Margaret and Monkeys

[Guest guest]

Margaret:

It will be interesting to see if other doctors have other theories. There

are some similarities between Gareth and Tony (pseudo seizures, maybe

hallucinations). Tony was first diagnosed with Post Traumatic Stress

Disorder instead of PDD. So my OPINION having both boys and having worked

previously with individuals with Down syndrome is that their " ego strength "

is not as strong just as their bodies are not as strong. Both of my boys

seem more traumatized by events than other children would be and it is

beyond explaining away with sensory issues. And I don't mean to generalize

because I so don't buy the generalization of children with Down syndrome

(loving but stubborn and all that crap). But Tony is still " recovering "

from his first three years of life and while I thought his foster home was

benignly neglectful - if there is such a thing - why did it cause PTSD? But

then maybe it is just the mixed signals that society constantly gives -

people are either treat my kids as if they are way younger than they are or

they have higher expectations that what is realistic and/or they dismiss

them altogether. Imagine trying to make sense of all of that?

Tony had a bunch of medical procedures when he was in foster care and I have

always wondered if that caused the PTSD. It was reported to me that he was

a very sickly child and I was supposed to pick up a nebulizer when I took

him home but I did not. And he has been very healthy since coming to our

house.

Also, we are homeschooling him this year and he is doing so much better.

Not a sniffle yet this year and yet last year it appeared as if he was

allergic to the school he sniffed so bad Monday through Friday.

It is really difficult to sift this all through. I appreciate more so for

you and Gareth because of the increased medical concerns.

Tony has been telling me for weeks now that there are monkeys in the house

down the street. Every time we pass the house he says, " go here, visit the

monkeys. " I ask him how many monkeys and what are they doing because I

thought it was pretend play but it seems more extreme than typical pretend

play. So I'm either going to call Animal Control or worry that he sees

things I don't.

All this to say that I haven't been very impressed with either the

psychologist, the neuropsychologist, or the neurologist that have all seen

Tony and seen something different.

When we " sift " through the complications on our own we have Tony who had to

go to work with me today and happily did his homeschooling at a desk near

mine. He did it quietly and competently (though I did have to bribe him

with a trip to the vending machine to get Fritos) who since we have taken

him out of school no longer has many of the autistic characteristics and

certainly no more of the pseudo seizures.

While I originally thought the person who diagnosed him with PTSD was off

the wall, I now think that is the best explanation though it also is still

lacking.

It is all very complicated and no one is as probably invested as we the

parents. Maybe Gareth has PTSD and undiagnosed medical problem?

Lori

Mom to Isaac 13 and Tony 11