Tuesday, April 28, 2015

Staying Strong

Last night I cried. I cried a lot. I cried because I had to get it all out of my system so that I could be strong today. You see, today is a day I had hoped would never come. I had hopes that Alex would be walking by now. The reality is that he isn’t and that is ok, but in order to help him feel like his peers at school when he goes to Kindergarten in the fall we need to get him a wheelchair. Yes, a wheelchair. Now you know why I cried.

It is a hard pill to swallow when you have to come to terms with getting a wheelchair for your child. It is no easy fete and all I can do is remain strong for my little boy. I have to be strong, positive and encouraging while he is going through this so he knows that there is nothing wrong about being in a wheelchair, that he should not be ashamed and to tell him how great he looks. Inside I will be crumbling into little pieces.

Part of me feels defeated. Like this is the end, but it's not because I am not going to allow it. The wheelchair is to simply be used for Alex to sit at the table with his classmates, to be transported down to the cafeteria so he can eat with his friends and sit next to them in Art class and Music Class. Nothing else is going to change. He will still sit on the floor, he will still go on the swings and he will still roll around the floor. I will make sure that the wheelchair will not be used as an out. I need him to be as mobile as possible so he continues to build his strength so he can hopefully walk someday.

Just this morning as I was in the waiting room at therapy, in walks a little boy maybe 3 years old. He walked in using his walker and I couldn’t help but smile immediately. He walked right up to the play kitchen that was next to me and he stood and played alongside of his two brothers. After a few minutes he fell down. His Mom said “Fix yourself, come on you can do it”. She made the other children move so that he had room. He was on his back and he rolled over, got to his knees, pushed up onto all fours and crawled over to his walker where he pulled himself up to the walker. I stared at him as he did this because there was something about him that reminded me of Alex. It was as if this glimmer of hope was restored back inside of me as I watched this beautiful little boy do something so amazing in my eyes. It was like I could see Alex doing it as he was. I am really glad that I got to see that today. It made my heart smile. It gave me hope and the strength to believe that everything is going to be ok.

I am human and I can only handle so much. Seeing my child struggle with certain things and to be on a completely different level than his peers is hard. But in the end, he is who he is and he is amazing and wonderful and I wouldn’t trade him for anything. I feel like that is hard for some people to understand. Why wouldn't I want my child to be "normal"? In this crazy world we live in, I am not sure what "normal" is. But I have a great kid who is happy and lovable and has changed my life so who would want to trade that?

Thursday, April 23, 2015

Alex: Strong, Determined, Happy

I want to make sure that Alex's post of accomplishments isn't all about what he has done in therapy this past year. Although it is always worth mentioning I want everyone to know how far Alex has come in school this year. It has really blown me away.

When Alex entered the Early on program when he was just under a year old at Brandon Schools, I wanted more than anything for him to be in a classroom with the General Education population and not to be in a Special Needs only class. The first program that we were in for a few months was special needs only and it was a great place to start to get Alex more comfortable with kids his own age etc. Within six months or so, he was moved into a preschool class that was mixed with both gen ed and special ed kids. His first full year of preschool was the same and now he is in Pre-K and although there are some children in the class with minimal needs such as speech, Alex is the only non-verbal, non-mobile child in the class. This year, has changed not only his life, but mine as well.

I was really worried when he started school that the kids wouldn't be accepting. Other than Evan, this was a whole new class of kids that he didn't know. Of course the kids were hesitant at first and had lots of questions but not long after that first week, they began warming up to him. Fast forward seven months and he one of the most popular kids not only in his class but the whole school.

All of the kids in the class are great, but there are a handful that really go out of their way to play with Alex, read to Alex and include him in activities in the class. These are 4 and 5 year olds that do this on their own with no encouragement from the adults in the class. These are friends. True friends.

In his class this year, the teachers created a communication book for Alex to use for choices. In the book are pictures of his favorite toys, areas of the room and other responses such as "more" and "all done". We also have a book at home that we use that has been quite handy in making Alex feel just a little independent. He is very aware of his surroundings, he remembers a lot of people he meets and interacts with on a daily and weekly basis. He also has a couple of basic communication devices he uses and is getting very good at using the iPad for certain activities.

He also follows simple commands very well and enjoys music. At school while doing "Happy and You Know it" with body parts Alex touched his head and ear in response to the song. He also got overly excited to another song they sing and dance to called "Rocketship Run" when the countdown began to the blast off, he was really happy to be lifted into the air while the other kids jumped. When he is asked to put magna tiles in a bin, he does so one by one. He has learned the colors blue and red just recently and will make marks in a journal with a crayon and finger paint without eating it! During work time, he played with pop tubes with a friend. He actually pulled on it while his friend held the other end. He moves around quite well in his gait trainer while he is in the gym with his friends and enjoys the swing and the spinner outside on the playground. Finally, he is learning to raise his arm/hand to say hi and bye. I am sure there is a lot more that I am missing, but this paragraph above just blows me away.

Being in a General Ed classroom with kids his own age who are there to be his friend and to help him has made a world of difference. I feel like being in their presence has helped him get to where he is today. (Along with the amazing teachers and staff that help him) That interaction has helped him grow so much.

As for his physical accomplishments, he has gotten stronger in his core area. He can sit for longer periods of time to play with toys, watch a show or listen to a story. He does an amazing job in his gait trainer at school with walking and is doing very well in therapy with tall kneeling, sitting and four point. He has been riding his adaptive bike on nice days here at home and we have even taken it to the park a couple of times. He can pedal on his own to some extent but still needs help steering. Finally, he is still horseback riding once a week at Banbury Cross and loving it! He still has side walkers, but holds on with two hands and supports himself for the most part now.

His muscles have gotten tighter in the last year and he just received another round of Botox in his legs. Although it has helped somewhat, his tightness is in more than one area, so we are now being told that medication may be our next step. We go to the Doctor in two weeks to discuss that.

Alex's strength and perseverance is undeniable.

Watching him work so hard these past 4 years hasn't been easy at times, but to see where he started to where he is now makes me so proud of him. It makes me want to keep pushing him, believing in him and never wanting to give up.

When I asked Evan about his favorite things, I then asked him to tell me what he thought Alex's answers would be. Here is what he said.

Favorite Color - Green
Favorite Food - Pizza
Favorite TV Show - Mickey Mouse
Favorite Movie - Despicable Me 1 & 2
Favorite Outdoor Activity - Swinging
Favorite Animal - Dog
Favorite Restaurant - McDonalds
Favorite Book - Wocket in my Pocket
What do you think Alex will be when he grows up? A Policeman
Best Buddies - Maddison, Samantha and Sapphire
Favorite thing to do with Evan - Ride Bikes
Favorite thing to do with Daddy - Read Books
Favorite thing to do with Mommy - Play Puzzles

10 Months

4 years, 8 months

Wednesday, April 22, 2015

Evan: Smart, Creative, Lovable

Usually once a year I like to do an individual post on each of the boys just to jot down what is going on with them and to acknowledge their accomplishments. It has actually been close to a year since I have written about Evan and Evan alone.

The first thing I am going to say is that he is quite a character. He is very goofy (like his Dad) playful, he is a lover and a fighter and in the past few months we have discovered just how smart he really is. He has a phenomenal memory and loves to build, design and create things.

When Evan started preschool back in September 2013, I enrolled him in speech therapy because he only had a handful of words. He slowly progressed with his vocabulary throughout that year and by the end of the school year he was speaking fairly well. He continued with speech this year and when his IEP was up in February he was dismissed because he had come so far and we no longer had any concerns.

As his Pre-K year is winding down, the teachers are doing assessments on the kids to make sure they are ready to head off to Kindergarten in the fall. Because my boys have a summer birthday, they will be a young 5 in the fall and I wasn't sure if they would be ready to go or if I should hold them until they are 6. In January, Evan's teacher Mrs. Schorr did a letter/number assessment on him and he did really well. He knew all of his letters and numbers and almost all of the letter sounds. She seemed pretty impressed. Just last week, she ran another one with conferences coming up next week and apparently he blew her away. He can count well past 100, but what was shocking is that he can write many numbers 1-100 and can recognize them all on paper. Then, one morning last week Evan had left a piece of paper with a bunch of numbers written on it on my dresser. As I looked closer, I noticed that he had written in multiples of 10 all the way to 100! I couldn't believe it! I was so impressed and even shared it with his teacher.

He loves to read books, some he can read from memory. He is into building his train tracks, playing with cars and painting. He also loves to write letters and numbers with his markers, play games and build puzzles. He got a new bike for Easter, so on the nice days he has been out riding around. He loves to dig holes, build bridges with pieces of wood and play with water in the back yard. We go to the park as much as we can and he still loves going to the mall.

There is a lot of good that has come out of Evan this past year but that doesn't mean that he hasn't been a challenge. Eric and I have been battling with him for awhile now with talking back and arguing with us. He won't listen and always puts up a fight. It can be exhausting. What is ironic about it, is that he only does it with Eric and I. He won't act like that at school or with anyone who watches him. It is very frustrating, but I guess that is all part of being a parent. Just this morning, he decided to cut his hair before school. He was up before the rest of us, climbed on the counter, got the scissors and cut his hair. He used Eric's hair gel to put the finishing touches on it. Thank goodness there are no bald spots. Just a thin area that will grow back.

It is hard for me to wrap my head around the fact that he is going to be 5 in less than three months and will be going off to Kindergarten in the fall. It seems like yesterday I was taking care of a little infant, watching him crawl and eventually taking his first steps. Those days are gone, and I now have a little boy who loves the outdoors, getting dirty and just being a boy. I am so proud of all of his accomplishments and am looking forward to these next few years. I wish time would slow down a bit though.

Here are a series of questions I asked Evan just to see what his answers would be. I can't wait to followup on these when he is in Kindergarten to see how they compare.

Favorite Color: Blue and Red
Favorite Food: Taco
Favorite TV Show: 7D, Jake and the Neverland Pirates
Favorite Movie: Despicable Me 1 & 2

Favorite Outdoor Activity: Playing with Dirt and Water
Favorite Restaurant: On the Border (He calls it the Purple Store)
Favorite Book: Scooby Doo, Dinosaur Dig
Favorite Animal: Horse
Best Buddies: Brayden & Joshua
What do you want to be when you grow up? A Bus Driver
Favorite thing to do with Alex: Draw/Crafts
Favorite thing to do with Daddy: Play Chutes and Ladders
Favorite thing to do with Mommy: Play Chutes and Ladders

10 Months
4 years 9 months

Tuesday, April 21, 2015

Sailor Edward Adair

Meet my new Nephew!

Sailor Edward Adair
April 17, 2015
9:28 AM
6lb 7oz

Sailor was born to Kristy and Patrick last Friday.
We finally got to meet him on Sunday before he came home.
Alex and Evan were a little shy at first but then warmed up to him.

So, small; so precious; so cute.

Welcome to the family little man.
We love you!

Congratulations Kristy and Patrick!!