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Sunday, June 5, 2011

Changes in having a Disabled Child

I wanted to write another post describing more of the things we deal with day to day with Carter.  He is 32 inches long and 23 lbs 8 oz last time he was measured.  He is usually in the lower percentages for weight (surprisingly) and a little above average in height.  His head is always way off the chart in the negative, because it's so flat in the back.  I found that this is actually normal with kids with 1p36.  Because of the shape of his head, he still has a hard time keeping his head completely controlled.  Research says it should get better when he is 2-3 years old.  I think people notice that with him.  He has been a lot more wobbly lately when sitting up, and tends to fall over a lot.  I'm guessing this is because of his seizures, or perhaps he is trying to transition to lying down.  Who knows?  We have to keep an eye on him more now to make sure he doesn't fall off things.  This means he will never enter Nursery, which is sad because it makes church harder to attend all meetings.

I think probably the most noticeable thing about Carter versus other kids his age, is that he doesn't crawl or walk.  We may be using a stander soon, which is a device that will help him learn to stand.  It is almost like a weapon of cruelty, but it may be necessary.  I've been struggling with his therapy appointments lately, because it's hard to feel motivated when you don't see results.  I LOVE his physical therapist, she comes to our home twice a month.  I love how she points out the good things he is doing, and that she sees great potential for him.  She always gives good advice and goals for the next appointment.  I struggle with his occupational therapy, because it seems like we really don't do anything but play with toys.  Carter has always been particular about his toys, and doesn't play with everything.  He was fixated on a toy that spins for a long time, now he is finally branching out more.

We are probably going to try the ketogenic diet, anyone have advice on that?  He would have to be admitted to the hospital for 2-5 days as they monitor him and teach us about the diet.  He would be watched over by a neurologist, a doctor and a dietitian.  Sounds pretty intense huh?  If it stops his seizures, I think it's worth it to try.  It is low in carbs, normal in protein and high in fat.  Interesting...  Another thing Carter does, because he is behind in speech, he makes lots of LOUD noises.  It is not babbling, but just loudness lol.  A lot of times people stare, but we think it's cute.  He also involves his hands in this, as if he thinks they help him make the noises.  Pretty funny.  We are trying to teach him 'milk' and 'more' in sign language.  We may try speech therapy later on.

Carter now has a handicapped parking permit, which is nice for us!  We already have people asking if they can take him to games and stuff lol.  It does make it easier to park and get him in the store.  What some people may not have thought of, is that Carter doesn't have sufficient balance to stay up in a shopping cart.  So we use his stroller when going shopping in stores.  We get some stares, but overall it makes him more comfortable and our trips easier.  Another thing is that he doesn't do well in highchairs at restaurants.  They don't have enough support and he gets agitated in them.  So...we either take in his stroller, or get a booth and lay him down next to us.  Might sound weird, but it's the only way to eat out.  If he sits up in the booth, he'll bang his head on the table.  We also had a struggle with a forward facing car seat for a while, because he would slump forward a lot.  We got one that reclines, and now he seems more comfortable.  Interesting the changes it affects in our daily lives.

By talking to other moms with disabled children, I have some things I hope to do in the near future.  We want to get Carter a free gym pass at a place with an indoor pool, so I can work on swimming therapy with him.  We have an outdoor pool at our apartment, but it's in the sun and not very warm.  Lots of companies are supposed to give away so much charitable donations a year, and so I plan on writing different gyms to see if we can get free passes.  My other goal is that by getting a gym pass, that we can get in better shape.  I have used the excuse for too long that Carter's disability stresses me out, so I use food to deal with that stress.  It comforts me.  I need to get in better shape so I can better take care of Carter and his needs.  I also want to write the Apple company, and see if we can get a free or discounted Ipad 2.  They have some good apps on there that can help with speech or visual training.  Might as well try and see what resources are out there.  He is already on SSI Disability and Medicaid which has helped us a lot.

10 comments:

  1. Have you considered turning him rear-facing again? It is recommended for all children to sit rear-facing in the car until a minimum of 24 months old, and for even longer if they suffer from low weight or hypotonia. The risk in forward facing is the damage done to a child's spine and neck in an accident. This is especially a concern if the child has poor muscle tone or head control to begin with. Good luck!

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  2. Wow, you are amazing. I'm sure along this journey you will learn so much and also inspire a lot of people who are going through this or similar situations. It's so beautiful the love you have for that little guy! He's so lucky.

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  3. You must be very strong. I admire you very much. I hope things will work out. And I hope Carter will do more things soon. He is sooooo cute. I am sure that he loves and appreciates all this work you have gone though for him. I wish you all the luck in the world. ;)

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  4. Wow, I knew that Carter was a bit delayed, but I had no idea what that entailed. You are such a strong mama. I can't imagine what they would be like, but you make it seem like it's just everyday life; no big thing. He's lucky to have you as a mom.
    I know we don't know each other very well, but I just want you to know that I've thought about you guys from time to time and keep you in our prayers. :)

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  5. Sounds like some good ideas! Don’t count out nursery though! You should talk with your Primary President and/or Bishopric member and come up with a plan for Carter. Just like in the public school, you could ask for a aide for Carter. Someone that would be in the nursery just for Carter and his needs. I would definitely look into it! You certainly deserve some kind of break!!!

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  6. Thanks everyone for the comments. I didn't know kids were supposed to be rear facing for 24 months, I thought only up to a year. He actually does quite well in his carseat now. Erin, thanks for the support.:) Debbie, I am super nervous about who watches Carter because of his seizures. I would rather watch him than put him in crazy Nursery lol.

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  7. Heather, you are a very special woman to have such an amazing child to raise!! Heavenly Father has the deepest confidence in you and your husband to be the best parents for him! I look up to you for the courage you have in getting through this. What a great idea to have this blog! thank you for sharing your thoughts and experiences!

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  8. Heather, my heart and prayers are with you and your husband and you live your life with this very, very, special gift. I don't know if your mom told you but when Carly and I went to lunch with her the other day, I told her I grew up with a "special needs" sister. She couldn't walk or see and was developmentally challenged. But Heather, her spirit was indescribable. As a sibling I knew she was different, but she had something about her that always made me so proud to say she was my sister. As a child I didn't appreciate the hardship it was on my parents because they never showed it- at least to me. She could talk and would talk about her Heavenly Father all the time. I can't remember ever not believing in God because my sister would always talk about Him. These special ones are so close to God. Even if Carter isn't able to say it, you will feel it eminate from him as he gets older. I can't imagine the range of emotions you go through everyday. But the little I've got to know you through facebook, and know what an incredible family you come from, I can see you're incredible strength. Carly tells me how wonderful you, your husband and Carter are. My oldest daughter is getting her Master's right now in Speech Pathology and has lots of ideas. If you ever want to talk about what she knows, let me know. Just wanted you to know who much I admire you and you were picked to be Carter's mother. You're incredible. And Carter is indescribable. How wonderful to be so special words don't do it justice. Loves, Linda

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  9. Thank you everyone, I feel the outpouring of love! I wanted to share this blog to not just get sympathy, but to share our experiences with Carter. And perhaps help someone else who has something hard going on in their life as well. But I have to say, the love has been overwhelming. Thank you all so much!

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  10. Heather I love your blog. The pictures are so cute! I love the one of him siting between you and Chris with a big grin on his face. It is as if he is saying "Hey look at me, I have the best parents in the world and I know they love me!"
    I would 2nd the idea about talking to the primary president about a special teacher that would watch Carter. When I lived in Colorado we had a boy with Autisum in our ward and I had the amazing priviledge of working one on one with him in primary. I loved doing that for not only him but also giving his sweet parents a little break during church. It is important that you have that time to refil your cup each week in church. Even if it is only for less than an hour.
    You two are amazing and Carter couldn't ask for any better parents.

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