Let's talk about some apps to earn you cash back!

As a mom of 5 kids I have done a lot over the years to save money, earn extra money and get the most out of my money. I have always done things on the side in order to earn extra cash. I have always sold items I am not using on craigslist and now on Facebook. I even made birthday cakes on the side when we only had 3 kids. In case you didn't know I actually attended Johnson & Wales University for Baking & Pastry Arts, I even went on to got a degree in business. Many moons ago.

I also partook in extreme couponing before I had my 4th child, after him I lost any and all free time. I even had a stock pile. I would grocery shop at multiple stores and save more than I spent. It was pretty awesome but extremely time consuming. You really had to research and actually purchase coupons ahead of time to get them in time for the stores sales. It was intense but my husband did help with the research part. We watched videos and really got into it. I had a huge binder of coupons I always carried around because sometimes you lucked out and had a random coupon to get something for free.

After I had Andrew there was literally zero time for this. We also started up our business, Tiverton Tots LLC, while I was pregnant which put us on a different life path. I had to put all my time and effort into that all while raising 4 children.

The first app I ever joined was Swagbucks. If you want to check it out join with my referral link: https://www.swagbucks.com/refer/sviv3 (please copy and paste, I can't get links to work lately)

Basically you earn 'Swagbucks' which you can trade in for gift cards. I always trade for PayPal because I like the extra cash. Years ago I would trade for Dominos or Amazon gift cards. They have a ton of options. I find this app to be the highest in return because 2500 Swagbucks = $25 in PayPal cash. That is easy to attain. You can join the Facebook group and get free codes every day that give you a few Swagbucks. You can play trivia games at night and fill out surveys while watching tv or relaxing. You can also use their links to Shop online and earn a % back on items you are already purchasing. That is the best! It is entertaining and easy once you get the hang of it. I have earned $500 over the years.

I joined some new apps last year and absolutely love them. Everything takes a little time but I have earned $570 cash back on one app alone! Ibotta is currently my favorite because you instantly earn cash back, you don't have to trade points in for gift cards. Once you hit $20 in your account you can transfer to your PayPal account. Use my referral code: Beihsti for IBotta.

Shopkicks is the 3rd app I frequently use. I have earend $150 from Shopkicks since April. I am close to earning another $25 and am actually going out today to scan and just walk-in some stores. You can scan items at the store you are already in and can also get 'kicks' for just walking into the stores. Sometimes you can literally just drive by them and if you have your app open you receive kicks, CVS and Walmart work great for this! This app is really easy and can be fun. You can also earn kicks from in store purchases and on-line shopping. Please use my invite code: SAVE508049. We both can earn a bonus if you use this app right away. Just walk into a CVS, TJ Max or Walmart to name a few.

If you have any apps you want to recommend please let me know! I am always looking for ways to save and earn cash back. This family is expensive but every little bit helps and saving over $1000 a year on items I am already purchasing definitely helps with those bills.

And then he was 17

I am still not sure how I have been a mother for 17 years. Almost half my life now, although I can't imagine life any other way. It seems surreal that he will be an adult next year. He has had a great year and has really progressed in so many ways. I am very proud of him. He still needs to mature and learn how to handle his emotions but overall he is so far beyond what I ever imagined.

I thought back to his birth this year probably because his birthday actually fell on Thanksgiving this year. I was able to think back and not break down. Okay I may have gotten a bit teary eyed, it is impossible not to. That day changed my life and was just the beginning of his very difficult life. 17 years later I can say that we are doing awesome. He has seriously come a long way.

I decided long ago to take this life day by day. The future scared me. I couldn't handle thinking about months ahead never mind years. I couldn't picture our life, I couldn't imagine what he would be like or how he would act or if he would talk or walk so I kept my sanity by taking it day by day. After all these years I still live by it. I actually hate when I do have to think about the future and unfortunately that time is here.

I have to plan for his future at this point. I have to choose a path for him. I have to think past high school. I have also had to realize that he really isn't capable of holding a job. He has had some great opportunities and he is always out and about trying new jobs with his job coach but in reality he can't handle much. He has only one limb that works well. His brain is still not the typical brain of a 17 year old. He still has very little focus or motivation. I am just thankful he has been given opportunities and he is still living an extremely fabulous life. I do worry it will become boring. I worry that he will be a hermit and live in his bedroom. I do worry that people will stop being awesome and taking him out and going above and beyond. All these worries haunt me. Thankfully he doesn't seem to worry or be concerned for his own future. He lets me take care of all of that!

I try and not focus too much on the scary future because it will take me down the path of depression. I have avoided therapy and medication all these years so in order to keep it that way I stop myself from obsessing about things that I can't control. He has been happy and healthy and that is all that matters. We have avoided major surgeries and we just keep chugging along. I try my best to give him a good life. He has had an amazing year and has hit all the goals we created for him this year. He self transfers for many things and has taken a lot of physical duties off of us. He is now my height and almost my weight so it has become very difficult for me to lift and move him so I am fortunate he can help a lot! I tend to hurt my back instantly if I do need to lift him.

The days fly by and here we are with the countdown to 18. We continue to change the house to meet his needs and will continue to do so in order to help him be as independent as possible. In a way it is exciting to enter a new chapter in his life, I just hope that it goes as well as the first 17 years. He is one lucky kid surrounded by so many people that love him and treat him with respect. I am honored to call our town home and really appreciate our community that goes above and beyond to make this kid happy.

3 officers showed up to a birthday party at his school. The nurse held a little celebration for him at lunch time and his teacher sent me a picture. He mentioned that he was eating lunch with the nurse for his birthday but I had no idea they would have a little party and that 3 officers would celebrate with him. It is all about the little things and these little things make a huge impact on this kid!

Happy Birthday kid!

Time flies when you have 5 kids

Seriously the days are just whizzing by me. Where has the time gone? I swear Brendan just turned 16 and yet it is already his Birthday month. Chloe just finished working her very first job. She is only 15 and was hired at a Farm for the Fall Season. Every weekend she got to help all the lost people in the corn maze every. Makayla has offically surpassed me in height and she only turned 12 recently. Andrew is a busy boy and becoming very self sufficient. Our sweet Lily, known as the princess around here is going to be 5 soon. She started preschool this year and she has changed so much in the last few months.

Every year the eldest child has a birthday, as they all do, and we are all shocked at his upcoming age. Even his siblings can't get over him aging rapidly. We all couldn't believe when he became a teenager and then he hit 14 and 15 and 16 and now he is turning 17!!! It sounds so old and grown up. His sisters are baffled with how fast life flies by and recently exclaimed "next year he will be an adult". It is fascinating watching them all grow up before our very eyes. Facebook memories get you every time! You just can't believe how much they change in just a few years. Seriously once they hit 12 they start to become little adults. Memories pop up from 4 or 6 years ago when they are only 6 or 8 or so and now some are fully grown adults and no matter how many time Facebook shows you (like every single day) you are just shocked at their transformation.

We are sort of lucky because we still have the 4 year old to gush over. On the other hand we are really sick of giving showers, cutting nails, brushing hair and getting kids ready for bed but we realize all of the sudden they do everything themselves. I will miss all of that bonding time. We hardly ever even see the 15 year old. She does comes up for food or to ask for money. Our 7 year old showers and dresses himself so he is already on the path to independence. He even requests showers and actually remembers to bathe every other day. He is better than the older ones, well except for Brendan. That child lives life on a schedule so he has no issues reminding us when it is shower day. Most teenage boys stink and don't care about being clean but not Brendan. He is the complete opposite. Over the years I realized how alike our boys are. I always tell my husband, I never knew how typical Brendan really was until we had Andrew. Brendan has always been a total boy and most of those annoying quirks he had growing up apparently was just a boy thing. Playing with light switches, opening and shutting doors for literally no reason, making annoying sounds, having zero attention span....yup he was just being a boy. Who knew?!

Lily has been a busy little bee lately. Preschool has changed her. She loves to color and draw and cut paper.... Lots of paper like if I have to sweep up any more pieces of paper that are all over my dining room I may cry. She attends school from 9-3pm and continues to be non stop the minute she walks through the door. She is always off crafting something. We know exactly what to get her for Christmas and it will go into her bedroom so she isn't destroying the dining room an hour before dinner needs to be on the table. She is still very shy but preschool is helping her come out of her shell. She has made some friends and gained some confidence. She rides down slides all on her own now and had a blast at her brother's school Halloween party. Also, for the first time in 16 long years I did not have to walk to a single door on Halloween. She seriously ran up to the houses all by herself. She even tried to avoid going to the same house as her brother, Ms. independent. I can not even believe that I got to sit back and watch and yes I got to sit because we took Brendan with us in his golf cart. It was seriously the best Halloween ever. I just waved to our neighbors and happily sat and watched my 4 and 7 year old run all around collecting candy. We have earned this! 16 years of trick or treating. Many many years lugging Brendan up to the doors, in and out of wagons, strollers and wheelchairs. The last two years he took his bike which was also awesome but nothing can beat us all sitting in the golf cart and enjoying ourselves.

The days are still busy but not as exhausting as they once were. 4 kids are off to school by 8:15 am and then Lily heads in at 9 am. We actually get to go to work without any children! We don't have to keep them entertained, we don't have to feed them, we don't have to clean up after them all day long. It is peaceful and we get so much work done. It is very odd but in a good way. We have owned our business for over 7 years and have children with us since the day we opened. At least I know Lily is off having a great day and we get a break from all 5 kids for a few hours. I leave work at 2:40 pm and pick up Lily and then grab Andrew and head home to clean up and start dinner. We put 3 kids to bed at 8:30 pm and then try and relax until bed time. We don't have too much going on right now as far as sports. Chloe has cheer but walks home at the moment because practice is after school which is nice. Brendan hasn't started basketball yet but I can just swing by to get him after I grab Lily when that starts up. Makayla joined drama and is helping with an elementary art class once a week so we have a few pick ups but nothing crazy and the best part is we live right down the road from the schools so it takes no time at all. It is so much easier now that the little kids are older because I don't even have to pack them up, they can stay home with any sibling for 5 minutes. No sleeping babies to worry about, no coats or shoes to run around the house to find because they decided to take them off in the upstairs bathroom. Nope, I just say I will be right back and head out the door. These are the little things that a mom with many kids can appreciate. Running to the store and leaving them all behind is amazing. Getting to go on a date with my husband because our 15 year old can take care of them is the best, mostly because we don't even have to pay for a babysitter.

So somehow another year has passed us by. Brendan turns 17 on Thanksgiving. My mom and her husband are off to Arizona already for the Winter. The leaves are falling fast and cold weather is approaching. 2020 will be here before we know it and next year at this time one of our children will be almost an adult. I am trying to enjoy all the moments, whether chaotic or not because I know one day they will all be adults and all of these hectic days will be in the past and I will have a quiet house and miss the absolute chaos that I have come to secretly love.

Throwback of Brendan since it is his birthday month and then the 3 oldest:

Life is too hectic....I forgot to post about Summer Camp

Wow I just realized that I forgot to post about a huge milestone this past Summer. Brendan went to Summer camp. Not just day camp. He went off and spent 12 nights at a camp multiple states away from us. We found a camp in NJ. We were both nervous but my husband was very excited for the much needed break.

We went on a road trip back in April during April vacation and we were able to tour the camp on the way home. We had kept it a secret the whole trip because once Brendan knows something he won't stop asking questions. I could not be stuck in an RV for 7 days answering questions that I didn't know, about a summer camp I had never seen. So we told him 30 minutes before we arrived and he was absolutely shocked. He took the news well and was excited to see the camp. He even asked some really appropriate questions. The most important question he asked was if he could bring his cell phone! The answer was no, no cell phones are allowed. No computers, no phones, no communication accept for me emailing or calling to ask about him. I couldn't even speak to him. That was a little intimidating, even for me.

I really thought he would not want to go but instead he was very excited. He would attend in August so we had a few months to prepare especially mentally. It was the first time Brendan would ever be away from me for that long. I realized that Brendan has never ever slept away from me or his father for more than one night and now he was going to sleep at a camp without knowing anyone for 12 nights. This is a huge! I think the longest he has been away from me was when he went to Disney with his father which I believe was 7 nights at most. 12 nights felt like an eternity.

His younger sister and I drove to NJ to bring him and we made a weekend trip out of it. He was fine until the day it was time to be dropped off. He was beyond nervous. Drop off wasn't until later afternoon so his anxiety spiked. We took him out to lunch and to the mall to get his mind off of it but that didn't help at all. He was consumed by his nerves. He didn't even eat his french fries at lunch but he did manage to get his steak down! He even broke down crying at lunch. I didn't know what to do or say. Makayla and I felt so bad for him. We took him to pick out new shoes for school and then left to go get ready for drop off.

I told him girls would be at the camp and he smiled about that!

Super nervous leaving the hotel!

Once we arrived he was amazing! He didn't cry at all. Drop off was very different than I had expected. 3 people approached the van and took out all of his luggage and helped get his power travel chair out. It was top notch treatment. They had an outdoor area where we checked in and they told him what cabin to go to. It was all so fast. They would have whisked him away right then and there...5 minutes after we arrived. I asked if I go to the cabin with him and they said I could so I asked Brendan if that is what he wanted. He agreed so off we went. He started talking to one of the counselors that was unpacking on a bed across the room and he warmed right up. He never cried. He said he was ready. So I just left him there in his wheelchair with all his luggage. It was so odd. I had to leave my child they knew nothing about besides some detailed forms I had filled out. I have never done anything like this but I think I was having a harder time than him. He made it so much easier being so brave. I was shocked because after his morning anxiety I thought he was going to have a major meltdown. Nope, he was awesome! As always.

Makayla and I felt so weird just leaving him like that but off we went to enjoy some time together. Of course a major storm rolled in the next day and the camp seriously lost power for days. Not only power but their phone lines. I tried all day getting in touch to see how he was doing and couldn't get through. On our 6 hour drive home I realized I could email them so we emailed back and forth for check ins. He was homesick the first few days but only during meal times, probably because we always eat together for breakfast and dinner. I was told after a few days he was loving it and embracing camp life. I wasn't able to talk to him at all. I waited for a post card but never received one. I couldn't wait to hear how it was.

We figured Brendan would say he hated it and was never going back because that is what he does even if he actually enjoyed something. We were prepared for him to say this over the next few months but instead he actually acted like he liked it. He did say the beds were uncomfortable the food was bad which sounds 100% like camp to me! I told him we would get him an egg crate for the bed next year (this was my test question to see how he would react) and he said okay. WHAT?! He didn't say No, I am not going back but instead agreed. So he is going again next year and he will probably not be as homesick. I am so happy he enjoyed it. 12 nights and no electronics is so good for him. I am going to try and get his friend Jack to go with him next year.

They didn't send any pictures or any information on how it went and I didn't get much out of Brendan but the bottom line is he enjoyed himself. He survived 12 days away from us. I should have less anxiety next year and hopefully a storm doesn't take out their power and phone lines on day 1! So amazing that camps exist for disabled children like this. It was an experience I never thought either of us would have yet we did.

Brendan is growing up way too fast.

Brendan turns 17 next month. I am not entirely sure how this is even possible. 17 scares me. 17 means he is almost an adult. Most of you are probably excited as your children reach adulthood but I am terrified. Everything changes. He exits high school. I have to become his guardian because he is clearly not capable of making serious decisions on his own. He begins day programs and I have to really hope we find something that works for him and that he enjoys. These things have been running through my mind constantly and I am stressing out. I think once we start the process on all of these things I will feel better. I am just waiting for it and that gives me anxiety. So many unknowns.

Although half the time I am stressed out the other half I am beyond thankful. Brendan has come so far in life. He seriously handles this life better than I could ever have handled it. He has had 13 surgeries! I have only ever had my wisdom teeth out. I can't imagine being cut open. Yet he goes in so strong and comes out even stronger. He is stuck in a wheelchair yet he is happy. He is becoming more and more independent. He is constantly maturing. Throughout his life my husband and I often have conversations revolving around Brendan. By often I mean daily! Years ago we wondered if we would ever be able to carry on a real conversation with him and now we do! Years ago we wondered if he would ever mature and not act like an immature kid and he does! Not always but he often blows me away with what he says and asks. I never ever thought he would be able to use the bathroom on his own and yet he does. I never thought he would be able to get his covers off and sit up and wait for us to come dress him in the morning but he does every single day. I never ever thought he could get off his bus and enter the house 100% independently and he currently is. He is simply amazing!

I feel like we, well lets be serious.... me, have made great decisions over the years. I have had to make many difficult decisions. I have had to say yes to way too many surgeries. But overall I truly feel that they have all been the right decision. I honestly do not think he would be where he is today without going through the many difficult times. When I look back I am flabbergasted on how amazing he is going under the knife. He has been casted and braced and stuck in bed for days and whenever we think back we are like, WOW, he handled that amazingly well. I keep telling myself this because I am trying to prepare myself for spinal surgery. His scoliosis doesn't look good. His back is deforming more and more as he grows. I hate this. I hate that I couldn't prevent it. I hate that I blame myself for it. I hate that this could very well be surgery #14. I cry instantly thinking about it. My husband normally showers and dresses him and didn't want to bring it up to me the other morning but he did. I instantly started bawling my eyes out because I already knew. I gave him a shower days before. I notice everything. I know it is getting worse and I am avoiding it but that won't do anyone any good. It is time for x rays and it is time to hear the news I never ever wanted to hear. In all honesty this surgery scares the sh*t out of me. I have started to read stories about it because I know it is coming. I am trying to prepare myself.

This CP life is not easy. Not only for him but for everyone that loves him. I never knew I would live this life full of heartache and stress. Almost 17 years in, now that is crazy! I am hear for the long haul. I will do what is best for him, at least I try. I often wonder if I should have corrected his left hip and if not doing so caused his scoliosis?! I want to think I made the best decisions but then I question myself.

So hear is to 17! Maybe I am wrong and he doesn't need surgery. Honestly I am not usually wrong, my mom radar is on par.

Now to leave this post on a good note. Brendan decided to attend the Homecoming dance this year. He hasn't wanted to go to dances in years now and randomly he told me he wanted to go (days before the dance of course) and he looked awesome! His pants look so much better in person. My husband wheeled him over to me in Burlington Coat Factory wearing them and I was like OMG I love them! Girls danced with him and Senior boys took him out on the dance floor. I really think he will attend his Prom and I was just convincing myself that it is okay if he doesn't experience it if he doesn't want to. I am one happy mama.

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.

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!

Normalcy

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.

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.

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.

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 https://www.wpri.com/search?q=brendan%20o%27brien or go to www.wpri.com and click on street stories

https://www.wpri.com/web/wpri/news/street-stories


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

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.

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:

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?

Living this difficult life

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

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

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

NOPE! He received these:

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

Compared to his regular sneakers

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

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

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

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

State ID and Golf Cart

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

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

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

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





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








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