The huge variations between individuals on the autism spectrum are an especially baffling aspect of this disorder. Pam Halter shared the difficulties of being mom to a 19 year old who functions on the level of an 18 month old.
The same week I got Pam’s message, Bianca, a 13 year old member of New Moon Girls interviewed Temple Grandin for the website. Dr. Grandin is a hero for many members of NMG and she spoke honestly about the struggles of growing up autistic.
The disparity in daily life between Pam’s daughter Anna and Temple Grandin makes it hard to wrap my head around the fact that they have the same disorder.
When Pam wrote to us, she said, “Being the parent of a special needs child sucks the life clean out of you, but there are things to learn along the way that make it all worth it.”
My daughter, Anna, has Pervasive Developmental Disorder-Not Otherwise Specified and suffers from a seizure disorder.
She is 19 years old, but still functions at the level of about 18 months. Being the parent of a special needs child sucks the life clean out of you, but there are things to learn along the way that make it all worth it.
I have learned unconditional love. Anna loves me no matter how grumpy or tired I am. I can snap at her for something she has no control over, and she’ll still smile and want a hug.
I’ve learned to slow down. Anna can’t move fast or engage in many activities. At first, I felt frustrated, but then I realized my hectic schedule was killing me. I had fooled myself into thinking I worked better under pressure. What a lie!
I’ve learned I am selfish. Anna requires a tremendous amount of care and is a constant source of concern. I am often annoyed when I have to stop doing something to take care of Anna’s needs. She can’t dress herself, brush her teeth or hair, tie her shoes, fix a meal or snack, or take herself to the bathroom. Autism does not allow for anyone else’s needs, wants, feelings, or desires. I know all this, yet I continue to struggle inside.
I have learned strength of will. During the first year of Anna’s seizures, I bawled my eyes out after every episode. Twelve years later, I hold her through each one and ask God for strength and mercy. When I don’t fall apart, I can be there for Anna.
I’ve learned one of Anna’s hugs is worth a million dollars and that hearing “I luh you” is wealth beyond measure. It’s not an easy task, but I am thankful for the lessons autism has taught me.
Pam is working on a memoir about parenting a special needs child called, “Shut Up, It’s Not A Blessing!” in hopes it’ll grab an editor’s attention. “It won’t be a rant,” she says, “but a real, raw, honest look at how difficult the situation is, but also looking at all the good things that come out of it.”
We wish you lots of luck and writing time, Pam!
What resources help you in coping with your daughter’s special needs, whatever they are?