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.

Thursday, September 27, 2018

Do you always wonder if your child has Cerebral Palsy from a birth Injury?

Most of you may know my birth story. It will forever be ingrained in my brain and it isn't a happy memory. I was ignored, I wasn't examined and I was sent home after only having a non stress test all to be rushed back by ambulance with a partial placental abruption. If only my doctor or the nurses listened to me just hours before my son could have been born healthy. Instead he was born blue, had to be resuscitated, intubated (twice due to the wrong tube size) and then brought to a different hospital with a level 3 NICU.

Here is some great information to help you understand how a birth injury can effect your life forever. I know first hand because Brendan has brain damage from loss of oxygen due to medical negligence. I fought and won and am able to give my son the life he deserves. It isn't an easy process but it is worth it. I am so glad that I went through the process because raising a child with special needs is extremely expensive.

Check out Birth Injury Lawyers Alliance of Canada.

They created this infographic to help us all better understand what could have gone wrong.

Wednesday, September 26, 2018

2 days and 2 months from now...

In 2 days and 2 months from today I will be a mother of a 16 year old. I am not sure how that happened. How has life gone by this quickly? How have I been a mother to a child with cerebral palsy for 16 years? How have I survived the stress, grief, appointments, therapies and all of his behaviors? How have I learned to cope and love and even come to enjoy his idiosyncrasies? Somehow I have. Somehow I have made it this far. Somehow the future is slightly less scary. Somehow the tears have become farther and fewer. Somehow I have reached 100% acceptance. Somehow I have become stronger and wiser. Somehow it will be 16 years or 5,840 days of living a life that I never imagined. He won't be getting his learners permit, he won't attend school dances and possibly not even prom (he doesn't like to), he won't have best friends like I remember but he will have the best life I can give him. I will never stop doing what is best for him.

16 seems like a turning point. I remember counting the days until I turned 16. I couldn't wait to start the new phase in my life. I couldn't wait to get my license and work a job and get a car. He experiences life completely different from what I remember and that often makes me sad. I have to accept that he still enjoys life. He doesn't know any different. I think the hardest part for me is that he won't be able to drive. He has been obsessed with cars since he was very young. He has watched countless videos of 16th birthday surprise vehicles. He has a love for chevrolet. He wants to get a job and always asks if he can go get a job. He always thinks he can do things that he just isn't capable of doing, yet! You never know.

I always keep the hope. I am going to take him to get a state ID so he can still have that piece of plastic similar to a license. He is actually already set up with a company that offers services to help him get a job the summer of being 16. He will work a few hours a week at different jobs over the next years to see what interests him. He is going to get a power wheel chair so that being in the community and working will be easier for him and he will be able to do things more independently.

He acts like a total teenager and hibernates in his room. He back talks when he doesn't want to do something. Thankfully he is still a mama's boy and loves me to death, even when he tries to act like he doesn't. A smirk appears on his face and I walk away smiling knowing that he still completely loves his mom. I have learned to love most of his quirks. I have learned how to better parent him over the years. I believe you have to parent each child differently. They all react differently. They all handle punishment differently. They all certainly behave differently. He needs calm. He needs me to talk through everything. He needs me to explain what I expect and what he did wrong and I need to speak calmly but firmly. We have come a very long way and he has learned to control most of his behaviors. Although he has never had an official autistic diagnosis he definitely has most of the characteristics. Knowing this and learning over the years what works best has helped me become a better and more patient mother. My job is to help him grow into a decent, loving and independent adult. It is a work in progress but I think I am doing an okay job. He has come a very long way over the last few years.

So I have 2 days and 2 months to perfect his epic birthday surprise. We aren't telling anyone so you have to wait and see. I just hope he likes it and isn't disappointed. He is very excited to turn 16 and I have been slowly letting him know that he may not be able to drive. I decided this year it was time to put some doubt in his mind. He thinks he can just go and get a license and drive. It isn't that simple. He is labeled as legally blind. He can not read or write. I explained the test you have to take to get your learners permit but then I read you can actually have someone read you the questions. We may take him to classes and let him take the test. If he fails he fails. We practiced with on line questions on the way to the abilities expo and he actually got a lot of the answers correct. I couldn't believe it. Maybe if there is a will there is a way. I just don't think it will be at age 16 or 17 but maybe one day he will prove us all wrong and actually drive.

We have gotten through all of his siblings birthday's for the year so the countdown is on! 16 here we come!

Sunday, September 23, 2018

Boston Abilities Expo Experience

This was our first visit to an abilities expo. I was oddly excited. We really enjoyed it and spent a solid 4 hours looking and trying out everything. Brendan was a little overwhelmed. He handled it great and tried out bikes, power chairs and the chill out chair.

School has been pushing for a power wheelchair for Brendan. I knew that I wanted him to have one when he turned 18 but I am realizing he may need one sooner. In his high school they start to go out into the work force. They actually go to work for part of the week as they age so this is something he will need before adulthood. I had my heart set on the Permobile standing power chair. I wanted to see all the other options before he trials one. I am a little torn. I loved the Rovi x3. The size, the features and the look of it. Brendan did really well driving them around. One gentleman even commented that he picked it up very quickly for a first time user. I was really proud of him today. He tried everything out without any attitude. Even though he was overwhelmed he didn't break down in any way. He was transferred to many chairs and a few bikes and was amazing through it all.

We also really love the E-Fix power add on drive. These wheels pop onto your manual chair and a joystick is added. Your manual chair becomes your power chair. We love this option because the chair is still lightweight. The base doesn't change and he can still power move his chair. He seemed to like it. You can pop on your regular wheels if you feel power isn't needed like in the house. I feel this is all he really needs to get around but the power chairs do offer some features that I feel he should have.

For instance, the power chairs have seats that raise up so he can be at eye level. It was honestly amazing to look and talk to him at my level. I am always leaning over or crouching down to talk to him. He must always feel beneath everyone. Just talking to him face to face felt amazing! I know standing is extremely beneficial and he doesn't stand enough. High school really slacks off putting him into the stander even though he is supposed to stand daily. This bothers me but I totally get it. It takes a lot of time to transfer him and stand him up to begin a lesson. If he had the Permobile power chair he could easily attach two positioners, push a button and stand up. Sounds simple. Sounds like there could be literally no excuse. He could stand up to reach for things. He could stand up to talk or to simply stretch out his legs if he felt the need. The only downfall is the front wheel drive. It has a wide turning radius and the base looks larger than the Rovi x3. It didn't look large in the expo but in the classroom he would definitely take up some real estate. It is actually a very difficult decision. I need to talk to some mom's or people that use these chairs to make a better decision. I am also going to ask to trial both power chairs. I think using it for a few weeks would help make our decision.

Brendan didn't really have a preference. If we asked what chair he liked he would always say he liked his manual chair the best. I found this baffling because he has always wanted a power chair. He has used his manual chair for almost 8 years now so maybe it is what he is used to. Part of me feels the power chairs are a little overkill for him. I realize we do push him a lot in his manual. He isn't 100% independent in it. He tires or is slow so for him to keep up with us we push him. It would be nice for him to just wheel along side of us and not exert any energy.

We had to have some fun too so we tried out a really cool power assist tandem bike, huka Orion. It was so much fun to wheel around with little effort. He got to sit right next to me. He had a huge smile the whole time. he really enjoyed this bike. However the price tag is large, $8000 large! He also tested out the Freedom Concepts Adventure bike. It is the next size up for him. The largest and we placed an order! He chose red this time. He has had two Freedom Concepts bikes over the last 12 years. I guess he wanted to switch it up. I can't wait for him to fit right on his new bike. His knees are literally hitting his handlebars on his old bike. He has been using it so much so it was a much needed purchase.

We also checked out the Freedom Concepts Chill Out Chair. I recently came across the name and have been wanting to check it out in person. I have been wanting to get him out of his wheelchair off and on so he isn't always sitting in that 90 degree angle. It is super comfortable and has an ottoman. He actually has some growth in the larger chair which is great. He seemed to really like it. It has a tray that can slide over him so he can still use his computer or have a snack. He can stretch out his legs and we can even use e-stim while he sits. It has great positioning. He wanted black so guess what, we ordered one. I can finally stop complaining about him always being in his chair.

Speaking of that I need to get off this computer and go stretch and work him out!

Wednesday, June 13, 2018

Life has been non stop... SPML AGAIN and NAPA has begun

I always want to come here yet never have the time. I honestly do not get any time for myself. Having 5 kids and their sports and therapy all while running a business leave very little time for me.

Brendan joined Drama this year as well as basketball. Some days he had both! He was in a school play (very small part) but it was so great to see him part of something like that. He absolutely loved it. They did Little Shop of Horrors and it was an excellent play. His siblings wanted to watch it multiple times and then we had to rent the movie. Brendan's challenger basketball team won the state champs! They rode the bus back to school with a police escort. HOW COOL?!

Brendan has been growing like a weed. He hit 5' tall which means he is catching up to me! His knees became crouched so badly again that I knew he needed SPML, again. This was his 3rd round. Although his spasticity is gone he still has some tone issues and his tendons don't grow properly due to having spasticity for 12 years. As he grows his tendons can't keep up which makes them short compared to his bones and muscles. He needs them feathered so than can stretch out and allow his legs to stand straight and tall. He also has very weak glutes and quads from 12 years of his body not allowing him to use the correct muscles to stand and walk. This all prevents him from being able to stand straight. This causes him to become exhausted while walking. Fortunately we had signed up for NAPA last year which started this week. Dr. Nuzzo's staff squeezed him in weeks before so we could continue with therapy. Otherwise I would have had to cancel because therapy wouldn't have been very benficial with legs that couldn't stand properly. I am so glad it all worked out. There are amazing people in this world.

Sports are slowing down and soon we will be camping, finally! But first Brendan has 3 weeks of intensive therapy with NAPA. They recently opened a center in Waltham, MA. I signed him up a year ago and suddenly the time has come. We commute daily which takes about 4 hours total. He has 3 hours of therapy and is doing amazing! I wasn't sure how he would act. The only therapist that could get him to work was Mike Poole. Yet he is going and smiling and working and I am shocked! He has 2 hours of neuro suit and one hour of cage therapy. He has one hour with an OT with the neuro suit on and one with PT. He is 3 days in and has such a great attitude. I am so beyond proud of him. I think he is already getting tired so I am not how I will feel during week 3. I hope he can rest well on the weekend and plow through week 2 and 3. Luckily his dad has a hot tub and pool so he can relax and heat those muscles up.

My main goal is for him to gain some stamina in his walker. I hope I learn some new tricks on strength training. I already have seen a few more things I want to order for his home therapy room. It is a huge commitment and I love that our family makes it work. I am so happy we can commute and I can still be home for the morning routine and be home in time to help with dinner. His hours of therapy worked out perfectly and saved us some time sitting in traffic.

Wish us luck! 12 more days to go! Once he is done that will be 45 hours of therapy under his belt!