Monday, November 4, 2013

Disability DISappointment

Sebastian & I peeled, cored & sliced 10 large apples today. Willow added the sugar (what she now refers to candy as), cinnamon & water. This was all being thrown into the crock pot. It would be 4 hours before it was fully cooked. While the homemade applesauce was cooking I researched ideas on what you can do with apple slices. Apparently you can clean rust off of pots & pans by boiling apple slice in them? I didn’t do that one, but I did bake the slices in the oven for 2 hours. They were also covered in a cinnamon & sugar combination.
When the homemade apple sauce was done I was excited for the kids to try it! I knew they would LOVE it. And.. I was completely wrong. Lately they won’t eat anything I cook. Who doesn’t like homemade applesauce??! My anticipation, crushed. Sebastian & Willow did, however, like the baked apple slices. They came out tasting like sweet, apple chips!
Sebastian celebrated “Day of the Dead” at school today. His class finished the skulls they had each decorated on Halloween by taping a pencil to the bottom of them, turning them into masks. He brought home lots of skull artwork. He also made a paper skeleton with an accordion paper stomach. He came home with a skull on a small plate that looked to be made out of crystallized sugar. He had decorated it with icing, dyed pasta & hot fudge. Sebastian & Willow were both very bummed that they couldn’t eat it.
We learned today that we were found to be correct in our battle with the insurance company. There is a statute stating that Scott's type of insurance must help with Judah’s therapy. We provided them with a copy of this law. Starting in January our insurance will cover a very limited amount of therapy sessions a year, but it’s something. Scott seems to think we can’t ask them to do any more.  I’m more of a “it never hurts to try” person myself. We’ll see.
We had our disability appointment today. The only eligibility specialist currently working there has been there for 11 years. And she never stops talking. She was overflowing with information. I had to interrupt her every single time I had a question. It was extremely unfortunate for us that her mountain of information was not going to work in our favor, other than $200-$400/year to cover items that may be needed for health, safety, etc. Oh we get respite too! This is where a complete stranger that has offered to work for disability as a respite (no pay??) comes into your home where you then trust him/her in your home alone & give him/her complete responsibility of your child after having known your child for all of 4 minutes. This stranger is expected to keep your child safe. Respite will only baby-sit one kid. So the other 2 kids would go with us.  The eligibility specialist offered up this idea - we could have someone we know apply to do respite with them, get a criminal background check & then we would pick them to be our respite. Or hey, perhaps we could call them to come over & watch the kids?? Just a thought.
The disability appointment was informative & hugely disappointing. Oregon has the highest rate of diagnosed autistic children over any other state. The disability offered does not include therapy – because they don’t have the money. The developmental disability site clearly states that their family services include therapy. I made sure to bring that up. So basically there is a mountain of children in Oregon in need of substantial assistance. The rates of therapists & private schools are not reasonable by any means, they are extreme. Therapists in Portland who specialize in autism will cost you around $320 for 30 minutes to an hour.  The ones with waiting lists are all working out of hospitals, which is why their rates are so high. Finding an autism therapist outside of a hospital that is available to take patients has proven to be impossible for us. There are just too many kids that need help.
Judah seems to be doing better with the potty training. Once he is in the bathroom, he is fine & does well. Getting there is the struggle. Today he actually handed me the potty card & we went off to the bathroom! He's done this only once before. That is a clear step over the starting line.  I need to re-do his schedule in a linear view, something I learned at the meeting. I also learned that picture choices on a circle would be better, so he isn’t going from left to right & is instead seeing all of the choices more equally.
Willow continues to repeat everything. Still lots of repetitive “huh?” & “what’s that?” combined with pointing.

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