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Living with Autism

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May 17, 2012

Encouraging Parents of Children with Special Needs

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryYesterday I ran into a mom I know who has a daughter who is a near drowning victim. The daughter is severely-disabled now and the mom is dealing with having to consent to a surgery that will cut open her daughter to allow a surgery that will insert an intrathecal baclofen pump. She told me surgery involves a small catheter inserted into spinal fluid that is threaded to her daughter’s neck. As I listened to my friend speak about her fears and sadness over the decision to do this or not, I could see tears and fears flood her eyes and I thought about how no matter what our children’s medical challenges are, there is much pain for all involved. Decisions. Doubts. Despair.

Sure, living with severe autism is unique. It is different than living with Down Syndrome, Chromosomal abnormalities or a near drowning accident that leaves our children disabled. However, no matter what the challenge, parents in these situations are bonded through suffering. Hearts crushed. Hopes dashed. We know what it’s like when someone says they were so stressed out they had to “pull off the road and scream.” Or “were up all night having panic attacks.”

I don’t know what is worse. Having a child born completely healthy that nearly drowns and is now having spasms and needing operations to restore physical comfort, or having a child with autism that, for no apparent reason, suffers from chronic self-injurious behavior and epilepsy.

Whatever the challenge one thing is for sure: parents raising children with severe medical or behavioral challenges need help. And hope. And support.

Parents in crisis need to know they aren’t alone and that others are rooting for them. Indeed, nothing is more hurtful for a parent in crisis than thinking they are alone in the pain and suffering. Or that nobody else on this planet understands their struggle.

So, my message to all the parents out there, no matter what your child’s disability and no matter how it happened or what’s going on is you are NOT alone. And there is hope. Just as an athlete trains for years before they may win that gold medal, don’t give up. There WILL be victory. There WILL be a breakthrough. All hope is NOT lost.

My friend confessed to me she had a “meltdown” in her car last month. She had to pull off the side of the road and scream. A man walking by thought she was nuts. I can assure you she is NOT nuts. She’s dealing with a situation so complex, so deep and so chronic that unless you stood by her day by day, you wouldn’t understand it. So please, if you see or know of a parent of a severely-disabled child who is angry, sad or lashing out, please don’t be afraid to help. Don’t shy away from delivering a kind word. Don’t think that they are crazy. Imagine the life they live. Have mercy. 

A random act of kindness or a word of encouragement may be all they need to get over their latest dark and confusing valley. A word of wisdom or hope may be all they need to quell increasing thoughts of suicide or giving up all hope. Don’t miss the opportunity to tell them they are strong, they are wise and their children will get better. Every mother and father of a disabled child wants to know that their endless efforts, in the face of endless disappointments, aren’t for nothing.

“No act of kindness no matter how small is ever wasted”. Aesop.

“In a world full of people who couldn’t care less, be someone who couldn’t care more.” __ Author Unknown.

“Kind words can be short and easy to speak, but their echoes are truly endless.” __Mother Teresa.