BellaOnline Forums Health and Fitness Autism Spectrum Disorders My Intro

Hi,

I'm Dana Married mother of 4 living in VT . We have Three ASD kids ( actually Dx PDD-NOS ) and one that appears to be unaffected. There is Kristopher age 11 , Megan age 8 , Erin age 6 And Amanda Age 3 its the older three who have ASD.

We have been in a nightmare with our school district for 3 yrs it is a very long story but in the end the state DOE found the district to be in noncompliance for illegally removing Kristopher's IEP in December 04. Currently we were able to get him a 504 , and we are going through Due Process. In our area this story is so big it was on the front page of Mondays newspaper.

The readers digest version is that the school refused to test Kristopher for almost two years , in December 04 they finally granted an observation ( which no one should confuse with an evaluation ) The results of which were many recommendation that we thought were wonderful. The school failed to put any into place and a month later our son collapsed. He stopped eating for seven weeks the only thing that kept him alive was Ensure , he also had to be put into a diaper. Kristopher went from 130 to 106 lbs in 6 weeks. He was admitted into the hospital where he was given the DX of PDD-NOS. That doctor made many recommendations none of which were put into place until March of 2005.

Because of what we learned from Kristopher we were able to get the girls diagnosed outside of the school system.

This has become a full time job for both my husband and I finding other parents who know what its like to have ASD kids on top of advocating for our children would be a wonderful thing to find.


Dana

Hi Dina and welcome:

Thanks for posting your intro and sharing a bit about your family's issues. Your two oldest are close to my two boys in age.

A few years ago Matthew was drinking Ensure Plus, but we learned through that he had a casein allergy as he started eating non food items (PICA). He had such feeding issues, still drinking the bottle and becoming dehydrated, which required a few Hospitalizations due to no drinking and also being anemic.

At one point his therapists wanted a g-tube, but the Pediatrician, GI Dr and I were against it. He went on Risperdal and drinks soy milk and gained weight, got his iron levels up and with almost three years of feeding therapy he is now at the highest percentile for his weight and I had to ask the school not to use food as a reinforcer due to his Dietitian saying no more weight gain.

He turns nine tomorrow and actually still drinks a bottle - we are in final stage, need to prepare for behavior issues, and also he wears Goodnites since I do not intend to potty train until the bottle is gone.

He takes his meds with the bottle too. He now consumes chicken nuggets and tomato soup.

I can imagine how rough those six weeks when Kristopher was only drinking the Ensure was on your family. Do Kristopher and Megan go to the same school? What grades did they just finish? I held both my kids back when they were in the first grade. It helped Nicholas out a lot, now he is going into fourth grade.

Is there a link available to the newspaper story on your family?

Glad to have you aboard here. Let me know if there is any topic you want covered as far as links or articles go at the site.

Hi,

Kristopher and Megan go to the same school we were able to keep Erin out of that school. This Fall Kristopher starts Middle school and Megan will be alone in that forsaken school. I couldnt figure out how to scan the story as text ( new scanner ) but its up in image format http://www.demerchantfamily.com/paper.jpj and http://www.demerchantfamily.com/paper1.jpg

Today we found out that it seems Amanda is falling on the AS scale but needs more testing.... sometimes I wonder how one family can have so many ASD kids.