“Can I bring my supervisor along to your child’s next visit?”
Simple enough question right? But to you it means your child isn’t making enough progress and they are coming to evaluate your child’s efforts – and ultimately your performance as a special needs parent. After all if your child isn’t making progress or not making it as fast as professionals expect – then the problem must be that the parent isn’t giving it everything they have.
We are balancing all things; therapies, doctor’s appointments, laundry, cooking dinner, cleaning, sterilizing a defense against germs, raising multiple children with different abilities, dealing with equipment vendors, insurance companies, government agencies, caseworkers, supervisors, foundations, non-profit organizations, writing letters, returning phone calls, hosting fundraisers, responding to emails, driving to and from appointments, filling out appeals forms, challenging the lack of government benefits, SSI overpayments, doing therapy exercises at home, requesting information, researching – oh God – the researching of new products — the latest developments — and why on earth your child with special needs just sprouted a little red dot on the back of his arm on WebMD.
But it’s not enough, it’s never enough.
Because inevitably someone will come along and find fault with the job you are doing. With the position we are in we must accept and invite countless people into our home and our child’s life all in the name of therapy and rehabilitation – for the quest of providing the best life we can provide for them. We sacrifice our privacy, having our own itinerary and daily agendas, because our LOVE for our child with special needs is so much bigger than anything else we wish for in our lives.
“You need to be practicing with him at least once every day for a minimum of fifteen minutes,” they say; “force him into communicating better by not giving into his tantrums and forcing him to scream it out and make a decision on his communication device” – (even if that means you lose your sanity and you put him at an aspiration risk for getting that upset) or “invest in new applications, gadgets and resources” that you have no financial means to obtain – because he needs them.
While likely well intentioned, what I hear when I translate that all in my head is:
“You aren’t doing enough.”
“It’s your fault your child is severely disabled and isn’t walking, talking, crawling, or self-feeding.”
“Your parenting of your child with special needs is inadequate.”
What I need to hear:
“You’re doing a really great job and we see progress in him, no matter how small you both are still working really hard.”
“We understand you can’t let him get that upset and we’ll see if we can find another way to make things work for him.”
“Don’t worry. We’ll find a way to get you those applications, gadgets, and resources.”
I so desperately want someone to come in and be a part of my solution – not my ongoing problems. Please be that person who rings my doorbell to assist my child that isn’t itching to give me negative feedback… be the person eager to offer uplifting encouragement. We need that.