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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Wednesday, March 11, 2009

News on DDD-DES-AZEIP-Rally in Tucson Friday

This blog:http://uponeagleswings.blogspot.com/2009/03/ddd-update.html has information concerned parents will want to know.


If you live in Tucson, we have another rally on Friday the 13th from 10am-12pm in support of parents whose infants and toddlers lost AZEIP services. The rally will be held at Reid Park in Ramada 7. I plan on getting the girls dressed and out there to support all of the families who lost services.


Here is a local news story about how the budget cuts affect some of our children:

http://www.kold.com/Global/story.asp?S=9947497



We are lucky that our girls get federal funding for their therapy. They are older children, and this is why all three qualified for AZ long term care. Meghan was lucky to have her early intervention services, and we were lucky to have Maria, Judy, Pam, and Aida here for her. With their help and guidance, we were able to do so much more for Meghan than we ever could have done by ourselves. They were all experienced, caring, and well educated. It is insane to think that parents can read a book and do what trained therapists do with our kids.


I know that Meghan would not be where she is now without her early intervention team in her life. Compare Meghan to her two little sisters, girls adopted from special needs orphanages. We know Kara's orphanage did some play therapy with her, she is great at puzzles and has good problem solving skills. We know Amanda's orphanage had good equipment, but are uncertain about therapy for her. Neither one of the were walking when we adopted them, Kara began walking all the time last Christmas; she was 4, Amanda is no where near ready to walk, she will be 4 this month. I am certain that if both girls had the proper support and therapy that walking would not have been one of their biggest delays.


Kara cannot talk and knows very little sign, she should have had speech therapy a long time ago, but did not. We are trying to make up for that, but she had to unlearn Russian and learn English, and that takes time, average of 6-12 months. I know they tried to help Kara talk, but without the therapists we take for granted here (until the budget cuts) the caregivers did not know how to help her, Kara could not chew her food when we adopted her, she could not swallow without gulping and she choked all the time, and she had no idea how to feed herself. She has changed so much since being home, with the tools we gained from Meghan's therapy and advice from Meghan's ST, we helped Kara.


Amanda is a babbler, she can say Dada and Mama 70% of the time. Her gross motor skills are delayed, so much so, she tests below 1 percentile for her age. Her muscles are underdeveloped and weak, and PT would have helped her get stronger.


Amanda has many issues, not all of them associated with Down syndrome, but also with Aniridia. She also has torticollis ( we are sure it was more severe as an infant, she always drops her head to the left, the side of her head that is flat) the PT who evaluated her last month felt it caused her positional plagiocephaly. If Amanda had early intervention, both could have been addressed in her infancy. She would not have the asymmetry to her skull. Now that she is almost 4, nothing except surgery can correct Amanda's skull shape, and unless it is causing her neurological issues, we will not consider it.


We spoon feed Amanda, she has no interest in feeding herself at this time, she cannot chew and has a very difficult time moving her food to the back of her mouth to swallow it.


Yes, with a diagnosis of Down syndrome we can expect global delay, Kara and Amanda did not get the therapy Meghan did, you can tell that they did not. When I fist met Kara I was shocked by her extreme delay, she seemd like an infant to us, her development that of a baby under a year old. In some European countries, they do not believe children with disabilities have a chance of a future, they see their disability and declare that they are oligophrenic (Greek for small brained) Because of that belief, the children are not taught to do anything, very little is expected out of them, and they are left alone all too often.

I saved this link from a email log of a woman who visited Russia and the special needs orphanages and institutions there. Her name is Sarah Settelen and she and therapists from England work with special needs orphans.
http://www.elliesettelen.net/sushki.htm is her email archive from her initial visit.

Watch the VIDEO, and see, really SEE how the lack of therapy affects our children with special needs, and watch to the end, and see the amazing progress that can be made with the attention, care and constancy of a loving caregiver using therapy to help the children in her charge. No, children like Meghan with loving parents do not suffer the neglect these children did, and yes, that neglect also contributes to the extreme delays you see in institutionalized children, but the video is telling too, because many of our children born with disabilities were in places very much like this 30 years ago. The children did not learn more simply because the caregivers did not think they could do anything, both here and in other countries. Once the caregivers were shown techniques to help, and each child was given one on one attention, they made tremendous progress, but what was lost in their very early years, who could they have been with early intervention?

What concerns me about our budget cuts is the message it sends to me and mothers like me, it says that our government also believes our children have no future, so why bother? Why else would they pull funding? It hurts me to the core that they would have so little regard for the children who need their help the most. I cannot help but be flabbergasted by the program cuts.

I wrote this quickly, Amanda is awake and ready to eat breakfast and I lost my train of thought, so sorry if I was rambling. The life of a mom!

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