Where’s the instruction manual?

Sometimes I have wished that kids came with an instruction manual.  This is especially true when raising a child with special needs.

Most parenting books are designed to help parents gain the skills and expertise needed to raise healthy, well adjusted children.  Parents of kids with special needs desire that same thing, but the message we get is different.  Many professionals feel that we are not knowledgeable enough to make crucial decisions concerning our children.

I was talking with a friend who’s daughter has autism.  We were sharing stories about our struggles to get proper services for our kids over the years.  Each of us had experienced face-offs with professionals who tried to intimidate us by saying that they were the ones with the education, knowledge and experience to know what was best for our child.  Yet in these instances, our internal mommy-instinct was screaming back at us that the course outlined by the professionals was exactly wrong.  I told her that sometimes I had to bring out my mama-bear to protect my cub and then watch out!

Both of us are grateful that we found other professionals who agreed with us.  They helped us create appropriate educational programs, therapy regimes and medical protocols.  Our kids lives have been blessed because of the mentoring we received from these particular individuals.

Other families we have met are not so blessed.  Even with all of the changes in disability awareness and advocacy, some families are still under-served. I know several families that moved to different US states in order to get their child the services they needed.  Others have hired legal teams to fight the established educational system to create the appropriate program for their child.

Even though we are not handed instruction manuals when our kids are born, we can find mentors along the way to help us.  Published books, newsletters, Facebook groups, local advocacy groups and other parents have all assisted me at various times when I needed it.  They became my instruction manual.  We learned to gain the information we needed and then summon our courage to fight the needed battles for Nick.

If you are looking for the instruction manual, create it.  That’s what we did.  There are many that will help you.

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