Living this difficult life

Trying to find shoes that fit over Brendan's new leg braces made me think a lot lately about my son being disabled. By now this life has become the norm but sometimes certain things make you realize how difficult his life is for him and everyone involved in his life. Living in a wheelchair makes everything more complicated. Doing simple daily things take so much longer and requires so much more effort for not only him but whomever is helping him at that time.

For instance, I can get off the couch and go grab a snack in 30 seconds. Brendan can be in his wheelchair in his room and take nearly 10 minutes to get his own snack. He often has to ask for assistance especially if making nachos. We have recently reorganized a drawer and built a snack cabinet to make life easier. He still tries to ask anyone and everyone to get one for him. I can totally understand why because it takes everyone else 30 seconds. We are trying to stop doing everything for him because he really needs to work on independence. He will often choose to skip the snack if someone doesn't help him and this may just be laziness or maybe it requires too much effort. I don't know because I have it easy, I can walk and use my hands appropriately.

Now lets talk about buying a new pair of sneakers. An average person may take a trip to the mall or stop at a few stores to find a new pair of sneakers. They get to try on a bunch right off the shelf and get to choose their favorite color and style. Brendan has to get what ever I can find that fit over his braces. I miss his SMO's (ankle braces) because we could pick almost any sneaker he wanted.
I am kicking myself for not sticking with the SMO's and letting the doctors (here) dictate what he wears. I honestly believe it has not done him any good. I like to think they know what they are doing and I always want to try and help him walk better so I listen to them. I also take his orthotist's opinion into consideration when I bring her the script. This time GRAFO's were decided upon. I was told it would help his crouched walking which I am always trying to correct. I google image searched that style of brace and thought they didn't look too cumbersome and may work well for him. I was wrong! I thought they would look like these:

NOPE! He received these:

I am so fed up with braces that are made 3 sizes larger than his actual feet. I am so sick of the way they are designed that make them nearly impossible to fit into actual sneakers. This time we had to buy 3.5 sizes bigger than his actual sizes in an X Wide. We had to take out the sole and lace them very loosely. We found 1 pair that sort of fits. I don't love them. He won't love them but they should function. I completely failed at one store and had to try a different one. Men's size 7 1/2 is a hard find never mind adding wide width to that size. But at least we found a pair and he can now try out the braces to see if my opinion will change based on his walking. I do not have high hopes.

Compared to his regular sneakers

This also reminds me that the average person can get themselves dressed in just a few minutes. Brendan has an alarm set for 10 minutes earlier than us so he can remove his own covers and sit up in bed. This has been a new goal recently and he is doing amazing! He can't undress or dress himself at all so every single morning my amazing husbands takes this chore on. I have my own routine that I do so don't think I am still sleeping! Remember we have 5 kids, 4 of which head off to school. Getting him dressed, on the toilet and teeth brushed takes a solid 15 minutes and depending on the day it can take longer. If Brendan wakes up tired it takes an extra 10 minutes to get all of that done. Adding the leg braces into the routine can easily add another 5-10 minutes. I will have to time this process! You have to dig out the correct socks and actually get the brace on and then get the dreaded sneakers over them. You can literally break a sweat getting him ready for the day.

We recently had to get Brendan a folding wheelchair so that other people could take him out and about. He has a PASS worker that takes him out into the community and he is also interning at the Police station. Oddly both of them have the exact same very small car, a Toyota Corolla. His job coach drives him to and from the Police Station weekly and his PASS worker takes him to subway. A folding wheelchair has made this possible but you can't just easily fold it up and place it into the trunk. It is a process. First you have to unvelcro the seat cushion. Then you need to unclip the back seat and pop it off. Then you have to pop of the wheels (because it still wouldn't fit with the wheels on), fold down the handlebars, lift up the foot plate that doesn't EVER stay up and always gets in the way when you are trying to fold it and then pull up on the seat to fold it in half. Did you get all that? Yup it is a pain in the butt and that is on a nice sunny day. Never mind doing all of that in the rain or bitter cold. You get soaked. You can't hold an umbrella. You already spent a few minutes shifting Brendan out of the wheelchair and into the seat of the car and now you have to dismantle this chair just to transport it 12 minutes down the road to do it all over again. Crazy right?

I always make comments to my husband about not seeing many people in wheelchairs. I know there are many types of disabilities and most of them don't require a wheelchair but you hardly see them. I think I now know why I don't see them out and about. It is too much work! We actually love when Bren chooses to stay home if we give him the option. It is sad but true. Sometimes I have to run out quick and he exclaims "I want to go" and I have to say "sorry not this time" because it would take longer for me to get him into and out of the car than the entire trip would take. That is reality.

I am not really sure where I am going with this post. I have been thinking about all of these things lately and I want everyone to really appreciate their working bodies. Life is so difficult otherwise. I still fear the future because if his own mother doesn't always want to put in the effort to take him out and about, then who will? I often get sad thinking of him staying home all of the time, watching YouTube and eating take out. It makes me cry. I will have to focus on making everything perfect so that people can take him out and about easily and say Yes to him instead of No. Fortunately we have been creating the perfect house for him which makes life a lot easier for him and for us.

State ID and Golf Cart

A few years ago I made the decision that I would take Brendan to get his state ID at 16 since he isn't able to get a permit or license. We plan on helping the kids get a used car so they can work when they are older. Brendan will never have this opportunity so we thought of the next best thing.

Brendan has mobility issues along with a significant vision impairment due to his brain damage at birth. Unfortunately this means he can not get a license. We are all coming to terms with the fact he will never drive. Brendan has always wanted to drive and has been obsessed with cars since he was a toddler. It is upsetting for all of us but we are trying to make the best of it. Along with his disabilities also comes a huge lack of concentration. He has zero ability to focus, react and process information. These all make for very unsafe driving.

We decided to make his 16th birthday the best it could be. Some kids get a new car. Our kid got a golf cart. We were a bit worried he would be upset because he has literally wanted a surprise car for his 16th birthday since he was 8 years old. Fortunately he loved it and calls it his car.

Brendan had to miss school for multiple appointments one day so I decided to take him to get his state ID. This way he can carry a card with him that looks just like a license. It was a huge hit and he put it right into his wallet. We had a great day together and I am so glad we had this experience. While I saw other teenagers in line for their drivers test while we were there I didn't let it get me down. Brendan and I were there to get his ID and this was an exciting milestone. He really enjoyed the entire process. He got a temporary ID and waited impatiently for the actual ID to arrive in the mail. Fortunately it didn't take months like they said it potentially could. He did a great job taking the picture. We practiced beforehand and then he was told he couldn't show teeth so I am super impressed with how the picture turned out. He had to sit in his walker because he was too short in the chair.





We came up with the golf cart idea while camping in NY last Summer. Everything worked out and we had a golf cart delivered to the house months before his birthday. We wrapped it in tarps and 'hid' it behind the swing set and somehow not 1 child noticed it. Not sure how since this thing is not tiny. We pulled it off and had an epic surprise on his birthday. He chose the key as the very last present unbeknown to him. He was thrown off and had no idea. It was waiting for him in the driveway and he was so overwhelmed when he saw it. He is still on cloud 9 months later.








Over the years I have learned to appreciate the little things and not get upset at what he can not do. He is capable of so much and he is happy with what he can do so we all have to enjoy those moments. We can't focus on what he can't do. He can't get a license, that is a fact. He can get a state ID that looks very similar. He can't drive a car but he can drive a golf cart! Making him happy gets me through life. He is spoiled but that is okay in my eyes. He has a difficult life and I need to make it meaningful.

My heart is ready to burst

I have had so many things to write about it but I haven't had the time. I never seem to get a moment to myself. This just can't wait.

Brendan has been obsessed with the Police pretty much his whole life. He watches COPS, he has dressed up as an officer many times for Halloween and has owned over 20 pairs of handcuffs. He always checks out their cars to see what model they are driving. If he wasn't disabled he probably would become an officer. He is 16 and the opportunity that has been given to him makes me what to cry, happy tears of course.

A few months ago Brendan was telling me that he got a job at the Police Station. I didn't know whether to believe him or not since I had not heard anything from anyone else. I knew that he was going to intern over the next few years but the Police station was never an option. A few weeks later his teacher text me letting me know that in fact Brendan was offered an internship at the Police Station. She asked if we had a different wheelchair so that his job coach could fit it into his vehicle since he drives him to his job weekly. We jumped on this immediately and found him a used folding wheelchair and he was ready to go in just a few weeks.

I am positive that Brendan is responsible for making this happen. He became friends with the high school officer over the last year. He tends to befriend the school nurses and security officers so this was of no surprise. A few months ago he started to earn weekly rewards to eat lunch with the nurse and police officer on Friday's. I suppose this is where he formed a strong relationship and began talking about working there. I had no idea any of this was in the works and I still can not believe this is happening for my son. This town is amazing. The police department is going above and beyond.

I can't even describe my feelings. I get teary eyed thinking about this opportunity given to him. Everyone has always been extremely amazing with my son and he has always made strong relationships with people along the way. Seeing how happy he is melts my heart. He was able to go on a ride along with his officer this week and they happened to witness a car accident involving a deer. The officer had to shoot the deer to end his suffering and Brendan knew exactly what was going on. He had excitement on his first ride along and while we feel badly for the deer we are thankful his first call with a shooting only involved an animal. I understand anything can happen but I can't let fear keep my son from living life to the fullest. This is an amazing opportunity and seeing him happy is everything to me.

The Police Station created a post this afternoon and Channel 12 News got word and contacted the Police Station. The Police Chief called me and asked if the News station could contact me and set up an interview and film him on the ride along. Obviously I said YES! He also gets to go to Dunkin Donuts in town with the Police Station for an event for Veterans in March. This is beyond exciting for him. Thankfully he loves all the attention. He is getting a fresh hair cut on Monday to get ready for the News!

Moments like these make you realize society isn't all that bad. My son is doing just fine growing up disabled in this world. While I can't help feel overwhelmed as he gets older and older I appreciate everyone that we have met along the way that go above and beyond to give this kid a great life. What 16 year old can say they work at the Police Station and ride along with an Officer?

Not a fan of the new leg braces! Pass Worker in the house and ready for Spring!

Thinking back I should have pushed to stay with SMO's. He hasn't even walked in the new braces yet because we can not find shoes that fit them! We hired a PASS worker again and this has really been a blessing. I am so ready for Spring after two whole days of warm weather!

Braces have always made shoe shopping difficult. We actually had it easy for a few years, three years to be exact. Three years out of his 15 years wearing braces we were able to go to the Mall and grab sneakers, any sneakers he wanted. Now we are back to these huge braces that cause him to need shoes 3 times bigger than his actual size, and sadly no I am not exaggerating. I measured him at the store! This year he happens to be in the most difficult size. He measured a 7 Men's with the braces on which is also a 9 in Youth but I am not sure they even make 9 Youth because we couldn't find anything. Apparently size 7 in Men's is almost non existent as well. Not only do we need size 7 but we need a size 7 in at least an X Wide. This should be fun! I know he needs ankle support but I don't think the AFO's nor GRAFO's are going to help his crouching. I have always thought the more rigid and higher braces in the end cause him weakness. The orthopedic and orthotist see him crouch while walking and talk me into these huge braces. I am really irritated at the moment and need to leave this house on my own, braces in hand and hunt down some sneakers! Lugging him in and out of stores isn't fun, especially in the Winter.

We finally hired another PASS worker. It has been a few years and I think we forgot how nice it is to have some help. He gets him off of the bus a few times a week and helps him settle and get a snack. He has been learning to get him into his stander, which is still a work in progress and has him go into his (new Freedom Concepts) Chill out Chair to stretch those legs a bit. He takes him to the bathroom and showers him every time he works. Brendan loves to shower daily and we only say yes every other day since he needs full assistance. Brendan loves being able to shower more often with his new aide. While it is always odd to have someone in our house, the extra help is amazing! I am not running to his bedroom 5x while making dinner and feel much less stressed out. I am loving him going into his stander and into his chill out chair multiple times a week. I don't feel as guilty not having the time to do everything that I want him to do and that alone is worth having someone else in my home. We need to get used to it as it will become the norm after he turns 18.

Is it Spring yet? We just had two beautiful days after a few weeks of extremely cold weather. Today was in the 50's and made me want Spring to arrive so badly. I have already been itching for Winter to be over and it feels like it just started. At least the ground hog didn't see his shadow this year, that has got to mean something, right?! I am ready to go camping again and finish our pool area and go on walks with the kids. Brendan has actually been riding his bike all Winter except for the last few weeks due to insane cold temperatures. He was riding with temps in the 30's and I love it! He got a larger bike this year from Freedom Concepts since he outgrew his last one.

42 more days and counting until Spring arrives!

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.

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.

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.