As special needs parents, we often feel like we’re in a boxing ring. We walk around wearing boxing gloves daily. We never know when we’ll have to put our dukes up and FIGHT. We have to keep our guard up at all times and be ready to rumble. Sometimes we victoriously win the match with a technical knock-out. Other times, we come out of a situation having suffered a gut-wrenching defeat.
When you finally have a firm diagnosis on paper, after waiting anxiously and patiently for it, you think that things will easily fall into place.
The missing piece to your child’s puzzle has been found, and services will magically open up and be made available, right?
WRONG. Hundreds of phone calls to service coordinators, government agencies, insurance companies and mental health and behavioral specialists have left me with the wind knocked out of me.
A school system that places more importance on the COST of school services for your child than the child’s actual well-being….accommodations that are written as a plan to be followed for your child but fall by the wayside: these things force us Autism Moms to FIGHT.
When an IEP is changed and your child loses invaluable services, the battle within you wages on. When a Shadow is denied for your child because it’s too “costly”, you make more phone calls, write emails and letters, securing your place in boxing ring.
I have been in matches and gone round and round with different agencies, school officials, and insurance companies.
My son is eleven years old. I am a seasoned fighter. I have pulled my son from school, and turned our dining room into a home-school learning environment.
I have painstakingly sought out Autism Spectrum Disorder groups for him, argued with doctors about needed medications and begged the system for help with expensive, necessary therapies. I have given dirty looks to strangers when I felt them staring at us in public….times when life was overwhelming for my child….when the movie theatre was too loud, the circus was too crowded and the restaurant’s smells were too pungent.
I have fought for him, and with every breath in me, I will continue to fight for him. The fight is one thing that has remained constant over time. I won’t be retiring from the ring any time soon. He is worth every blow, every punch and every swing that comes our way.
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