by Sarah | Oct 3, 2007 | CF
An event that happened two months ago still bothers me today. And now that I have this blog, I want to bring it up again.
A common misconception/fear about K’s illness is that it’s contagious. I’ll say it now, Cystic Fibrosis is NOT contagious! It’s a genetic disorder. Two carriers have to come together to create one full CF baby. You can’t get it by casual transmission.
This still bothers me today. Because two months ago M had her speech therapy session at the park (the therapists idea). While she was playing with her ST, I took K around and let her play, etc. I put her in a baby swing and was swinging her gently. Another mom with a baby a bit younger, but quite a bit bigger than K got on the swing next to me.
We talked for 10-15 minutes, swinging our girls. It was a nice conversation. We laughed, we went through how we became SAHM’s, our “surprise” babies…it was nice. I was thinking that she was so nice, and we seemed to have a bit in common. Then she mentioned K’s small size, and we started talking about the special needs stuff. Just in passing, I didn’t want to make a big deal of it. But then I did it. I said, “Just diagnosed with Cystic Fibrosis.” Again…just in passing, not a big deal…but everything changed in that brief moment.
My son ran up and I turned my back for two seconds…by the time I turned around she was gone. No goodbye, she practically ran with her girl to their car, loaded her in and took off.
Yes, it could be a coincidence…but my heart tells me it wasn’t. I got disenheartened that day. I knew my girls faced physical obstacles…but that was the first time I came face to face with the emotional impact their disabilities would bring to them.
by Sarah | Sep 26, 2007 | Autism
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.
by Sarah | Sep 24, 2007 | Therapy
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
by Sarah | Sep 24, 2007 | Speech
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.
by Sarah | Sep 21, 2007 | Autism
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.
by Sarah | Sep 17, 2007 | Hypotonia
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.
