Channel 12 news

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.

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?

Sunday, February 17, 2019

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.

Sunday, February 10, 2019

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.

Friday, February 8, 2019

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?

Tuesday, February 5, 2019

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!