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.