"We're Not in Kansas Anymore Toto!"

Welcome to the world of having a special needs child

As we are growing up, we imagine what our future lives might be like- a bride, parent, in a particular career or profession. We continue to learn and explore what our niche in the world will be and get set to "conquer the world".

Growing up in a close knit "Big Fat" extended family with cousins by the dozens, I always wanted my life to follow suit and thought it would. After changing my college major from pre- nursing to social work, I had found my niche. I fine tuned it with a Masters in Special Ed and was ready to conquer the special ed world and solve the mysteries of Autism. Some years later, I would come to find out that God had a very different plan for me.

A girl playing house

A teacher teaching children

Talking about secrets and dreams

“Why me? Why my baby?”

"our miraculous little tummy tumbler was here! Little did we know that cuddling, bonding, nursing, and cooing would be replaced by colic & reflux, refused feedings, medication, sensory integration dysfunction, torticollis, therapy and sleepless nights. Our plans and dreams were turned upside down! (sounding familiar yet?) I was soon to find out, when you learn that this perfect little cherub you've held in your heart since conception [if not before] has special needs, you enter an emotional rollercoaster...."

My story (in a nut shell)

After a l-o-n-g and difficult delivery (so much for the total Lamaze experience), 27 years ago I was blessed with a chubby cheeked baby boy. From day one he had feeding issues, severe reflux and sensory issues. By 6 mos. he was diagnosed with Torticollis and started PT. By 16 mos., a diagnoses as a classic textbook Sensory Integration Processing Disorder case was added. After a nasty bout with bronchitis(possible Mycoplasma P) at 2 yrs, we began the special diets and biomedical interventions. Although I suspected since he was 1 year old, in second grade we got a diagnosis of Asperger's Syndrome (Level ASD). Since every salad needs a dressing, later on PANDAS, Lyme and mold exposure were added to the mix.

Having a child with special needs, whether from birth, or diagnosed later on, comes with a multitude of emotions and stressors. When you learn that this perfect little cherub you've held in your heart since conception [if not before] has special needs, you enter an emotional rollercoaster, similar to the "stages of death". Those stages being: denial, bargaining, guilt, anger depression and acceptance. For any two parents, the stages experienced and the degree to which they are experienced varies. Stressors will vary and change with every stage of your child's life- and yours. It's important early on, to seek out resources for your child and importantly, for yourself. Just like the flight attendants tell us on a plane, - give yourself the oxygen mask first so that you can take care of your child. Raising a special needs child is both physically and emotionally draining. It's important to seek out support through whatever means are available. This may mean counseling from your clergy, joining Facebook parent support groups, local community in person support groups and even one to one counseling.

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At the Special Needs Parent Network our goal is to reach out, network and educate. But most importantly - plant the seeds of change to hopefully bridge the gaps that challenge our children. Remember....the seed of change can be planted by one, but it's a shared commitment and nurturing that makes it grow ! Together we can make a difference!

So if you find yourself saying "We're not in Kansas anymore", remember YOU ARE NOT ALONE. We are here to help. Click the button above to join our mailing list to receive blog updates and network news.