by Sarah | Oct 8, 2007 | Autism
One of the hardest adjustments I’ve had to make is the preparation for change. Being that M is only two and a half, explaining to her upcoming changes isn’t so easy. And they are sometimes unexpected. So, instead of preparing her right now, I have to prepare myself.
This weekend we got ‘new’ furniture. From my parents we got a three-piece entertainment center. It’s not a huge change, we had an entertainment center…so we just swapped out the middle piece…but then the two side pieces were put into the room as well. One of them replaced a toy chest/diaper cabinet of hers.
Yesterday in reaction, M had a bad day. Slept a lot, when she woke up was crabby for some time. She came out of it alright in the end…but I was ill-prepared for the adjustment. Wasn’t even thinking about it, really, until it happened.
Note to self…from now on, prepare for change. And as soon as M is old enough…prepare HER for change!
by Sarah | Oct 7, 2007 | CF
What is Cystic Fibrosis? The technical definition, according to the CFF website is as follows:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
But what is it to a parent?
When we got the diagnosis we got the cold rush of fear to our belly that no amount of “It’s not a death sentence” and “many people with CF live into their 40’s” could settle. Our pulmonologist is incredible. She’s one of the best in the country, and it’s so reassuring. We have a whole team on our side, and right now K’s lung functions are so good, and she sounds so clear compared to six months ago…
But no amount of clear and happy checkups remove that fear. It’s always in my belly. I can push it aside most days, but there are times that I look into her bright and happy big eyes and I wonder how long she truly has. How I’m so thrilled that she’s such a happy child, because I know she’ll enjoy her life for as long as she lives it.
You hold out hope for a cure, for your child to live longer than you…but in the back of your mind you hear the stories of the 9 year old that lost her fight…or your coworker’s wife is in the ICU…her youngest child only 2…and she can’t even go home and play with her. They each worry you.
The goal is to not let it rule your life…becuase you will never lose the fear of outliving your own child…EVER.
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.
