Wow, it's been a while!!! All I can say is September is definately a month to remember:) It was such a great month, sad to see it end. Kolton and I both have made big steps this month. To start off, the 2nd weekend of September, we attended our first Fragile X support/family outing. We drove up to Dallas for the weekend and were able to meet some great families with Fragile X kids of all ages!! We met some new friends, Christy and Cale. They are newly diagnosed as well, and it was nice for me to get to share my feelings and suggestions with Christy. We both know exactly how each other feels. I wish we lived closer!!
I had such an amazing time- seeing the kids and for the first time I felt like Kolton really fit in! No one cared if he threw his blocks, flapped his arms, or chewed his hand. He was one of them. He was accepted the way he is. In that one day, I was in his world. I did not have to worry or think about what others were thinking. What he was doing/ acting was the normal. I felt like a weight had been lifted off my shoulders. Today I still feel like that. I don't care what anyone thinks- I know that I love him for exactly what he is, and somewhere in this world he belongs, he fits in. Kolton will always fit in with me:)
The middle of September, Kolton's previous OT therapist, Shannon returned to Brighton (school Kolton receives therapy services from). This was like Christmas for me!!! Oh what a gift, to have Shannon back:) He loves her, and by her second visit, their relationship was back to were it had been!! I cannot wait to see the progress he makes with Shannon. Speaking of progress- he has made TONS. I don't even know where to start!!! He LOVES to play "BEANS". Yes, beans!!! This is a sensory play and the first time he was introduced to beans, he crawled away and would not come within 3 feet of the tupperware of beans. Now he will dig, pour, and dump the beans everywhere. So exciting!!! Except I am finding beans everywhere. I changed his diaper this morning and found a bean:) Sent a bag to my mom's this morning, and she found a bean!! Was at the store the other day and found a bean in my purse when I pulled out my wallet!! Beans are an instant smile for me, I can't help but think of Kolton (and all he has accomplished). When I walk pass the bean aisle in the grocery store - I smile:) Thanks Kolty:)
Kolton also has the "IN" concept down and actually helped Kaylee pick up her toys. He put "IN" two of her pet shops in her toy box!!!! Go Kolty!!!
In September, Kolton also started music therapy. I was skeptical at first, especially when I listened to the music!!! But he seems to really enjoy it and I have seen a difference in his behavior since we started so I now believe it works!!! The music is very strange and made of strange noises (such as dolphin shrieking sounds) not very appealing to the everyday person. However, to Kolton, the music helps him be more aware of his body, his surroundings and gives him a lot of input. It has been compared to riding a roller coaster. The feeling we get from riding a roller coaster, Kolton gets from listening to strange music!!! Oh, how I wish I could slip into his mind- I would love to see whats going on in there!!! I know it is something amazing- and I am missing out!!
Earlier this year, around April, Kolton started using Sure Step orthotic ankle braces to help him walk. Well the little monkey, outgrew them in no time and has now received new and improved orthotics in a cool camo print!! Kolton has such low muscle tone, he has a hard time standing. Low muscle tone also causes loose tendons and makes Kolton stand on his ankles!! His feet turn in so much he is literally walking on his inside ankle. Ouch!!! With his Sure Steps, he was so strong he was turning them in as well, so his new orthotics are a little taller. The right one goes up to the bottom of his knee and the left just above his ankle. The right one is also a "double" orthotic, a smaller one the fits into the larger/taller one. Kolton's right foot is worse than his left, the reason for the extra support. These will in time, train Kolton to keep his foot in the correct position and not roll them over. We are walking every chance we get. I am secretly hoping he can make a grand entrance at his birthday party, but if not, his walker received a super cool makeover with racing flames and a custom flame name plate!!! So cool:)
September was filled with lots of New Beginnings. New friendships, new starts and new accomplishments. Kolton and I are both growing everyday. I am learning more about myself than I ever have. I am actually amazed at all I can do!! I am no longer wandering in the dark, but slowly finding my path through the tunnel and towards the light. Somedays the light is still dim, but I would take the dim over dark any day!! Fragile X is no longer my every thought. I am doing things, going places, and actually having friends!! Wonderful friends that totally accept and love Kolty for who he is. I realize that the people I love and that love us will accept Kolty for himself, if not they lose- not me. Kolton is amazing and he shows me a miracle everyday.
September in Texas started with rain- something we haven't seen almost all year. I have to say that rain is a misconception. Most would agree that rain brings on gloomy days and sad thoughts. But I would have to disagree. My September has been the best month I have had in about a year. Our trip to Dallas, was very wet. It didn't just rain, it poured, heck it flooded. But I saw it in a different aspect. What happens after it rains? Everything grows. God gave me the rain, to help me grow. Whether its tears or rain drops falling, I say let it pour, cause after every rain storm is a rainbow. Kolton is mine.
Kolty,
Let's grow together.
Love,
Mama
Seriously...I'm crying right now. I mean, you just said everything I have wanted to say. And the part about being in "his" world at the FX function, so true. I laughed when you said he could throw his blocks and hand flap and no one cared!! LOL! I thought of Kolton throwing those blocks around and just having a ball! Yay for the new ankle supports!! Can't wait to see all the improving he will continue to be doing and hopefully walking at his birthday party. Go Kolton!
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