind of juice?" and he will respond with apple juice (a ol oose). I will respond "Oh you want apple juice, okay let's get you some apple juice." Lucas will nod his head and repeat apple juice. I love the joy he gets when he see's me pour the apple juice for him, it is a mixture of joy from getting what he wants and being understood.
Gabriel had a long weekend for Presidents Day, 4 days! I kept Lucas home also. Gabe has a friend over today, they are currently playing video games and talking up a storm. Lucas is near by sucking up every word and every move these two make. I am learning that sometimes the best teachable moments are when he just tries to copy his big brother. This does depend on how cooperative Gabe feels at the moment to have his baby brother follow him through the house!
Besides our two word combo skills I am also trying to teach Lucas colors, not just saying them but identifing them. It helps me pay more attention to the world when I am looking at colors and asking Lucas to tell me what it is. This is also expanding his world. A few days ago we took an easy walk around the block. We looked at the snow, tree's, clouds and sky. We saw an ambulance and talked about the cars that drove by. One truck even honked his horn to make Lucas smile. It was a great time and helped with his language skills. Sometimes I would ask him a question and others I would ask him to just repeat what I said. I have noticed that Lucas doesn't always understand me when questions are posed in a certain format. This is a question for his SLP today. One good example is when I ask "Who loves Mommy?" and he will put his hand on his chest and say "ME!" Then I ask "Who does Lucas love?" and he says "ME!" If I ask him about school "Who do you play with at school?" He replies choo choo trains (oo oo ain) If I ask him "Who is your friend at school?" he replies "oo oo ain". I know he knows the names of the kids in his playgroup because when we see them on the way into school he will try to tell me their name. I think it is the question part that he struggles with even though he tries to give an answer. He is getting better at where questions so hopefully with a little more work we can get him to understand the "who" questions.
On the EI side of life we had our meeting last week. It was our annual review and though the Battell showed that we are closing the gap on his delay we are continueing services based on his Speech needs. We really only have about a month left of services. EI is provided under IDEA part C, after he turns 3 years old he will receive surfaces under IDEA part B. If you look towards right you will see a list of links, the IDEA information is there. This is a great government program that too many know too little of. In a nut shell it provides free and appropriate education for children with any type of disability (medical or learning). You do have to jump through some hoops that may test your parenting resolve, because hey, who wants to claim their child needs special education just so the teachers will give them extra help? If you are lucky like I am then you will have someone great and kind help you get through the system.
Sunday, February 17, 2013
Change of plans
From my window view Winter looks beautiful. The snow on the ground looks soft and clean. The tree limbs hang like icy arms. I watch children run around in their snow suits dragging a sled behind them. From my window view Winter looks beautiful.
This is where that cliched saying comes into play "Looks can be decieving". The Winter season is very hard on my RSD. My RSD is very cold sensitive. One gusty cold wind could throw me into a full flair making it impossible to walk or even move my right leg. When I feel this cold wind hit my leg it feels like a blunt force impact, like a frozen metal bat has slammed into my leg. With that mental image you can understand what I mean when I say impossible to walk or move my leg.
Today, Sunday February 17th 2013, I had plans on going to church. Today is the first Sunday in the Lent season and as my Lenten obligation I had promised on attending church every week, among other promises I made for the season. This morning Leo walks in the door, coming home from work, and tells me that he won't be taking me to church today. "It is freezing outside and I don't want you to hurt your leg." I tried talking to him and explaining how important going to church today is for me. He understood but explained how bitter the cold wind is and how he doesn't want me hurting. "I will take you to church during the week. But please understand that you cannot go outside today. It is simply too cold." At this point my religious obligations had to take a back seat to my health. Leo was making complete sense and he was delivering this news knowing how I would feel. His priority is to take care of me and he really didn't want me to be hurting later.
Winter is a hard season for RSD. You have to be mature enough to make the decisions based on your health and not your wants. Family and Friends will need to be understanding and supportive of the days you choose to not leave your house. You can still be fun and find other things to do. Sit around the table and chat or play board games. Play multi-player video games. Curl up on the couch and watch movies. Hold a dinner party and have your friends bring the wine! Snuggle up in front of a fire and read a good book. Just because you are closed in doesn't mean life is boring! It just means that others must come to you and you need to stretch your imagination to rethink your possibilities!
I am not able to attend church today but I still feel blessed. I have a wonderful husband who loves me and takes care of me. He truly wants the best for me and knows what I need. He worries about me and my health. He is a true blessing in my life.
This is where that cliched saying comes into play "Looks can be decieving". The Winter season is very hard on my RSD. My RSD is very cold sensitive. One gusty cold wind could throw me into a full flair making it impossible to walk or even move my right leg. When I feel this cold wind hit my leg it feels like a blunt force impact, like a frozen metal bat has slammed into my leg. With that mental image you can understand what I mean when I say impossible to walk or move my leg.
Today, Sunday February 17th 2013, I had plans on going to church. Today is the first Sunday in the Lent season and as my Lenten obligation I had promised on attending church every week, among other promises I made for the season. This morning Leo walks in the door, coming home from work, and tells me that he won't be taking me to church today. "It is freezing outside and I don't want you to hurt your leg." I tried talking to him and explaining how important going to church today is for me. He understood but explained how bitter the cold wind is and how he doesn't want me hurting. "I will take you to church during the week. But please understand that you cannot go outside today. It is simply too cold." At this point my religious obligations had to take a back seat to my health. Leo was making complete sense and he was delivering this news knowing how I would feel. His priority is to take care of me and he really didn't want me to be hurting later.
Winter is a hard season for RSD. You have to be mature enough to make the decisions based on your health and not your wants. Family and Friends will need to be understanding and supportive of the days you choose to not leave your house. You can still be fun and find other things to do. Sit around the table and chat or play board games. Play multi-player video games. Curl up on the couch and watch movies. Hold a dinner party and have your friends bring the wine! Snuggle up in front of a fire and read a good book. Just because you are closed in doesn't mean life is boring! It just means that others must come to you and you need to stretch your imagination to rethink your possibilities!
I am not able to attend church today but I still feel blessed. I have a wonderful husband who loves me and takes care of me. He truly wants the best for me and knows what I need. He worries about me and my health. He is a true blessing in my life.
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.
Thursday, February 14, 2013
Valentines Day
A lucky woman like me loves to celebrate Valentine's Day. Yes it is a cheesy hallmark holiday but when you get down to it the day is about putting a little extra effort into showing that special someone in your life how important they are to you. I am a simple woman, it doesn't take much to put a smile on my face.
Celebrating V-day gets harder when you have a busy family life. Leo still must work, the boys have school, Lucas has therapy, Gabe has homework and Tae Kwon Do. This is not a holiday when everything closes down for the day. If you care about this special day (like I do) then you are faced with being creative. How do you find the time to let those you love and are special to you FEEL special and loved?
The kids are easy...extra hugs and kisses and proclamations of love. Of course Lucas is too young to understand any of this but he still had fun handing out Valentines to his friends at playschool and enjoyed their little party. Gabe was so sweet this morning. I woke him up by climbing in his bed to cuddle him, 5 minutes of a snuggle makes him feel so good and me too! During our snuggle he turns his head and says "Happy Valentines Day Mommy!" I kissed him all over. He gave me my first Happy Valentines Day kiss today!
With Leo my best valentine's gift is that he simply remembered! LOL He is not big on the day and only puts the effort out to make me happy. He is a great husband! Last night he asked me if I would go to breakfast with him after the kids left for school "Awe you remembered! Of course I will go with you! You remembered!" Leo works early in the morning so when he walked in the door this morning he was holding a bouqet of flowers for me. After getting myself fixed up we went out to one of our old diner spots from back when we were dating, it was a very nice trip down memory lane. Also very nice was being out together and not talking about the kids or home, we just enjoyed each other and laughed. After breakfast however we both needed to get back to our schedules. Leo back to work and me back to Lucas' and home. We aren't going out to dinner tonight but we are considering pizza!
I am a lucky woman. I found the man of my dreams, talk dark and handsome. He has filled my life with love laughter and joy. I have two wonderful boys who are crazy about their mommy and drive me crazy at the same time. A lucky woman like me who is filled with so much love in her life feels compelled to celebrate Valentine's Day, even if it is just a hallmark holiday!
Celebrating V-day gets harder when you have a busy family life. Leo still must work, the boys have school, Lucas has therapy, Gabe has homework and Tae Kwon Do. This is not a holiday when everything closes down for the day. If you care about this special day (like I do) then you are faced with being creative. How do you find the time to let those you love and are special to you FEEL special and loved?
The kids are easy...extra hugs and kisses and proclamations of love. Of course Lucas is too young to understand any of this but he still had fun handing out Valentines to his friends at playschool and enjoyed their little party. Gabe was so sweet this morning. I woke him up by climbing in his bed to cuddle him, 5 minutes of a snuggle makes him feel so good and me too! During our snuggle he turns his head and says "Happy Valentines Day Mommy!" I kissed him all over. He gave me my first Happy Valentines Day kiss today!
With Leo my best valentine's gift is that he simply remembered! LOL He is not big on the day and only puts the effort out to make me happy. He is a great husband! Last night he asked me if I would go to breakfast with him after the kids left for school "Awe you remembered! Of course I will go with you! You remembered!" Leo works early in the morning so when he walked in the door this morning he was holding a bouqet of flowers for me. After getting myself fixed up we went out to one of our old diner spots from back when we were dating, it was a very nice trip down memory lane. Also very nice was being out together and not talking about the kids or home, we just enjoyed each other and laughed. After breakfast however we both needed to get back to our schedules. Leo back to work and me back to Lucas' and home. We aren't going out to dinner tonight but we are considering pizza!
I am a lucky woman. I found the man of my dreams, talk dark and handsome. He has filled my life with love laughter and joy. I have two wonderful boys who are crazy about their mommy and drive me crazy at the same time. A lucky woman like me who is filled with so much love in her life feels compelled to celebrate Valentine's Day, even if it is just a hallmark holiday!
Tuesday, February 12, 2013
Talking Tuesday
Two word combo's:
Working on Lucas' language skills is not about teaching him a new word or working on a singular letter sound like p. Language skills are about combining words together and form a sentence so that you can have a conversation. My homework lately has been to work on making Lucas combine two words. He has a repretore of two word phrases; "Light on" "TV on" Help me" "Big bowl" "Apple Juice." Basically anything you can add to "ON" "IN" "BIG" and "ME".
Before embarking on this two word combination aspect of language our SLP warned that it will compromise his clarity. Oh boy was she right! There are times I feel torn because "Yay he is talking more" and yet I struggle to understand what he is saying. Sometimes I will have him repeat himself three of four times before the light bulb goes off. Yet there are those times that I will just nodd my head and say "okay" because I have zero clue what he was trying to say. In those moments I swear Lucas realizes that I didn't understand him and either he just walks away defeated or he becomes stubborn and continues to try to get his point across but breaks down into tears of frusteration. It is a confusing emotion for me because I realize we have so far to go but at that same time my heart bursts with joy that he is talking!
I say "Lucas say ... "
This morning:
This morning we had an unexpected and fun teaching moment. Out in front of the house was a school bus! This is very exciting! I found Lucas glued to the windows watching the scene, his second bowl of oatmeal sitting on the floor next to him. "Aye!" Lucas is shouting with glee. I say "Lucas say Bus" Lucas says "Us" I say "Lucas say School Bus" Lucas says "ool us" I say "Lucas say Big Bus" Lucas says "Bee Us" I say "Lucas is this fun?" Lucas says "Aye!" We continue to watch the bus while it waits for the recycling truck to move. I am adoring Lucas and how he marvels over this bus. His excitement is contagious and addicting. I don't want this moment to end so I pray the bus doesn't move yet but at the same time I keep scanning the area thinking of more things I can get him to say. Then the truck moves and the bus inches away from us. I look down at Lucas with the smile still on his face. Lucas say "Bye Bus" and Lucas says "bye bus". As he walks away from the window I now see the oatmeal smeared on the window. Mental note, I need to clean that but dang the mess is worth it!
After his playgroup:
"Mommy! Home!" Lucas sweetly calls out to me. He is in a great mood and the first thing he wants to do is eat. I say okay and we go into the kitchen but here is our problem. He wants oatmeal. I have been trying to teach him that certain things are eaten at certain times. He is a great eater so I don't have to indulge his food requests just to get nutrition into him, this morning he had two servings of oatmeal. We had a little confrontation and tantrum over the oatmeal subject but finally I won and he had a sandwich for lunch, with the promise of "First sandwich then popcorn. But you must eat your sandwich." I don't think he even chewed because a few moments later he is handing me his empty plate and walking to the cabinet for the popcorn.
We use a hot air popper. This little machine is one of my favorite tools to get Lucas talking. Standing on a chair he can actually watch the kernals POP. When they do we say "POP" and as they pop faster we say "POP" faster. I know popcorn is one word but I use it as a two word combination for Lucas. When he says Popcorn he looses the consanants and it comes out more like "ah on". When you ask him to say pop he can say the first P, when I work with him eye to eye and have him put his finger under his bottom lip he then can say both p's in pop. His fun two word phrase that gets included with our popcorn routine is "Big Bowl". In December I spent time working on this concept of big and little. Lucas thought using a Big Bowl for Little Popcorn was hilarious. Even since then the term BIG has been a fun one to toss around and is great for doing two word combo's.
Speech Therapy:
Today Lucas was excited to show off his Hide Out. Okay, yes hide is a hard word for him and I tried getting him to say Tent but he loves to hide and would not accept tent. When his SLP walked through the door he excitedly ran over and said "Hi ou", his therapist didn't understand so I translated for him. In therapy they worked on cvc - top and cvcv - tunnel. He gave her some two word combo's; that way, baby up, light on, more on, and baby sleep.
I did steal some of her time to ask questions about the meetings we have coming up regarding getting him into the school district and some board cards she is doing for his daycare.
Evening time.
I have to admit. I was worn out. I couldn't focus enough to continue working on his language skills. He is a ball of energy, always turned on. My own issues leave me a little drained. Also I did not put him down for a nap today, his SLP was coming early so there wasn't any time. I know I naturally worked on langauge skills with Lucas, it is a force of habit now. However I didn't have the energy left to consciencely work with him. Still, I think today was a good Talking Day!
Plan for tomorrow what doesn't get done today.
Tomorrow Lucas has Developmental Intervention Therapy (DI). I called today and need to followup tomorrow regarding his evaluations with the school district. I also have an unholy mess in my kitchen that I must do before going to Ash Wednesday Mass. Gabe informed me this morning that he needs his laundry done, he is out of jeans. I am sure after I go to bed I will remember at least half a dozen of other things that need to be done, like Valentine's Day Cards!
Working on Lucas' language skills is not about teaching him a new word or working on a singular letter sound like p. Language skills are about combining words together and form a sentence so that you can have a conversation. My homework lately has been to work on making Lucas combine two words. He has a repretore of two word phrases; "Light on" "TV on" Help me" "Big bowl" "Apple Juice." Basically anything you can add to "ON" "IN" "BIG" and "ME".
Before embarking on this two word combination aspect of language our SLP warned that it will compromise his clarity. Oh boy was she right! There are times I feel torn because "Yay he is talking more" and yet I struggle to understand what he is saying. Sometimes I will have him repeat himself three of four times before the light bulb goes off. Yet there are those times that I will just nodd my head and say "okay" because I have zero clue what he was trying to say. In those moments I swear Lucas realizes that I didn't understand him and either he just walks away defeated or he becomes stubborn and continues to try to get his point across but breaks down into tears of frusteration. It is a confusing emotion for me because I realize we have so far to go but at that same time my heart bursts with joy that he is talking!
I say "Lucas say ... "
This morning:
This morning we had an unexpected and fun teaching moment. Out in front of the house was a school bus! This is very exciting! I found Lucas glued to the windows watching the scene, his second bowl of oatmeal sitting on the floor next to him. "Aye!" Lucas is shouting with glee. I say "Lucas say Bus" Lucas says "Us" I say "Lucas say School Bus" Lucas says "ool us" I say "Lucas say Big Bus" Lucas says "Bee Us" I say "Lucas is this fun?" Lucas says "Aye!" We continue to watch the bus while it waits for the recycling truck to move. I am adoring Lucas and how he marvels over this bus. His excitement is contagious and addicting. I don't want this moment to end so I pray the bus doesn't move yet but at the same time I keep scanning the area thinking of more things I can get him to say. Then the truck moves and the bus inches away from us. I look down at Lucas with the smile still on his face. Lucas say "Bye Bus" and Lucas says "bye bus". As he walks away from the window I now see the oatmeal smeared on the window. Mental note, I need to clean that but dang the mess is worth it!
After his playgroup:
"Mommy! Home!" Lucas sweetly calls out to me. He is in a great mood and the first thing he wants to do is eat. I say okay and we go into the kitchen but here is our problem. He wants oatmeal. I have been trying to teach him that certain things are eaten at certain times. He is a great eater so I don't have to indulge his food requests just to get nutrition into him, this morning he had two servings of oatmeal. We had a little confrontation and tantrum over the oatmeal subject but finally I won and he had a sandwich for lunch, with the promise of "First sandwich then popcorn. But you must eat your sandwich." I don't think he even chewed because a few moments later he is handing me his empty plate and walking to the cabinet for the popcorn.
We use a hot air popper. This little machine is one of my favorite tools to get Lucas talking. Standing on a chair he can actually watch the kernals POP. When they do we say "POP" and as they pop faster we say "POP" faster. I know popcorn is one word but I use it as a two word combination for Lucas. When he says Popcorn he looses the consanants and it comes out more like "ah on". When you ask him to say pop he can say the first P, when I work with him eye to eye and have him put his finger under his bottom lip he then can say both p's in pop. His fun two word phrase that gets included with our popcorn routine is "Big Bowl". In December I spent time working on this concept of big and little. Lucas thought using a Big Bowl for Little Popcorn was hilarious. Even since then the term BIG has been a fun one to toss around and is great for doing two word combo's.
Speech Therapy:
Today Lucas was excited to show off his Hide Out. Okay, yes hide is a hard word for him and I tried getting him to say Tent but he loves to hide and would not accept tent. When his SLP walked through the door he excitedly ran over and said "Hi ou", his therapist didn't understand so I translated for him. In therapy they worked on cvc - top and cvcv - tunnel. He gave her some two word combo's; that way, baby up, light on, more on, and baby sleep.
I did steal some of her time to ask questions about the meetings we have coming up regarding getting him into the school district and some board cards she is doing for his daycare.
Evening time.
I have to admit. I was worn out. I couldn't focus enough to continue working on his language skills. He is a ball of energy, always turned on. My own issues leave me a little drained. Also I did not put him down for a nap today, his SLP was coming early so there wasn't any time. I know I naturally worked on langauge skills with Lucas, it is a force of habit now. However I didn't have the energy left to consciencely work with him. Still, I think today was a good Talking Day!
Plan for tomorrow what doesn't get done today.
Tomorrow Lucas has Developmental Intervention Therapy (DI). I called today and need to followup tomorrow regarding his evaluations with the school district. I also have an unholy mess in my kitchen that I must do before going to Ash Wednesday Mass. Gabe informed me this morning that he needs his laundry done, he is out of jeans. I am sure after I go to bed I will remember at least half a dozen of other things that need to be done, like Valentine's Day Cards!
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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