Tuesday, October 8, 2013

Unseen Possibilities

A note that goes with yesterday's entry: I got an email from my friend that I had mentioned who shut down the glucose & witnessed her son's speech come back. She filled me in on another phenomenal development that had taken place in her son's life. Four days after she removed dairy from his diet he began talking in paragraphs. Apparently dairy is very inflammatory & add to that her son's dairy intolerance and obviously something will change in him when you remove dairy from his diet. In the past I would have assumed that, in his situation, giving up the dairy would cause him to feel better & correct issues within his body. But it never would have occurred to me that it would help his brain function better, which is what happened. It's really interesting stuff!

The kids & I made a card for cousin Olive today. We hole punched & tied yarn & used photos & came up with something pretty awesome. When she opens the card three photos will fall out (one of each kid). With the help of our hole punching & yarn tying, these photos will hang from the card, one below the other with the name of each kid also hanging on the photo. This is essentially to tell her visually who the card is from (in a very awesome way). She will be turning two years old on Columbus Day.

I met Judah's school speech therapist today. Judah was absent the day she was there last month. She only comes once a month to do therapy. From what I gathered talking to her this morning, he has now lost that time. He has been absent twice, once because he was very sick, which of course he can't help. The other time he was absent was when he was doing testing at OHSU, which relates COMPLETELY to his school. We are not told what day she will be there. How could we have POSSIBLY stopped this from happening? The amount of time he gets for speech therapy at school is 20 minutes a month. This is the maximum amount of time he can get, even if we added 7 different issues, he would still be at the max. So that's helpful. Obviously EVERYONE should be at the max, because the max is 5 minutes a week!! She pointed out that she is in the classroom the entire day when she is doing speech therapy with each child, so she is able to continue to observe him for a full day, one day out of the month. Again, super-duper helpful. The therapy he gets from WESD is such a joke. I think his occupational therapy is even less time, because they felt at his last meeting that he didn't need it much. ??! At his first meeting it was decided that he didn't need OT at ALL. ??! Yesterday I received books from my dad (a social worker) on how to prepare for these meetings & how to get the best result for your kid. I can't say though that I am very hopeful WESD will do anything more for him, but maybe get an extra 5 minutes a month of OT added to his file. I hope he doesn't have to go to the bathroom during his therapy time - he'll miss the whole thi

So that leads us to looking at private therapies. Obviously he really needs a private school as well. Without insurance I don't know how anyone would be able to afford the ABA therapy, which is working with a therapist 20-40 hours a week. Right now he has speech once a week for 45 minutes & music therapy once a week for 30 minutes. Add to that his class time at WESD which is 2 days a week for 2 hours & 45 minutes a day. They won't give us 3 days because they say he is making "progress". The fact that he is the most delayed child in his class doesn't matter. All of his therapies & school time are all helpful, but can you imagine the possibility of progress he would have if trained professionals were working with him on a Mon-Fri basis? Talk about feeling defeated & frustrated. Our child NEEDS this help. Insurance companies are so corrupt. This is the most my life has ever been affected by an insurance company, and it's not just me it's affecting, it's our entire family & everyone that cares about our son. We are doing all that we know we can, but there isn't a day that goes by that I'm not desperately researching for just one more possibility of hope.

1 hr 15, 5 1/2

 

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