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Saturday, October 13, 2018

Oh these boys and their speech!

What to do with these boys. Andrew has had some issues with his speech since preschool. He was boarder line at age 4 and they did not feel he needed therapy at that time. His teachers said they often couldn't understand him so they brought a team in to evaluate him. They said he could just outgrow his speech issues because the sounds he had issues with were normal for many at his age. They informed his school and asked for an eval to be done at age 6.

Fast forward and here we are. Andrew is 6 and in the 1st grade. he had an eval in Kindergarten but they wanted to have one again at age 6. This year he failed his evaluation. I don't seem to notice his speech issues. We understand him and he self teaches if he pronounces words wrong. He even taught himself to stop saying stoon but rather spoon. He practiced in his bed one night and ran upstairs the next morning to tell me he can now say spoon correctly! This was months ago and I feel his speech has improved so much from his own doing. I think as kids we all had issues with certain words. We grow up thinking that is the way they are pronounced but in fact they are not.

So Monday I head to his school in the afternoon to attend my first meeting to approve therapy for any other children besides Brendan. It is a bit odd. I never thought any of them would need services. I have noticed Lily speaks just like her brother so I wonder if she will need it to. I guess time will tell. We plan on sending her to preschool next year. She is beyond shy and if we dare mention school she tells us that she is not going to school and will cry.

I am guessing more meetings are in my future. At least I am used to this whole process. I am glad he will get the help that he needs. He is very smart and blew me away the other night with his homework. They send home packets for us to complete and he knew absolutely everything. He knows all of his letters and the sounds that they make. It seems too easy for him. So although he has speech issues he still understands all of the sounds which is awesome. In Kindergarten he was struggling with writing because the sounds that he pronounced were wrong and he couldn't figure out how to write words out. If getting him help in speech creates less stress for him and writing to be easier then I am all for it. I think he has progressed since last year and he would probably progress on his own but I don't want him to feel inadequate or frustrated with school. It is very important for him to do well and enjoy learning.

He is an amazing kid with a heart of gold. He is sensitive and loving and a great brother. I want the best for him.

Monday, October 8, 2018

He never complains

I think I have shed many more tears than my son. I think I dwell on what he isn't able to do way more than him. I think I freak out about the future more than he ever will. I think I am the one constantly feeling guilty that he sits in his wheelchair too long, hasn't been stretched for the day or needs to take a bike ride. Brendan is perfectly content sitting in his wheelchair.

Some days I wish he had more drive. I wish he had some motivation. I wish he would ask me to get up and walk, take a bike ride, go in his stander or to go on the vibration plate. It is all me all of the time. I always have to ask or tell him that it is time to get out of his chair. MOST of the time he doesn't fight me. He enjoys working out and loves going on bike rides. Some days he isn't in the mood or doesn't want to get off of his computer but he is 15 so I totally get that!

The other night as I was thinking of 1000 irrelevant things instead of going to sleep I realized something. I realized it is probably for the better that he is content. He would be very frustrated otherwise. He doesn't mind that everyone has to help him. He doesn't mind sitting and watching Youtube for hours. He doesn't mind wheeling around instead of walking. Emotionally and mentally I shouldn't want any different for him. He has a long life ahead of him and he will most likely be in a wheelchair his entire life. I personally think if he really wanted to walk in canes or stand up he could but he thinks he can't. He has fears and he just doesn't try. As a mother I have be the drive. I have to demand that he gets off his butt and moves those legs. I have to do the work so that he gets exercise and stretched out. If I don't carve out the time I feel beyond guilty. I sleep better if he has a productive day.

This year he has actually shown some motivation. He always wants sneakers on so that he can use the bathroom on his own. He has come so far and figured it all out completely on his own. The only thing that stinks is that the wrong breaks were installed on his wheelchair when one broke this Summer and I am STILL waiting on the correct parts to come in. This really hinders him because his foot plates can not open all the way and he has a lot of trouble self transferring. I guess I should have offered to pay out of pocket for that item! It is a major safety issue but I guess that doesn't matter. (Can you sense my annoyance?) He has also gotten so much better riding his bike. He used to always want to be pushed or helped up the huge hills. But now he rides a full mile with zero assistance, even up the hills. I have probably mentioned this before but I am super excited. He actually just wheeled out of his bedroom as I was typing trying to get his own shirt off. It was only behind his head while both arms were still in but that is a start! He never dresses or undresses himself. Maybe one day he can help us out. He also did amazing at the dentist last month. He has major sensory issues and he tends to gag. He decided not to eat breakfast so that he wouldn't have any issues and he did it! He even handled a full x ray and had to stay completely still while biting onto something. I was shocked. Maybe he is more motivated than I think?!

Sometimes we battle. We yell. We cry. But no matter what we love each other and I always assure him that everything I do, I am doing for him and to make his life better. One day he will appreciate all that I have done for him. If not I know that I did everything I could for my son with Cerebral Palsy. I am just happy that Brendan is happy. He never pity's himself and he never complains. He is such an awesome kid.

Friday, October 5, 2018

Insurance, Mobility Companies and my Sanity!

Why must our country have ridiculous insurance hoops that we must jump through? Why must it take months to receive an item approved by insurance? Why do people suddenly help you when you offer to pay out of pocket?

Brendan's wheelchair had a serious issue this past week. He came off the bus with a completely broken foot plate. Not only am I still extremely annoyed that I never received a phone call, text or email regarding his broken foot plate but I also couldn't get through to the mobility company. I never even got the full story about how it broke off even after asking multiple people. The only explanation I ever received was that "it just fell off". I don't think that is possible but since no one will tell me what happened in PE that day I guess I will never know.

So my son gets off the bus with his foot dangling and my husband immediately went into Macgyver mode. I called National Seating and Mobility immediately in order to get a replacement and of course there was no answer. The temporary fix didn't last long. Tape and metal don't mix well. Later that night my husband then grabbed an old foot plate from a stroller we do not use and strapped it on with duct tape. We thought it would hold for a while but he came home after one day in school with it hanging down. The tape couldn't hold up with the pressure of his foot.

Let me tell you how frustrating it is when you call a mobility place and never get through. I called 4 times and let it ring a million times. I even tried different extensions. I finally left a voicemail and of course never received a call back. I called the next day and finally someone answered. They wanted me to bring him in to look at it so they could order the part. They said there was no way a tech could come to us. I asked if they had the parts in stock and was told no "so you want me to drive my son there (40 minutes one way) so they can look at his chair and order a part"? I was less than thrilled. We ordered his wheelchair from this company. They have repaired it, ordered parts for it and should know every detail of his chair. Why couldn't someone just look in the computer and figure out what part to order?
Sensing my tone she changed her tune and told me I can send pictures to see if *Seth could see what part he needs to order. So moments later I send off 3 pictures. I was told they would get back to me in the morning.

Fast forward to the next day. I hate seeing my son not sitting properly in his wheelchair but I had to send him off to school anyway. I receive a text message from NSM stating they can order the part based on these pictures but have to go through insurance. I am instantly annoyed. Do you know how long it takes for insurance to approve something and then for you to actually receive it? Way too long on a very important piece of a wheelchair. She said it will go quicker since they don't need doctors approval. I think a day is too long never mind the 3 days it has already been. I asked if she could tell me the exact model of his wheelchair so we could just order the part ourselves. She told me if we go through another vendor they can no longer service his chair! Seriously?! The ONLY important thing right now is to get a part for my son's wheelchair. I text back asking if I could pay out of pocket so they could order the part so we could fix my son's wheelchair ASAP. I am not sure they understood that I wanted this fixed yesterday. She text that they could get me a price quote the next day. So we wait another day.

The next morning I receive a text and now all of the sudden they have the part in stock and I do not have to pay out of pocket or go through insurance. Seriously? It took days to get to this point. I am happy they have the part. This avoids a long waiting period but with that text said "if you can come today between now and 2 pm", UM Okay that is not possible. It is almost 10 am. My son is in school and I am at work. Just picking him up is a process. So at first I am offended because basically it reads that you can have the part for free if you come today. Fortunately they could also fit us in tomorrow at the most inconvenient time, 11 AM. So my kid got to skip school and he was happy as can be. We made our 40 minute commute one way for a 5 minute fix. It is definitely not the correct part but hey his foot plate is attached again and all is well.

It made me stop and think about how stuck we are using insurance. This was his first major issue. We are still waiting on multiple replacements on his wheelchair and I am used to that. I just deal with it. I do get annoyed especially when I was told today that they have no idea when the parts will be in and it has already been months. But this was an emergency and yet no one cared. No one said hey let's make this happen, what can we do to fix his wheelchair. They made this repair sound like it was nearly impossible to pull off in weeks never mind a few days. I still think it should have been repaired much faster. I can't even wrap my head around this idiotic process. I just wanted it fixed as soon as humanly possible and I guess that did happen but only because of me. What if it was a part that cost $1000's and I couldn't just offer to pay out of pocket. What happens to people with power wheelchairs that break and can't be fixed for months? What do they do without their chair working properly? Brendan doesn't have a back up. Even if we took the one from his dads' house he wouldn't be able to be transported to and from school which would make life very difficult. I just think there should be a better way. How long would it have taken if I didn't even think to pay for it instead of waiting for insurance. What if I thought there was no other option? What if I didn't speak up and just did everything they asked me to do, wasting two days to get one simple little part? Blows my mind the world we live in right now. The first thing *Seth said to me was "oh as soon as I heard you wanted to pay out of pocket I had to do something".
Thank you, I think?

I am really appreciative that they did fix it and that I am able to skip work for a few hours on a last minute notice. Not everyone can do that. Not everyone can say sure, I can come at 11 am tomorrow. If we couldn't have made that time we would be waiting until Tuesday! Just mail me the part and I will fix it myself! Something needs to change.