Redefining Perfect

Today is a day for looking on the bright side of things. It has been a very rough week for me in many aspects, so instead of a post specifically about autism or CF or any of my girls ‘problems’….I decided to focus on the good.

M is extremely intelligent. Her cognitive functions are off the charts. You can lay out ten wooden puzzles and give her one piece and she can put it in the proper space within thirty seconds.

K has a smile for everyone. She could be screaming and crying in discomfort during PT…and turn on a smile for her therapist in no time flat once the ‘work’ is over.

M has made leaps and bounds in her skills. She amazes us every day.

K’s language is developing so fast I can hardly keep up!

M’s first two days of preschool went so well, all my fears are relieved!!

K’s lungs have sounded perfect at her last two CF clinics.

M’s hair is growing in (finally) and she LOVES for me to put it up (I love to do it )

K has the funkiest dance moves ever.

That is it for now…I do have tons more…but I felt like being positive for a bit.

Coming this week, as I’ve focused so much on autism/PDD, I’ll be making some mention of Cystic Fibrosis and Hypotonia and how those have affected our lives.

I am happy to report that the charges against the six year old autistic boy have been dropped.

Charges Dropped

The school is, of course, refusing to comment in order to “protect the child’s privacy”. A bit too little.

The parents are thinking of civil action, and in this case I think I agree with them. As the public defender, Amanda Mullins said, “It’s not an issue of assault. It’s an issue of a school being unprepared to deal adequately with a child like that.”

Ain’t that the truth.

Seeing all the toys the therapists bring always makes me curious on appropriate play and toys for the girls. So, about once a week I go perusing websites that have sensory play based toys. Usually the equipment is crazy expensive, but sometimes you see some items within reasonable reach. I really go primarily for the ideas. Many common Sensory play items can be recreated. Some basic ideas I’ve come up with….

Tactile play is easy. Set out four bowls. Place four different textures in each. Rice, rotini pasta, sugar/salt, and (this can be messy) jelly. Four varying textures to explore. Rice or beans and rotini pasta are really great for opening the senses.

Get brushes of varying textures/bristle strength, and let your child explore those – but this is something to take slow.

Fabric has wonderful varieties of textures. Satin, wool, felt, cotton…all varying. Make a bin full of different fabrics and let your child explore each one.

Remember feet are as important. Let your child walk barefoot over different textures. Get washtubs and fill them with different outdoor textures…sand, pebbles (smooth is probably better here), mud, a patch of grass, a concrete block, smooth sanded wood. Let their feet get the sensations that their hands do.

Visit some sensory play sites, get some ideas there…you never know what ideas might come! I’ll be posting more ideas as I get them as well. For things from physical therapy to more sensory play, to oral motor play.

Some sensory play sites:
http://www.flaghouse.com/default.asp?Category=Sensory%20Solutions
http://www.beyondplay.com/index.htm
http://www.integrationscatalog.com/index.jsp

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.

I was directed to this story of a six-year-old boy with Autism that has been criminally charged with assault.

6-Year-Old Autistic Student Criminally Charged After Alleged Assault

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.