Re: So much going on this week....Argggg!!!!

[Guest guest]

> They said that MA has been denying all claims for children who have

> not made significant progress and in two and a half years Ebony

> had made very little. So She gave me the number

> to MA and said to call and ask them about getting her

> a personal care worker (?). Never heard of this

> before, but to me it sounds like they are giving up on

> us! I was totally balling my eyes out after that

> call. :( What does this mean?????? She no longer

> needs someone to teach her skills because it is

> useless??? >>

Okay, Tamara...first off, if she is not making progress, then either

they are doing something wrong or this is the wrong type of program

for her, so I wouldn't worry about losing them. ;-) I don't know

what a " personal care worker " is...if it is someone who can be

utilized to teach her things, then I would start training him/her the

very first day in any interventions that work well for Ebony---

sensory diet activities, floortime, table work (you don't want to

lose the ability to sit at the table even if she isn't making

progress on what they were " teaching " her--if she will sit for a

treat, DO IT)...if this is just a person to take care of her (as in

baby sitting?) I would tell them gently but firmly that by law they

CAN'T give up on her at the age of 4 (right?); they MUST provide

appropriate educational activities for her, and it is their job to

find an approach that works. I would at LEAST fight for occupational

and speech therapy...in home if possible...based on the fact that she

has *severe* sensory issues that must be addressed before much

learning is going to happen. ABA hasn't worked...so now it's time to

look at other options. You can go back to ABA later if you want,

when she is more ready.

What are the other options? TEACCH is very good for many kids with

autism; floortime (they've renamed it but I can't recall the new

name...sorry...do you have " The Child with Special Needs " ?), " Ready "

Approach (Bonnie Hanschu, OTR), therapeutic listening programs (do a

web search on " Sheila Frick, OTR " or " Vital Sounds " )...there are so

many options out there. Also looking into nutritional

interventions... does well on calcium, magnesium, and

zinc...also did well on Coromega...each child is individual in their

nutritional needs, but there is a common thread of metabolic

challenges for many kids like this, so it is worth at least

investigating...the key there is to work with a receptive

doctor/pharmacist who can help sort out drug interactions, safe

amounts, and so on...then just try one thing at a time and see what

helps and what doesn't.

Look at things like hippotherapy or swimming time...ask an OT about

trying a weighted vest or Bearhug vest (really an amazing piece of

equipment for these kids)...lycra clothing or...lots of gentle

vestibular time (rocking, swinging, bouncing). Fight for an OT to

help you set up a good sensory based program for her...they should

give you that, especially if they are pulling out the other program.

The most important thing? Don't give up on her...there's a way to

reach her, I promise. We'll think it through as you try new

things...there will be positives. I will write more about what we

went through with later, but I need to go again; hope this has

helped a bit. There is a lot that can be done in terms of

environmental changes that can have a *huge* impact...want me to shut

up or keep on jabbering?

Raena