I’m asked this a lot and honestly before I became one, the idea of having a special needs child was scary. Often times when I tell people that Jared is developmentally half his age, some folks will give a look of pity, while others are surprised that I’ve held it together as well as I have. And other times I just might meet up with another special needs Mama who is an immediate friend. That’s one thing I learned very quickly–a definite, automatic camaraderie among special needs families.
One of the most important things I’ve learned is that my son or any other special needs child is NOT, by any means, an accident, nor are these special children “broken” or “freaks.” They were created and designed and I believe they are truly very special. I believe they are here to show us something and if more people would tune in and listen, they just might see something they’ve never noticed before.
Since my son went into the day habilitation center, I got a chance to connect with other adults who were parenting children with varying degrees of disabilities and delays, otherwise known as children who aren’t “typically developing,” a term I’ve come to despise, although still use so that no one gets confused when their doctor or therapist begins using it. One thing I noticed (I may get weird here) is that these children simply have a special light around them. I have a few friends with kids who have Down Syndrome and while others may tend to ignore them, I always catch a glow about them and other similar children just seem to be able to see right through us. It’s as though they’re a tad purer than the rest of us and are able to filter out all of the negativity.
Another thing I’ve learned is that it really is an honor to be a special needs parent.
The first thing I recommend to a parent is to start reading and questioning. Even though your child may now have a label, they’re still your child and no one (and I mean NO ONE) is going to know your child better than you. If something doesn’t feel or seem right, it probably isn’t. I know at least a hundred times I knew something wasn’t right, only to feel blown off. Don’t stop researching and questioning (even if it means needing to travel to a different state, which we’ve done).
Here are a few of the books I recommend all parents read (even if you have a “typically developing child”) Because I recognize that my son isn’t “broken,” I do not recommend nor read books in the hopes of “fixing” him, but rather to understand him and to help him deal with how he specifically processes the world around him. Also, while my own personal experience is with Sensory Processing/Integration Disorder, Language Disorder, Auditory Processing Disorder, OCD, the Highly Sensitive Personality, I have chatted with a few friends who also have special needs kids and asked them to recommend their own favorite books. If anything, reading about this will simply help to build awareness to those who may never have to live with this on a personal level.
The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction by Carol Stock Kranowitz
The Out-of-Sync Child has Fun: Activities for Kids with Sensory Processing Disorder by Carol Stock Kranowitz
The Highly Sensitive Child by Elaine N. Aron
The Highly Sensitive Person by Elaine N. Aron
A Parent’s Guide to Developmental Delays: Recognizing and Coping with Missed Milestones in Speech, Movement, Learning, and Other Areas by Laurie LeComer
When the Brain Can’t Hear : Unraveling the Mystery of Auditory Processing Disorder by Terri Bellis
Like Sound Through Water : A Mother’s Journey Through Auditory Processing Disorder by Karen Foli
Freeing Your Child from Obsessive-Compulsive Disorder: A Powerful, Practical Program for Parents of Children and Adolescents by Tamar Chansky
Understanding Autism For Dummies by Stephen Shore
Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives edited by Kathryn Soper
Babies With Down Syndrome: A New Parent’s Guide by Karen Stray-Gundersen
Count us In: Growing up with Down Syndrome by Jason Kingsley and Mitchell Levitz
The Late Talker: What to Do If Your Child Isn’t Talking Yet by Marilyn Agin
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