My girls are like night and day with their disabilities. K’s weaknesses are M’s strengths, and vice versa. So, despite the fact that 9 years ago I had a son that developed “normally”…it always surprises me when one of the girls does something developmentally sound. Yesterday was one of those days.
I was sitting on the couch while the girls played when K struggled her way up onto the couch, crawled up to me and pointed to my pajamas. “Kitty-cat.” I blinked and looked down in surprise, had she just said kitty-cat? So I repeated it and said, “Yes, that’s a kitty cat.” (they were all over my shirt). A few seconds later it was repeated, “Kitty-cat.” Yup, out of nowhere and with no previous prompting from me, she said kitty cat!!
I think she learned the word from her speech therapist, who has a puzzle with a cat in it. But to translate it from the puzzle (with a blue cat) to my shirt just amazed me!!
In other news both girl are walking around saying “NO WAY!!” It’s the most adorable thing right now…because they aren’t using it appropriately *lol* Give it time.
The only thing I can think is what my DH said. “The school took responsibility for the child.” If the school, and it’s teachers weren’t prepared for a special needs child, they should have said as much. A school shouldn’t attempt to integrate a child if they have no business doing so.
And the aide that charged an autistic child with criminal assault should be ashamed. I can’t even comprehend how the parents feel.
Every parent whose child has special needs worries about insurance for their children. We “have” health insurance…but my husband works for a small company…and because of “rising costs” and “bottom line” the insurance they offer…well, it SUCKS. We are required to take part now in their HSA insurance…there is no longer the 80/20 of standard insurance. We have the “Benefit” of a low-premium, high deductible insurance package. For a single man in his 20’s…this is a GREAT plan…you hardly ever get sick, what difference does it make?
For a family of five on a very limited income, with two children that require special services…this is a horrible plan. Our deductible is $6000. Considering one visit to a specialist costs anywhere from $500 to $900, how can a family on a limited income live with such a thing? So…we apply for medicaid to help cover medical costs…but since we have “qualifying insurance coverage” on the girls…even though our income meets their levels…we still can’t get medicaid. We’d have to drop our insurance coverage on them for 3 months before we could get coverage for the girls. They don’t qualify for an income waiver, and even if they did the wait list is ENORMOUS.
The nations insurance on all children needs to be re-examined. With these HSA’s becoming increasingly popular in even the larger companies children are losing even more health care because a parent has to decide if they can afford the doctor bill to take their child to a specialist, or for that MRI…or the $1200 genetic screen that will finally answer questions.
We have reached that terrifying point. The doctor’s are baffled…the therapists are baffled. We ALL know there’s an issue…but not one person can pinpoint what that issue is.
The issue is with K’s swallow. She chews GREAT. Her tongue lateralization is perfect. She goes to swallow and everything falls apart. You can see the struggle on her face to swallow. She blinks, winces, and sometimes even tears up. We reached the breaking point over the weekend.
Thursday I tried to feed the girls some PopTarts (they are an FTT parents dream – but that’s another post), as I have been for weeks. M was eating away happily. K was eating away happily, but then it all came tumbling down. K must have had a terrible swallow…because suddenly she was screaming top of her lungs. I turned my full attention to her and she’s spitting out a bite of PopTart. I try to comfort, and she refuses most of it. I try to offer her more PopTart, she screams again. We finally get settled and I try to offer her more PopTart. She takes a bite out of instinct, but the minute it hits her tongue the screaming starts again…like I’d poured acid on her tongue. She refused any further bite of it.
We switched to yogurt, and she was fine. Since then my nearly-18-month-old has been on BabyFood alone. We tried a nice soft cheese sandwich with her sister on Sunday and didn’t get halfway through before she was gagging and spitting it out. She just can’t eat solids anymore. We’re back on stage 3 babyfood diet. We’re using duocal to boost its worthiness and praying for answers.
As of this point the GI doesn’t know. Our speech therapist and occupational therapist are at a loss. The GI is scheduling us with the ST of the children’s hospital (since we’d had swallow studies done just within the past six months w/o any answers)…and hoping that we’ll get answers that way.
So…we’re now at a point where there’s no answers…and none too close in sight. It’s…an uncomfortable place to be.
With the experience I’m currently undergoing I wanted to give some free advice to those considering applying for SSI.
If you have one than more child to apply for…do them one at a time. Applying for two children at the same time (even if their conditions are totally separate) for some reason they get run…TOGETHER…which takes TWICE AS LONG.
I applied for SSI on my girls May 7th. In 90% of cases people hear a yes or no within about 90 days, 120 at the longest. It has now been over 4 months and our cases are STILL PENDING. We are on our last penny with me having been out of work taking care of them, and in danger of losing utitilities and/or our house…and SSI is taking their sweet time. They have sent the girls for every test possible, contacted our doctors and therapists insane amounts of times and still no decision has been made.
Last week we went for the “final” (we hope) evaluation, a speech evaluation, on the 120th day of our application period…at which point the Speech Therapist informed me she had ‘two weeks’ before she had to have her report in. TWO WEEKS! I’m wondering how to feed my kids…and she’s going to take her dear sweet time grading my daughter’s evaluations.
I should have done the one I KNEW could get coverage and waited on the elder. I am pulling my hair out.
So, yes…do them one at a time, or wait a month in between…you’ll wait LESS time that way…I guarantee it.
