The war continues but this battle is ours

[Guest guest]

This summer will mark the 5th year of our daughter's diagnosis of moderate to

severe autism, and it seems like a pretty good time to review both her progress

as well as ours.

 

At age five, she spent a great deal of time in her own world.  At her first

appointment with the psychiatrist, she made no eye contact, she sat with her

back to him on the floor, just rocking and putting toys in a straight line.  She

was extremely aggressive and frequently acted like she was in great pain.  The

best modern medicine could suggest was drugs, including seroquel, which while

they offered some control over her aggression, will likely shorten a life.

 

The state of Wisconsin generously offered intensive in-home therapy, but they

would limit this only to a therapy that would have caused more problems than it

helped.

 

The solution to this was simple.  If the help you need isn't there, then learn

how to do it yourself.

 

When ABA therapy caused problems, we learned about and switched to CBT.  Since

no one would help us with it and the insurance would not cover it, we did it on

our own.  Nothing different than parents have done for years.  It doesn't take a

Ph.D, just parents willing to work very hard.

 

We used chelation and diet changes, and slowly but surely she began to come

around.  We learned what her strengths were, and used CBT to build upon them. 

We used her small successes to build her self-esteme.  We used my experience in

martial arts to help her with her coordination.  The private school she attends

worked with us to instill these practices.

 

She now accepts responsibility for her actions.  When she first began to really

talk, she refered to herself as, " really stupid. "   Now she realizes how smart

she actually is.  She reads at an adult level and taught herself to do elementry

calculus.  Most importantly, she is now completely off seroquel and is

controlling her behavior very well.

 

Ofcourse problems still remain.  We are waiting to see if puberty causes

seizures.  She still has her meltdowns from time to time, but she is so far away

from the little girl she was when she was first diagnosed that we decided to

declare at least a battle victory.  The war is still on, but this victory was

worth the effort.

 

I wish you all well with your gifts, because that's what our children are.