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Friday, April 23, 2010

Journeys in Speech

Tuesday I went and registered Gabriella at our local elementary school with hopes of getting in-home services for both therapy and schooling. I am planning on homeschooling her for Kindergarten anyways, since she won't be able to start when all the kids do in July or attend a public school setting for a while. She qualifies and things look great, but everything is was put on a sort of "hold" until we get back from transplant....

I go to my PO Box to grab the mail, to find another denial from the Department of Developmental Disabilities. We have been trying to get her accepted through them to get her an Augmentative Communication Device and also for some possible additional therapy support. This ACD is a little computer that will allow Gabriella to choose different symbols to formulate a sentence and will speak it for her. Not only will it help her to express what she is trying to say to people who don't get her special way of talking, but it will also assist her in learning to speak again in the proper way by speaking the words she is trying to communicating and her mimicking them. We are continuously denied because they do not consider loss of speech/ apraxia &aphasia, a developmental issue. According to them, she it would be an issue if she had never been able to speak... makes sense, right? Not. They took the blurp from her Speech Eval that she was behaving age appropriate as a marker that she was comparable to her peers. The feelings I felt when I got the repeat denial are not rated for this blog... so I'll just leave you to your imagination.

I got my wheels moving right away and contacted the hag who denied us to let her know what I thought of her and her desk job, gathered my appeals information, made an appointment with her rehabilitation doctor, and researched angles to help me fight.

Today we went to see the Rehab doctor. Thank goodness we got in so quickly. Like myself, he was pretty much disgusted that they would not approve Gabriella. He got me the name and number of an organization that should be able to help us get evaluated for the device, but also is writing his appointment notes to be worded in a way that the state will approve her. It is all in how they word things. The doctor stated exactly what I've been saying..... that Gabriella is most definitely not at the level of other kids her age. Yes, she is doing AMAZING and compared to 7 months ago, she is a true miracle in her recovery. But stand her next to another 5 year old and there is no need for a professional to tell you that she is now extremely delayed. And there is no way to tell is she is on track for her alphabet, reading and writing because she cannot communicate... as far as we know she doesn't know any of that and is learning it right now like it is the first time. Also, no one knows how this will affect her long term. Many times, people with a brain injury like hers have difficulty reading and writing. How can someone self-suffice if they cannot communicate, read or write? Thats not a disability? Basically, what the state wants is for you to get to the point of no return before they help, instead of assisting in the real-time treatment of a child. That, I'm not satisfied with.

He also told me to peruse the school system and their evaluations now. It seems as if they cannot deny her the treatment, so I am going to push to get it all started. There is a chance too that they may be able to supply her with a device through the school system, given there haven't been major cutbacks to that area of the district.

So we have a few options now. I have a doctor in my corner to advocate for Gabriella, and have an organization I can contact for help or at least tips on fighting for this... as well as the school system I am going to push on.

Besides the business part of our appointment, the doctor was impressed with Gabriella. He discovered something with her arm... and I wish I could remember what he called it right now, but basically that her muscles and nerves are contradicting themselves. When her muscle contracts to make a movement or a fine motor skill, she has something prohibiting that motion from being carried out properly. He prescribed me a medication that should help with relaxing this action to help her retrain her hand to work properly, without affecting her heart or ability to undergo surgery. I am in complete awe of his ability to diagnose this (I didn't know there was anything to even diagnose!), and it sounds like it might be something we can improve on! And he also said there is a slight chance it might help her speech by relaxing her mouth nerves/muscle contradiction from holding back the sounds her mouth is trying to make. Once I get his notes and see what it was exactly, I will repost because it was seriously fascinating, and it sounds very vague as I type this here. Next step is I have to call Loma Linda and see if they will approve her to take this medication... but I am really wanting to give it a try!

Like I told my mother in law today, I'll fight for this little girl until the day I die.


The Simmons Family said...

Gabriella is lucky to have such an amazing advocate in her mommy!! You are so much like myself... FIGHTING to the end!! I will do anything I can to make sure Owen gets the services and treatments he deserves.

What great news about the medication that could help with the muscle relaxation. Wouldn't that be great!?

Also... you will be approved for DDD. I fought and fought and cried and fought some more. The day we got the approval letter I got a call from the DDD intake coordinator (the aweful one that continually denied him) to say "congratulations!" Then she had to come out to the house and meet Owen to do his eval. She didn't apologize, I didn't expect her to, but I know that she saw that she was wrong.

Good Luck with everything!!!

Dahlia said...

I've been doing some PT for a while now, and one device my therapist just introdu
ced to me might be something to look into for G. It's some sort of electronic device (can't think of what it's called - but it's similar to a TENS device). Basically you put these electrodes on specific muscles and it helps them contract. For example it made my hand move without me trying to move it. It's used to help with muscles that are not coordinating correctly and such. Just something else for you to look into, but what you wrote about her arm made me think of it.

And I think it's rediculous she got denied. I wish you guys were in PA only because I know they are fabulous with early intervention type things.

Heather said...

I just found your blog via the Apraxia hashtag on twitter. My youngest son has speech Apraxia, and we're trying to get a augmentive communication device eval done now.

I'm gonna follow your blog if you don't mind :) Always like meeting other "special needs" moms.

Anonymous said...

Ugh Kristi! I couldn’t imagine! Gabriella, you are so inspiring to me! I couldn't do what you are doing! I love to tell people what is on my mind. If I couldn't do that anymore because a stroke that my heart caused! I wouldn't even try to talk again. You are such an awesome little girl and thank you for letting your mommy tell everyone about your story! I wake up and think about you and Mason and pray for you guys all through out the day! God will heal your speech and your heart! :D Just wait for His PERFECT timing!
Angie's support team