Channel 12 news

Saturday, August 24, 2019

13 years ago my goals were very different

Brendan was 3 years old. I was just beginning to accept this life thrown at me. I definitely was not through all of the stages of grief. I may have been slightly in denial, but I am not positive. I just remember 13 years ago I made a vow. I said that I would never order Brendan another wheelchair. Boy was I wrong!

Thinking back to those first years is tough. I still feel sad every time I think about his birth. I just wish I could have changed that day. I wish I went to a different hospital. I wish it wasn't Thanksgiving. I wish people listened to me. But I can't change any of it. Here we are 16 years later. Not only could I not keep that vow, I literally had no control over it. I thought I could 'fix' him if I tried hard enough and did every therapy available. I thought he would progress but little did I know most spastic quads regress as they age. It isn't the proper term because the brain doesn't regress or become any more damaged but the spasticity takes a toll on their bodies and effects them adversely as they age. I had so much hope so no wonder I hadn't reached acceptance.

It is far from easy being 23 and having your first child endure a birth injury that would effect the rest of your lives. I had friends at the time but they all had typical babies. They all grew and progressed at a normal rate. Over time it depressed me to hang out and see all of their babies growing, babbeling, crawling, walking, talking. My son couldn't do any of that. I had to eventually seclude myself for a while. I had to grow (stronger). I had to learn and I had to prove to myself that I was going to be the best mother that I could be for my son. He didn't choose this life. He got the short end of the stick. He was also thrown into this life without anyone prepared to raise him. My marriage ended. I had to work part time so I could take care of him. Life changed in an instant. I was trying to figure out this new path. I am not sure if denial fits exactly because I did absolutely everything for my son. My life revolved around him. I had set him up with therapy at 6 months old and I accepted everything that was offered. He had 3-5 appointments every single week. I took him swimming and to music gymboree and 3-4 therapists would come to our home. Every single week. I took him to the park and I would take him for walks in his wagon. I kept him busy. I kept my mind busy. It was just him and I at the time. I had all day to care for him. I worked back to back shifts on the weekends while he stayed with his dad and I was utterly exhausted during the only time I didn't have to care for him 24/7. I did it all for him. I don't regret it one bit. He wouldn't be where he is today if I hadn't been so motivated.

He turns 17 this year and I can't believe it. Kids grow up way too fast. Some days it feels like I just ordered his first wheelchair. It is odd but I still can picture every moment when his first chair was delivered. I wasn't mentally ready and I absolutely hated it. I think the therapists talked me into it for bus transport. He would start school at 3 years old in order to receive therapy because he would age out of early intervention at age 3. It looked huge and it was too big for him. Back then they didn't have adorable little wheelchairs. Although I am sure those moms starting out on this path don't think they are adorable at all. It must have been so tiny because it actually fit behind the drivers seat in my X-husband's car. I can't even picture how small it actually was because in my mind it was a monstrous piece of equipment. I seriously hated that wheelchair and never used it and instead I ordered a Convaid EZ Rider stroller and let me tell you those are the best! We have had many sizes and they have served him well. I highly recommend that brand and for any mom not ready for a wheelchair.

I would say Brendan was around 8 years old when I finally was ready to order a wheelchair. Mentally I was okay with it. I wanted a power wheelchair mostly because I didn't think he could maneuver a manual wheelchair. His right hand was fisted most of the time and he kept it up in the air. He had very little strength. I was talked out of it and I am so glad I listened. Having a manual was the best therapy for his right arm and hand. He has also had Botox, therapy and arm surgery which has helped him gain so much use. He has been mainly in a wheelchair for 8 years now. That sounds insane! I have still tried everything including multiple surgeries, tons of therapy and working out at home constantly but ultimately Cerebral Palsy always wins!! I can't say that I didn't give it my all. He doesn't want it enough and when I say that I mean he doesn't want to walk. He is content sitting in his wheelchair. He is content having everyone help him. In a way that isn't a bad thing. I rather him be content then hating his life being stuck in a wheelchair.

I realized that I was the one that had to fully accept it. I was the one that had to change the goals in my heart. I was the one that had to let him choose for once what he wanted. I was the one who had to let go of the control. So here we are days before he begins the 11th grade (yes the 11th grade!) and Brendan just had his first power wheelchair fully approved by insurance. I was oddly ecstatic when I received the phone call. I never thought I would be happy hearing that his 4th wheelchair has been approved but I was. I have definitely hit acceptance 100%!

I will post pictures and videos once we pick it up. Brendan will soon be the proud owner of a Permobile F5 with standing feature! Everyone said that the standing feature would be denied but his Physical Therapist must have written one amazing letter because I do not have to appeal it. Permobile will custom build his wheelchair and we will pick it up in a month. How cool is that!?

He will still use his manual in the house and we don't even have an accessible vehicle at this time so he will use the power chair mostly at school for now. I need to figure out the best vehicle for him in the future so that his care takers can take him places as well. I want him to use this chair and love going out and about. He won't worry about fatigue or having people push him around or not being able to reach things. He can push a button and talk face to face with a cashier. He is going to love this chair and he doesn't even know it!

Stay tuned. This kid will be riding in style very soon.

Thursday, July 11, 2019

Summer Fun

Brendan is skipping ESY (Summer) School for the first time ever! He has a busy Summer and would have only attended for a little over two weeks so I said why not?! We went on vacation and he is going to a sleep away Summer camp in a few weeks. I am getting nervous!

We went to lake Ontario for our Summer camping trip this year. It was a great time. Lake Ontario is like an Ocean. I have never seen such a large Lake. The waves were like an ocean, it went on for miles like an ocean yet it lacked the smell. We honestly couldn't wrap our heads around it. Now I want to see all of the great Lakes. The campground was a lot of fun. We stayed at Brennan's RV Beach Resort. It has 3 pools, a lot of activities such as arts and crafts for the little kids, live bands and of course a beach. We took Brendan's golf cart for its maiden voyage. It worked out really well especially since the campground was so large. We used it constantly. Brendan is getting extremely heavy and awkward. Honestly he is getting too tall for me. Derek has to do almost all of the lifting and carrying while we are using the RV. I can no longer safely maneuver him in and out and I always feel bad but Derek just does it all and hardly complains.

Brendan was really excited for someone else in the house to have surgery. Chloe hurt her elbow during cheer practice back in October. She fractured it in two places. She was given the clear to go back to cheer just 6 weeks later. I questioned this but no one else did so back she went. Her elbow hasn't been right since and today she had to go under the knife. They had to remove a piece of bone and reconnect a ligament. She is excited to get back to normal. Brendan is excited that someone else had to go through what he goes through constantly.

We have been trying to enjoy life, raise 5 kids and continue to grow our business. Life is constantly chaotic so I love when we hit the road in the RV. I wish we could go more often! I am still surprised at how well our family gets along in a 31 foot RV for 9 days. We have the best family.

I have been getting Brendan ready for his 12 night stay at camp. I am getting really nervous. I never let anyone else care for him like this. He can not have any electronics, not even his phone! I think I might worry the entire time. I really hope he enjoys it and doesn't get home sick. I don't really think he knows what he is getting into. We have to pack a lot of stuff so I am preparing now. Wish us both luck!

Time to get some kids off to bed!

Tuesday, April 9, 2019


There are moments when a little bit of normalcy pop up out of nowhere. It doesn't happen often but it happened this week.

Most days aren't typical. Most people don't have to help their 16 year old complete daily tasks from the moment they wake up until the moment their 16 year old goes to bed. It has become our normal but some days it hits you more than others at how exhausting, both mentally and physically, it can be.

I don't normally dwell on it. I just do it. Over the last year we have been working very hard on independence and he has come a long way. He has been motivated for the first time ever in his life. He wants to do things on his own and has been able to do everything we have taught him. We are so proud of him and will continue to redesign the house so it works for him. The next task is for him to be able to get into bed all on his own. He always has to go to bed when we are tired or ready for bed which probably isn't normal for a 16 year old boy. He often goes to bed at 8:30 pm during the school week because we get up to get his 2 younger siblings in bed at that time. We don't get to relax much during the day and we only want to get up once. It takes a good 20 minutes to get all 3 to bed as it is. He gets to watch television or go on his phone (when he has it) so he doesn't have to go to sleep, just go into bed. One day I would love for him to go to bed when he wants.

As you know from my last post Brendan lost his phone. He normally goes to bed and then listens to music or watches YouTube in his bed. He also calls me a good 3 times from his bed when random things pop into his head. That may sound cute but when I finally get to relax after a long day the last thing I want to do is talk on the phone minutes after getting him into bed. He also calls every night at 10 pm to say goodnight. Since losing his phone this has obviously all changed. He gets situated in bed with his awesome Bobopedic and watches Cops on his television. He has his bed remote hooked onto his nightstand and he has his television remotes on his bed. He sits up and looks very comfortable.

Over the last few nights I realized that I can't receive any phone calls as he has no phone. He hasn't yelled to me through his closed doors. He just relaxes in his room quietly watching his show. The time comes for us to head to bed and I open one of his doors and peak on him. At this moment I felt the normalcy. My 16 year old has his television off, his remotes on his nightstand, he motorized his bed down and he is asleep on his stomach. He accomplishes all of this completely on his own and I love it. It is my little bit of normalcy in a not so normal life that I have been given.

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.