Channel 12 news

Thursday, March 28, 2019

I try not to post the negatives but.....

I was literally talking to my husband about how awesome Brendan has been doing lately. He is maturing and behaving so well. He has definitely had his issues in the past. He has autistic characteristics due to his brain damage and we have worked very hard to help him become the person he is today. Just hours later we got hit with a dose of reality.

Brendan has never liked answering questions. We have worked with him for many years regarding this issue. We feel it is important to answer questions. It creates conversations and helps people learn about each other. It is a very important piece in communication. Brendan only likes to ask the questions. When he first learned to talk he would ONLY ask questions. Every phrase that came out of his mouth was a question. Over the years he has progressed. After he had SDR his speech greatly improved. He can carry on conversations. I never thought the day would come. I love long car rides with him because we talk and at times it seems so normal. He calls me often when he visits his father and we have real conversations. It is drastically different from years ago in an amazingly positive way. If you ask him a question he responds with a question sometimes completely off topic. I won't answer his question (unless I am not paying complete attention) until he answers mine, this has worked fairly well. At times he can be in a mood and he can't always control his behaviors.

I don't let autism be an excuse. I don't let having cerebral palsy be an excuse. I don't let being a 16 year old boy be an excuse. I treat him like I treat all of my children. I hold him responsible for his actions. I am not easy on him and never will be. My job is to help him grow up to become a functioning adult.

Well he decided to test our entire being the other night. Derek had been asking him why his head rest kept becoming loose. He has a head rest on his wheelchair because he is transported in it. Well over the last few weeks it is hanging down and therefore is not in a safe position for transport. Derek has to fix it daily which is annoying. It didn't become loose all weekend so we knew someone had to be doing something at school. We actually have had this issue in the past so we already knew someone was pushing him with it or leaning on it. Brendan wasn't in the mood for a question especially for the 3rd time this week. He obviously knew how it happened but for some unknown reason he didn't want to tell us. It really wasn't a big deal. We just like to keep his equipment in tip top shape. It isn't an easy or quick process to fix his equipment. He decided to go off the deep end. He decided to not control his actions. He decided to try and kick Derek with no success. He then picked up his (overly expensive) smart phone and bite it, breaking not only the screen but the entire display. It is completely broken. Do you want to see mom flip out? Oh yes mom flipped out. Why in the world would he break something he uses daily and loves over a dumb question? We will never know. It is all about control or lack of. I get that he can't get up and walk out of the room. I get that he can't always express what he is feeling. The words don't always flow freely. He can't always explain everything. But I do not get destroying something we spent a lot of money on. I don't get how you can't control your anger. I get mad. I yell but I never ever get physical. I never throw things or break things. No one in this house does. He gets this look in his eyes and he tenses up and he gets a little crazy. He has acted like this from as far back as I can remember. I still remember his dad telling me "I think he is autistic" when he was 2 years old. I was no where near ready to accept that diagnosis but over the years it all makes sense. Does that mean it is okay to act like this. I don't think so.

So we had a long discussion and decided to discuss his punishment the next day so that we could calm down. He lost all electronics for one full week. Luckily we had insurance on the phone so it only costs $100 to fix. (hopefully) He has to earn this money by dong chores and therapy. We created a list of things to do and he has a jar in his room and he has to earn the $100. He has to request to do the things on the list, we will not ask him. Some of them include cleaning his toilet, cleaning his bathroom counter, taking a walk in his walker, riding his bike 2 miles instead of 1, going into a long sit, going on the vibration plate. All of these things have a monetary amount next to them. It will probably take him over a month to earn the $100 so it should be a very good learning experience. Our hopes are that he learns to control the aggression. He controls his temper. Everyone gets mad. Everyone wants to throw things (or in his case bite things) every now and then but we can't always follow through with what we want to do. I hope that he learns a lot from this event. I hope next time he chooses not to over react. Time will tell.

Oh to parent in the year of 2019!

He did still get to go to subway with his Pass worker since he had a great day and accomplished everything he was supposed to.
Apparently he was in a good mood. His Pass worker even treated him to an ice cream sundae after.

Sunday, March 24, 2019

Thankfully Brendan is having the time of his life

It is hard for me to express myself in words. I often find that I can write what I am feeling much easier. When I am on the spot I tend to freeze. I need to think about the question and digest it and then answer.

I wish I could have said so many more things in the news story. Brendan is seriously one amazing kid. Yes he doesn't leave the house all that much but partly because in some ways he is a typical teenager that doesn't want to. He doesn't have that many friends but so many people love this kid. I see it all over town. He can't just go get his license or go get a part time job like kids his age but he gets many opportunities like interning at the Police Station or actually going on stage in a high school play because the drama teacher is absolutely amazing. He is a happy kid. He enjoys his life. Some days are boring but then I think about my 11 and 14 year old and realize that they have some really boring days too. Having 5 kids means that we spend a lot of time at home. We can't spend a lot of money so we hang at home and have family movie nights or take walks or take the golf cart though the woods in the middle of Winter.

We try to give him a fulfilling life. We have pushed ourselves to the limits with this kid. We have taken him on water slides which means his tiny mother carried him up those huge flights of stairs just so he could experience it. We take him camping and to amusement parks. We always make sure he can do everything his siblings do. Unfortunately it is getting more difficult, I am not going to lie. He is 16 now and 5' tall and only weighs 20 lbs less than I do. Lifting him is getting more challenging. It is hard to maneuver him into vehicles and rides. We took the kids to Disney a few years ago and we would take turns on taking him on the rides. I think it was my last year of being able to walk him over to the ride and lift him in. His legs are so long now that it is really difficult to get him in quickly.

Running around with a bunch of kids in tow is never easy. Dragging Brendan around with us is even more difficult especially if we are running to a bunch of stores. We have to lift him into the van, take his wheel off of his wheelchair and lift that into the trunk and then do this all over again once we arrive at the store. If we are just running in and out this becomes exhausting. Then we have to push him around half of the time because either he is too slow or he tires and doesn't want to wheel himself around. Although he doesn't have a lot of friends his age he knows everyone. It is always nice to see everyone saying hello to him in the school hallways or if he runs into classmates while out and about. He often is more friendly with adults. He has been like this since he was 3 years old. I always thought this was because adults have been a huge part of his life since he was 6 months old which all began with in home therapy. He has also probably been to a thousand doctor appointments. He has therapy in school and saw the nurse daily for years. They are a huge presence in his life and have always been wonderful to him. They are his friends. He wasn't able to keep up with his peers along the way but adults stay and talk and listen to him.

Brendan has a great life. He has so many positive experiences and amazing people that show love and support. We never want pity. We want people to see this kid for who he is. He has challenges but has a huge personality that draws people to him. We will never stop giving him the life that he deserves.

One thing is for sure though. He has the best siblings. 3 of them begged to sleep in his room last night so they had a sleepover. Things like this make him very happy. He loves his siblings to the moon and back.

Saturday, March 23, 2019

Brendan is on the news! WPRI Channel 12 Street Stories

Brendan is in the limelight once again. This kid is meant to be seen and heard. I had mentioned that Brendan is working with our local Police Station as part of an internship. Well Channel 12 News got word after seeing his picture posted on the Police Facebook page and here we are. They filmed him at the Police station, in the cruiser, stopping at our consignment shop and even in our house. It was such an awesome experience for him. He loved every second of it. He is now out with some of our officers at our local Dunkin Donuts for Veterans, elderly and the disabled to sign up with the Police and Fire so they will have it logged into their system. I think this is a great idea. If a call comes in they will already know that this house may need extra assistance. We have an amazing town. I knew that I would love raising my children here and all of this helps prove that.

Brendan is on Channel 12 News. You can try and look at it with this link but I am having issues getting it to post.
You can look at or go to and click on street stories

For some reason I can't make it clickable. Just copy and paste.

Tuesday, March 19, 2019

Busy week!

Brendan finally tested the Permobil F5 power wheelchair. We actually all loved it. Channel 12 came to our house tonight for over an hour to finish up his news story regarding working at the Police Station.

Even though I never wanted him to need a power wheelchair I must say he looked amazing in it. I was on the fence with the Permobil due to the front wheel drive but he drove it very well. We were all impressed even the tech from Numotion. He manuevered through the doorway and around a chair effortlessly. The options are very hard to get approved by insurance so we need lots of positive thoughts. I would love the standing option for him. He likes to stretch out his legs throughout the day. As he was testing the standing option out in the hallway the bell rang and there he was strolling down the hallway at the same height as his peers. It was awesome to see.

Walt Buteau with channel 12 news came to the house with his awesome camera man, John. They are filming Brendan to be part of 'Street Stories' with his involvement with the town Police. Brendan wasn't able to be as expressive as we had hoped. He has a difficult time answering questions so I had to be the lucky one to be in the spotlight. I am not looking forward to seeing myself on the news. I wanted it to be all him! They did film him driving in his golf cart and me reading a post from this blog! Fingers crossed I don't cringe through the entire thing!

The news story should be aired this Friday at 6:15pm, Saturday morning and on the Rhode Show. Hopefully it comes out okay! I believe it is shareable so I will try and share it here if possible.

Thursday, March 14, 2019

Channel 12 News!

Today Channel 12 is filming Brendan at the Police Station. He attends once a week for an hour or so for his internship. The Police Station posted some pictures on their Facebook page a month ago and somehow the News station got word and called to ask if they could film Brendan. The post was shared over 50 times and their page doesn't have a ton of action so it 'blew up' according to their chief. Channel 12 had called them within hours of their post.

We of course find this amazing. Brendan is always noticed. He has landed on the cover of a hotel brochure in NH. He is on the cover of a magazine in his stander at school. He ends up in flyers and is on the local RI CP chapter website. For some reason this kid gets noticed. Maybe it is his smile! He is very excited. I don't know when they are actually putting him on the news but I do know the plan is to go and film him today at the Station. I will be sure to post about it if I find out. He gets to ride in the cruiser again which is his absolute favorite thing to do.

I am still beyond thrilled that he gets to experience working with the officers. This is a dream come true for him and it is hard to believe it is reality. I never expected our town to come together and make this happen for him. He wants to continue to work there but I am not sure what is actually capable of doing. I told him to ask, you never know. He will never want this internship to end!

So stay tuned for information regarding when his clip will air on television.

Ready for the Day:

Saturday, March 2, 2019

Brendan is going to trial Power Wheel Chairs

The day has come. I have gone back and forth for years and I am not entirely sure why. I always said I would get him a power chair when he reached adult hood. His school PT mentioned starting the process during his last IEP and it made me think a lot about them over the last 8 months. We took him to the abilities expo and had him try out almost everything they had this past September and I fell in love with two of them.

Brendan has used his manual chair every single day since he was 8 years old. He has bigger triceps than us. He wheels fairly well but he tires quickly. He often asks to be pushed instead of bothering to wheel. I have been told over and over to get him a power chair by the distributors. In the back of my head I always questioned their reasons. Did they just want to make the sale? Do they really know my child? Do they think it is easier but don't understand my need to push my child? I was told he will need shoulder surgery as an adult if we allow him to wheel himself around for years to come. I always thought getting him a power chair would make him lazy. I never wanted this huge monstrosity in my house. I look at him and think he doesn't look like he needs one, whatever that means. He looks amazing in his manual chair. I never wanted my child in a wheelchair. At age 3 we ordered his first chair (which I hated from day one) and said we would never order another one again. I didn't fully grasp cerebral palsy at the time and I had no idea what a toll it takes on the body. I ended up ordering him one at age 8 and it gave him so much independence. He loves his wheelchair. He has always asked for a power and we adamantly say nope, you don't need one. But does he?

I had to dig deep and think about all of the ways a power chair can help him. He won't have to ask for help. He can jet off in an instant and see what he wants to see. He doesn't have to think how hard it will be to wheel up a ramp or across the store. He can raise himself up and talk to people at eye level. People don't always have to took down to him or crouch down and talk to him. I often get down to his level and speak to him as it feels more natural. A few months ago I wheeled myself using his manual chair one day while we practiced the routine we developed for him getting off the bus and into the house independently and honestly it was difficult, my arms hurt just from a few minutes of self propelling. I also realized that he is heading towards 17 and it may be more difficult to get insurance to approve one after he turns 18. They will ask why he needs one now when he didn't need one for the last 18 years. I am trying to get all my ducks in a row because from age 17 to 18 there are a ton of changes. We have a lot to do regarding him reaching adult hood. I better start this process and knock one thing off of my list.

I had been asking the PT to set up a trial for months now and it hasn't happened. I spoke to his orthopedic during the last visit and they told me if school drops the ball they can help order one. I thought about how much more difficult the process would be trying to order through a company and get a different PT to write up all of the orders needed for approval especially when they don't even know my son. I have let this sit in my head for months. It was finally on my list of things to do. Call and set up a trial at Hasbro PT and then I randomly received an email from his school therapy company that they can bring him a trial chair on Monday. Sometimes everything falls into place.

So here we are. He is going to trial a Permobile and I also asked for the ROVI X3. His PT is all about the Permobile but I fell in love with the ROVI at the expo. Honestly I do like the standing option on the Permobile however it is extremely hard to get apoproved and you have to have contraptions all over your body all the time in order to stand. I don't think he would like being restricted especially when he hates to stand. I am sure over time it would become second nature and he would stand up and sit down all of the time but in the end if that feature doesn't get approved I don't want that wheelchair because of the turning radius. The ROVI can turn on a dime. His vision isn't the best and he would be able to handle that wheelchair much better. I am excited for him to try them out and see what works best. I am sure actually testing them out for a few weeks will help make the decision easier. I really hope the PT lets me decide and doesn't push what she wants.

As of right now I do not want the wheelchair in my house. I intend to keep the manual for inside but I honestly don't know how long that will last. He is actually becoming very independent using his manual with transferring to the bathroom and getting out of bed on his own and I don't want to take that away. Not to mention does he really need a power chair to wheel down the hallway to his room throughout the day? I don't think so. He already marks up the walls and doorways enough with his manual. I picture gigantic dents and missing pieces of plaster with a power chair. The other down side is that we no longer have an accessible vehicle. He has a braunability transfer seat that moves out of the van for him but we no longer have a ramp. We do have a truck and can take it with us when needed once we purchase an appropriate stand to attach to the hitch. It just won't be as easy.

So many things to think about. I have never been 100% on getting him a power chair and I am still not. I am getting there. I do think it could be helpful. I do need to think about his future and working and having more use of his body without the worry of self propelling. He constantly drops items while propelling and I am sure the power chair is much smoother and easier to drive around.

If you have struggled with this decision and have any advice please share. If you have a chair you love please share a picture and tell me why you love it. If you went with the standing feature please let me know all about it. Besides the cool factor is it actually practical?