You know it's been a long blogging break when you try to leave a comment on someone's blog and have to give up after 9 incorrect password notices. There has been a lot of stuff going on in our world. Where do I start?
After 4 years in Phoenix we finally bought a home. We were in the process of buying a 2-story home and got cold feet as it was being constructed. It had a huge loft with a low railing and honestly, we just don't know if/when Brady will understand the danger of heights or figure out how to go down stairs safely. Instead we moved into this one story. With a pool. Danger lurks everywhere, people.
Brady started kindergarten and it hasn't been an easy transition. We have questioned our decision about which type of classroom he should attend and still, there is just no really great fit for him. It's incredibly frustrating and this issue has been overwhelming us since the first day of school. We will again visit all possible classrooms in the district and make a decision. Other parents be forewarned... the district just may change every single teacher/classroom/program two weeks before school starts and therefore those 7 classroom visits/possibilities you agonized over last spring will be for naught. We did win our fight for a one-on-one aide for Brady which is a positive. Observing him in his current classroom (8 kids/3 adults), we now realize there is no possible way he would be kept safe and have his unique communication needs met without an aide. Fight, fight, fight for what you need and deserve. Troy can give you some pointers. He made some ladies cry in our IEP meeting because he presented such an emotional case for Brady. That, and a log of all of Brady's classroom falls and injuries over the past two years didn't hurt... aside from our kid coming home from school with a black eye more than once. Oh, the irony.
Brady has had more seizures, including two back-to-back totaling almost 20 minutes and resulting in his first ambulance ride. The episodes seem to be evolving into a different type of seizure which is less intense. One time he was conscious throughout and trying to eat french fries. Thankfully the seizures still occur infrequently, although it has been tough emotionally to come to terms with the fact he is not likely to outgrow his epilepsy. We may be adding an additional medication soon as he is on the maximum dosage of Keppra. I now carry a diaper bag on me at all times with a blanket, rescue medication and if anyone can find me an attractive women's watch with a stop watch let me know!
And for better news... Brady has had a recent burst of communication. No talking. I have fully accepted that verbal speech will not likely be a possibility for Brady. I will never limit him or lose faith in his abilities and determination. And I still wake up from dreams where he talks to me. It's never anything of the melodramatic "I love you, Mom" variety but more random conversations wherein he asks me to "pass the syrup" or something. And in my dream it's not really a big deal. And some things happened in the last few days which made me realize it just doesn't matter if he speaks verbally.
We were playing catch (yes, he can catch a ball - amazing, right?) the other day and when I told him I was all done he signed "more" + "ball"+"mom." He has never strung signs together as a sentence. He loves catch so much he would stop at nothing to tell me he wanted more. I am learning it is all a matter of motivation for him. He also signs "more" + "water" when I turn the water off in his bath. With his talker he is telling me what he wants for all meals and I have been known to drop everything and run to the gas station on the corner to buy Pop-Tarts or donuts to positively reinforce his use of the talker. Healthy? No. Effective? Absolutely. Last weekend he used his talker TWICE to tell me he needed to go to the bathroom. It was the BEST.DAY.EVER.
Through all of the recent changes in his life (moving, new summer program, new school, massive medication increase) Brady starts every day with a big smile on his face and a hug for Mom. He brings so much joy to my life it doesn't seem fair. His smile makes every heartache over his classroom situation or seizures disappear every morning.
Oh, and he loves watching football now. Will sign "touchdown" and announce it with his talker. Dad is understandably ecstatic.
Wow! You guys have been busy! So sorry to hear about Brady's seizures and school issues. I hope everything works out in the end. Always thinking of you guys and hopefully we can get together soon. We need too!
So much going on! Congratulations on your new place and your new little football fan. I hope Brady's health continues to improve. Call us if you get up our way during the holidays. We'd love to hang out!
Man, you have been busy!
Not sure a pool is safer than stairs!!! BUT congrats on your new home!
Yea for Brady 'speaking'! Any form of communication is great right? As long as we are understanding each other.
I'm so glad to see an update! I'm so glad you two have Brady, and that he has you. You are all right where you need to be, and I love that a simple smile every morning is reminder of that.
You guys are great!
Oh it's good to hear that someone else battles with the school system too. I wish it was easier for us parents but you are right we have to fight, fight, fight. i guess it's good cause we can get out all that frustration out. lol We finally got Taylor's communicator too and she is starting to use it sometimes too. I see what you meant about it being a "heavy toy for them". But so glad to have it. Don't give up on the verbal, Taylor has recently started just saying a word hear or there. I am glad to see that Brady watches the t.v. that close too, it's not just Taylor. Does he like the sound high too? It amazes me how much alike they all are.
Hey I just noticed that under Taylor's name on your list it goes to our private family blog instead of her personal 1p36 blog. You might want to change that. Thanks Jenny
Catching up on our blog reading...very excited to hear about Brady's signing and success with communication. Hopefully lily will do the same someday! The Friedmans
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