Routine

For a lot of kids with special needs, routine is one of the most important aspects in their lives. For Kyle, routine is a little different. Sure, he has the same morning and bed time routine, but I think that's common for not just individuals with special needs. Kyle is very go with the flow and likes to go out and be active. He hates sitting in the house (unless he's listening to Luke Bryan or watching Air Buddies on his iPad), and he adapts well to doing something different every day.

Kyle is always hype for family pics, but don't expect him to stand still or look at the camera. 

One thing about routine with Kyle though is he does not like when the five of us aren't together. After being away at school, it's something that I've noticed more and more now that I'm home for the summer. When I was at school, he would call almost every day or my mom would text me telling me he was asking for me. 

But it goes for the same with everyone else. My mom is a teacher, so she's home currently, but my dad works at a bank, so he's not home from about seven until four or five. Kyle will walk up to me or my mom with one of our phones and ask us to call "Uce" (my dad's name is Bruce, so it's pretty close). So we'll call, and as soon as we hang up, he asks us to call again. The same goes for my sister when she's at work or out with her friends. He asks for her until she's home. Even when I would pick him up from school before summer break, he would want to call "momma" until she came home from school. 

Kyle and "Uce" are inseparable

We think he just likes us to all be together, which is sweet. When we're all home or at least not away from each other for more than a few hours at a time, he seems to be more relaxed. A lot of the time he won't even acknowledge us when we're actually all at home or all out together, but as soon as someone isn't present for more than a few hours, it seems to throw him off. 

It's not the typical routine that everyone thinks of, but to Kyle, it's what routine is. It's not a matter of waking up at the same time, doing the same things, or eating certain foods, but just being a family and being around each other as much as possible. 

Story Time:

Going off of the caption from the first picture, it is nearly impossible to get Kyle to take pictures. Not because he doesn't like taking them, but because he will never be still long enough, smile at the right times, or look at the camera. It definitely makes for some interesting Christmas cards every year.

Another one of his favorite things is photo bombing. He always keeps you on your toes, and makes appearances when you're least expecting it. And he likes to have fun with the Snap Chat filters. Here's a few examples:

Kyle was not impressed.

The classic photo bomb, featuring my college roommates

Future Possibilities

   As Kyle get's ready to enter his junior year of high school, one thing we have to think about is his future. Kids with special needs can stay in high school until they're 21, but there are other options as well.

   One of those options is to go to college. Kent State recently started a program for students with intellectual disabilities. This is a two-year program that allows students to experience college and get a degree in Career and Community Studies. The mission statement of the program is: to create meaningful experiences for students with intellectual and developmental disabilities by maximizing opportunities in order to equip them to become self-determined and autonomous adults. 

Kyle on his first day of sophomore year

   Another option is employment. The National Down Syndrome Society talks about different options for employment. One option is to work independently, and apply for jobs/respond to ads and work for a business. Usually, these individual's are more independent and communicative.

   There is also a supported employment. These individual's work with a job coach to help teach them the specific skills they need for their job. At first it will be full time, but then the job coach will come to make check-ups or assist the person when a new task is introduced.

   There are also agencies that offer sheltered employment, which means there is little to no integration, but offers the opportunity to earn wages and work.

   Kyle will probably live with my parents after he graduates from high school, and my sister and I always talk about how he'll have his own room at our future houses so he can stay whenever he wants.

The three of us siblings in Myrtle Beach

Story Time:
 
   Kyle is a very active member in society. We always like to keep him involved in sports and such, but he loves going to concerts and on trips. He'll pack suitcases as soon as we tell him we're going someplace, and the day we leave, he'll sit in the car all day, sometimes with our dog, and complain all day until we leave. He'll load things into the car (sometimes random things we don't need), but he loves it. Whether it's camping, or going to the beach, the kid loves being out and about and seeing different parts of the world, as well as spending time with the people he loves.

Kyle and my dad at one of the many concerts from last summer

School

   In my first post I talked about how we moved when Kyle was younger so that he could go to school in a district that was more equipped for his needs. He was integrated into a normal class room setting when he was younger, but would have an aid with him at all times and would spend some of the day in a different classroom for kids with special needs.

   As he got older he would spend more time learning skills he can use in the future, like how to make different foods and how to use the microwave and such. His gym, music, and art classes are integrated though.

   Everything goes based off of Kyle's IEP though, which is an individualized education program. This sets reasonable learning goals for Kyle, and it states the services that must be provided by the school district for him. Kyle's goals are more towards getting him to be more communicative, whether it's with words or actions, and, as I said above, to teach him more skills that will help him in the future. These skills could help him get a job somewhere or just help him to be more independent.

   Kyle loves going to school, and when he was younger he used to wait in the living room for the bus and then skip to it every morning. He loved the bus, and there were some days he wouldn't want to get off it. The kids in his classes were great, and they really supported him in the classroom and whenever they saw him in the community.

   Towards the end of eighth grade, Kyle went through this phase where he would act up at school just so they could send him home. He would refuse to do work and act out towards his aids, and since I was home from college at the time, I would be the one to pick him up. There was a straight week where I had to pick him up from school, and each time he would get a stern talking to from my mom or dad, and eventually they threatened to not let him go to my dad's softball games any more if he was going to be bad at school. And that solved the problem for the most part.

Kyle dressed and ready to go for softball

   During Kyle's freshman year, my sister was a senior, so they could call her down to his classroom if he was refusing to do his work, which happened every once in a while. There was one day when she walked down the hallway and he was laying in the middle of it with his arms behind his head, refusing to get up for his aid. As soon as he saw her though he got up and ran back into his classroom.

   Now Kyle doesn't seem to have as many issues in the classroom, but we think that's because he's adjusted into high school. He still likes going to school, but the early high school wake up call is a little rough sometimes!

Kyle getting an award at school for his grades

 

Kyle as a Little Brother

   One thing Kyle is good at is being a little brother, which also means he can be a little shit sometimes. He’s my brother, so I’m allowed to call him that. He has the most evil laugh when he’s up to no good, which is quite often. His little devil horns pop right out the sides of his head.

Don't let the sweet and innocent Kyle face fool you

   When we would get into fights as kids, or if I didn’t do something he wanted me to do, he would go upstairs to my room and trash it. I had an alphabetized book shelf, and I would walk upstairs to find the books all over my room. Quite a few times I walked up there to see him throwing the clothes out of my dresser, chucking them over his head as he made a mess. Those are just a few of the times when he was just like any other little brother.

   Having two big sisters also meant being forced to do girly stuff, like play dress up or play with dolls. More than once Kyle was forced into an old flower girl dress by me and my sister, and we would play tea party or other games. My little sister painted his toenails once, and after that Kyle would always want his toes painted if we were doing ours. One day, however, Kyle decided he was going to paint his own toenails. Bright blue. He got nail polish all over the living room furniture, and we quickly had to flip all the couch cushions upside down before my mom found out we had left our nail polish where he could reach it. Of course, she found out about it, but there’s still one chair cushion she hasn’t discovered yet, and that was about 10 years ago. Sorry mom.

There's no photo evidence of Kyle in dresses, so here's him attempting to eat deep dish pizza

   Kyle’s almost never innocent, and when something goes missing, we know who it was. He used to take our shoes and toys and put them in suitcases that we could never find. Months later he would come walking out of a room in the house with this mysterious suitcase and we would find all the stuff we had usually already replaced. Quite a few times this would happen with car keys as well. I don’t think you’ll ever meet a family who has had to have so many keys made.

   His other hobby with this is electronics. He will take my phone and run around the house saying “MMMM” (that’s what he calls me), and he’ll make me chase him while he’s laughing the entire time. Or there have been quite a few times where our phone chargers have gone missing, and we’ll find them under his bed in his room or plugged into a random outlet while he tries to plug in his IPad (most of the time they’re not for the right device).

photographic evidence of Kyle taking my phone

   He can be a little stinker, but we have our cute family moments too. Kyle loves to cuddle and watch movies or sports, especially when it’s about his bed time. He does so many exciting things, and his possibilities are endless. Just because he has special needs, doesn’t make him any different as a sibling.

The R Word

   One thing I could go off on a tangent on is the use of the word retarded. No matter what context it is used in, it’s offensive. Whenever I hear it, I go out of my way to make sure the person understands what they said. Making fun of someone who can’t defend themselves is low, and even calling someone who doesn't have special needs retarded is still cruel. When you call someone the R word just because they do something dumb or are acting a certain way, you are comparing them to someone who may not have control over their actions and are innocent members of society. The use of the word drives me crazy.

Kyle on the Cavs court with me and my mom, as well as some awesome Special Olympics participants

   One organization that I really like is Spread the Word to End the Word. They work to end negative comments about people with special needs and have gotten over 600,000 pledges to stop saying the R word. Their website has different articles about the impact of the word, and they work hand in hand with Special Olympics to bring a positive light towards people with different disabilities

http://www.alsigl.org/news-and-events/news/163-spread-the-word-to-end-the-word-2016

   People will stare and make comments, it’s just the way it is. But there are plenty of good scenarios too. When we go to stores, we always see someone that knows Kyle and they’ll come up and give him a high five or wave to him. When I visited his school when he was a fourth grader, a group of girls in his class would sit next to him and try and get him involved in the activities. Now that he’s in high school, a group of softball players that volunteer in his classroom keep asking my mom to bring him up for games. There are twice as many good people than bad people out there, so looking past the negative ones and finding the moments when you’re proud of humanity are essential.  

Kyle and Sports

   Growing up, one thing me and my sister always did was sports, and Kyle was no exception. The kid is hands down the best athlete in our family, and definitely the most dedicated. The past few summers have been my off season for college softball, and nearly every morning Kyle would go up to the fields and hit with me. He'd have the car packed some mornings before I was even awake! But he's always been my biggest supporter at games. Maybe it's the sound the bat makes when it hits the ball, or the cheers that come from the dugouts, but he loves it. He's also been known for running out onto the field after games to break it down with the team.

Me and Kyle at Senior Day

   He's also set on the routine of going to my dad's Friday night and Sunday morning softball leagues. He has matching jerseys and sits on the bench during games, and is always the first one at the gate to give high fives and yell after innings. Softball is something special to Kyle, and you can often see him in the back yard hitting softballs off a tee or swinging at them like golf balls, but still getting some solid distance on them. He swings one of my dad's slow pitch bats like it's nothing, so he's pretty strong. 

   Kyle is pretty involved with Special Olympics and the Achievement Centers for Children, which hosts other sports leagues in the Cleveland area. He does basketball, soccer, baseball, and bowling, and has done track. He loves basketball, and has qualified for States a few times because of the skills challenge where he excels in dribbling and speed drills. 

   One of his favorite sports though has to be golf. He'll go to the driving range with my dad and hit buckets on buckets of balls, and he hits them pretty far. Putting, however, is not his thing, because he likes to hit the ball as hard as he can, so you can see where that would be a problem. 

   Watching Kyle play sports is one of my favorite things. He never has any worries when he's playing, he thoroughly enjoys every second of it (until someone steals the ball from him in basketball), and it makes me wish sometimes that sports were just as simple as having a good time and just playing. The smile he gets when he's running the bases or gets a strike in bowling is priceless, and watching him be care free and happy out on the field is one of the most inspirational things I could experience. When he comes to my games I know that he doesn't care if I went 0-3 on the day or hit a home run. He's just happy to be around the sport, and be with the people he loves.

Story Time:

Here's the promised driving story. So my dad is in a golf league and took Kyle out to the course with them one day. When my dad was up, Kyle would sit in the golf cart. What my dad didn't know is that Kyle figured out where the gas pedal was on the golf cart, so during my dad's turn the kid took off driving down the golf course and my dad had to chase him, all while Kyle was laughing his head off and somehow managing to drive in a straight line. No worries though, my dad caught him and Kyle was no longer allowed to sit in the driver's seat of the golf cart. 

The Up Side of Downs and the Buddy Walk

   One of the groups my family was involved in was the Up Side of Downs, which is a support and celebration group in Northeast Ohio. Their website has information on how to be a part of different support groups, information for new parents or expecting parents on how their lives will change, and general information about Down Syndrome. They host different events for parents and kids, and are a great resource for families that are still coming to terms with the fact that their child is going to have different needs.

   For me, the greatest part of the Up Side of Downs has to be the Buddy Walk. The event takes place in the late summer each year and consists of a mile walk in downtown Cleveland. The last few years it has taken place at Progressive Field, but this year it is located at the Cleveland Metroparks Zoo.

   People register under different team names that show support for their Buddy. The event has different sponsors, Walmart being a big one, and there is live music, giant inflatables, games, giveaways, and food. People line the sidewalks and warning track of Progressive Field and give out thousands of high fives.

http://slbuddywalk.org/about

   The Buddy Walk for us is a large family get together. We usually have a walking party of 15-20, and we'll either have a family get together at our house afterward, or go out to eat some place. It's an awesome event that truly highlights all the Buddies in our lives, and it's great to see all the different families come together to celebrate Down Syndrome. I always see people I went to school with that are there to support their family members, so the way it connects us all is pretty exciting. 

Starting off the walk!

   Another cool part of the Buddy Walk are the sponsors. Now, they send their various versions of promotions and giveaways to help market, but they also send a lot of mascots, because that's the best way to get the kids involved. Each time, a giant Energizer Bunny walks around handing out bunny ears, or this year a place even sent some super heroes for kids to take pictures with! Everyone that registers gets a matching t-shirt, but some teams decide to make their own shirts. These ones were a definitely a hit.

The Buddy Walk is one of the most popular USOD events

Did you know?

There are currently over 400,000 people living with Down Syndrome in the United States alone?

There are three different types of Down Syndrome, which is a full or partial copy of the 21st chromosome. These forms are nondisjunction, translocation, and mosaicism 

The life expectancy of someone with Downs has increased from the age of 25 in the 1980's all the way to 60 in today's world.