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Discussion in 'Pictures & Stories of My Chickens' started by Blooie, Nov 3, 2014.
What a coincidence! I just answered it!
THANK YOU Cynthia and Blooie for the welcomes!
Yes, I've met other families with special needs kids, not quite the same as my daughter's, but similar. I focus on the good...like I feel so lucky that she has never needed surgery - for anything. I feel lucky that we are able to control her seizures with just ONE medication. I feel lucky that we found sign language when we did.
I volunteer with an organization that builds handicap accessible playgrounds (Shane's Inspriation). Through the events they put on, and the programs they have in place I have met MANY, many families. I learned that has bad as things might be in my house, there is ALWAYS somebody that has it worse.
I can't imagine having to schedule surgeries! It's bad enough scheduling MRI's and EEGs.
Here is a video that Shane's put together last year. My daughter and I are in here - I am the one that HATES public speaking or being videoed (and you can tell), she is the quiet little girl sitting next to me signing swing, and slide.
Testing of my daughter has been horrible over the years. I loved one year when they had a stranger, that did NOT know any sign language take her out of her class room and test her. She probably signed all her answers, but they said she didn't cooperate, and they couldn't test her. She has had some great teachers. He is in public school in a special class. They have the same teacher for 1 - 3, 4 - 6 , 7 - 8, and 9 - 12. Then she can stay in that program until she is 21. She "tests" around a 4 - 6 year old. From some of the things they tested her on this last time, I know she can do, she just didn't want to do them that day.
Another thing we found was she has a chromosome disorder. They first thought that might have caused her issue, until they found out I have the same one, and my father also has the same. But I found a great resource for Chromosomes at Unique - http://www.rarechromo.org/ They are based out of the UK, but have a lot of members here in the states.
I'm slowing reading through all the posts, I am so happy I found this thread!!!
Jessi! Love that video! What a wonderful thing they are doing..and I say, you are a great speaker!
I used to help a lot with the spina bifida things. I talked at programs. We were on t.v. once while Richard was in for surgery. I've gotten him in the newspapers during the months of Oct... spina bifida month. I've arranged a big get together for surrounding counties at a park in Utah County. Food and games! Was fun. He was the poster child in Salt Lake City one yr. I guess I kept pretty busy trying to get the awareness out. Back in the 80's, no one knew it was the number one birth defect at the time. 1 happening every hr. One in a thousand. Thankfully, the word is out now, and we know more about spina bifida. They still say they don't know for sure, but have seen it more with this use of medication, or this lack of folic acid, and I was also told that the genetic thing could be part of it. I know of a couple of friends..that I made through the yrs..that had two children with spina bifida.
Good for you getting involved! These special needs kids need all the help and attention they can get.
After a night and half a day alternating between crying and being so mad I wanted to hit someone until they felt as bad as I do, guess where I ended up? Right where I was yesterday morning - looking forward to her being home - getting into the cabinets, calling me a "bowl" (don't ask) and giggling at things I see every day and barely notice anymore. Yep...exactly nowhere different. And that's a mighty doggone good feeling, let me tell you!!
We did get some good news in today's summarizing appointment. First, they were stunned at the difference in the spinal x-rays from 8 months ago to now. Because she's walking more, bearing weight, and staying more upright for most of the time, her scoliosis is correcting itself. In fact, they said that the curve was now so negligible they can't really even call it scoliosis anymore, although they will continue to monitor it closely.
They also were happy with the fact that her hips are beginning to stabilize and that the twisting in her shin bones is beginning to straighten. Her shins have been so torqued since she was born that this was really good news! They are far from normal, but they are better than they've ever been, and we'll take that! Again, it's all the weight bearing she does now that is making the difference.
Her kidneys, bladder, ureters, bowels and colon are still sound and healthy, so they have given the go-ahead for her MACE procedure. They are looking to schedule it for either late June or mid-July, and will be finalizing the dates and times as soon as we can coordinate our timing with theirs. Since Jenny and I will have to stay in Denver for about 3 weeks after the surgery, we have a lot to juggle
I have a couple of other places to post this, too, so forgive me for copy and pasting to other threads. Not something I normally do, but this little doll has so many people pulling for her that I don't want to leave anyone out who may be wondering. And thanks for everything. I'm sorry I got so down - I'm usually the most upbeat person but this just knocked the wind right out of me - out of all of us, for that matter.
I'll stop back in a little while and catch up and watch the video! You guys are all awesome!
So some great news for you and yours Blooie! I am really interested in this upcoming surgery. Will be watching for sure!
Wow, that is wonderful news Blooie!! I have had rough days. You were nothing but kind in your posts!! I'm glad things turned out so positive
Cynthia, thank you so much. You are amazing!!! You are doing a great job of keeping tbings in the news, and not allowing things to be forgotten!!
This organization doesn't do anything that benefits me directly (we are in different cities/counties). But they teach tolerance. They go into schools without special needs programs, and talk to the kids about seeing a kid in a wheelchair. Would the ever go talk to them? The point out how LONELY most of those kids are. They bus them to a play date and pair them up with the kids. They go back a week later and talk about the different opinion they now had.
It has made a huge difference. We notice fewer kids picking on our special kids.
Blooie, I hope that you get everything scheduled and all you juggling works out!!
This is a great video. We were blessed that Richard was treated so well also. I should get photos of him in the newspaper, where the kids are playing ball with him. (they let him cheat a bit with the running when he was using crutches.)
"She is unique, and the love of my life! She has made me look at life differently. I am a happier person."
That's how I feel about Katie! I mean, all my kids are the love of my life, and becoming a mom in general made me look at life differently, but ... Katie made me not care about keeping up with the Jones', or worrying so much about if my house was presentable if someone randomly stopped by, or dusting. I just don't care! It's not important what everyone else thinks. Life is about sooo much more than that! Welcome Jessimom!
Blooie, I'm glad you got some good news. You know what? If they put my Katie in that room with a bowl of ice cream and no spoon she would not hesitate. She would maybe ask if it was for her. Then she'd dig in with her bare hands! My "neurotypical" kid would ask for a spoon. I HATE behavioral tests. It all depends on the day and time and what the kid had for breakfast and how bright the room is or soft the chair is or if the person giving the test is wearing perfume! All those things effect the outcomes for a child on the spectrum. I can imagine how angry you were!
(edited like a crazy lady... this particular forum software is frustrating)
The kids are home, and life is returning to normal. She missed us as much as we missed her!