Like most parents of children with autism, I have found the anecdote by Emily Perl Kingsley’s unplanned trip to Holland to be particularly apt. For those who haven’t heard, or are new to the autism community, here it is, paraphrased:
When people discover they are going to be parents, most dive head first into books such as the What to Expect series. We devour everything we can get our hands on. We want to learn what to do and what not to do, how our bodies will transform, how our relationships will change…in short, we do everything we can to prepare for the most awesome experience of our lives.
Compare this to planning for your next vacation. Emily Perl Kingsley supposes a trip to Italy. Again, you buy the guide books, research everything online from where to stay, what to visit, even how much to tip the wait staff. When it is time for your vacation, you see yourself as something of an expert on Italy, or at last as much as an expert one can be without ever having VISITED Italy! All things Italy – that’s been your focus for the past few months. The planning, the hopes, the dreams are all associated with Italy. You pop on your plane. After taxiing down the runway, you are thrust into the air. What seems to be an eternity later, you touch down and grab your carry-on bag from the overhead bin. You are READY for Italy.
Then you hear it. The voice that rocks your world. The words you will never forget: Welcome to Holland.
Your son has autism.
Wait a minute – Holland? Autism? We were supposed to go to Italy!How did we get HERE? We were supposed to have a healthy, “normal” child!
Now what do you do?
This is our story:
In the late spring of 2008, we finalized the adoption of our two sons. We were the boys’ foster parents for eight months leading up to the adoption, so the fact that our boys “had issues” was well documented and very much in the forefront of our minds. Once all of the legal mumbo-jumbo was out of the way, we could begin the daunting task of figuring out exactly what was wrong. What was causing the four hour meltdowns? The self-injurious behaviors? The inability for our sons to speak or for them to understand what we were saying to them?
So we clawed and fought and screamed at the tops of our lungs to get referrals and appointments. We found doors to knock on, but the fight didn’t stop there – no one would open the doors for us. No. Knocking didn’t work. We had to kick doors in; we had to FIGHT to even get seen by the professionals. And after a year of struggles, we did in fact receive autism diagnosis for both boys. We were told that most likely that the oldest of our sons would never be able to live on his own, that, at best, he would live in a group home situation, "worst case" would be that we never need worry about experiencing Empty Nest Syndrome.
And then we were shown the door.
We left the Packard Children's Hospital at Stanford with a small list of reading suggestions and websites. But no hope. No help. How we would live in spite of the autism diagnosis? How could we help our boys be the best “them” that they could be? We had no clue. The most devastating and difficult part of this time was that we really didn’t know the next step to take. Who should we see now? Who could help our boys?
Okay – they have autism. Now what?
After a year of wandering in the Autism Diagnosis Desert, a wasteland void of information and assistance, I came across some autism blogs. Aha! THIS was the Promised Land. A land where there were many seasoned guides ready, excited and so willing to help direct us to the path that was right for us.
Living life after the diagnosis is difficult at best. My goal with our partnership with Tidewater Parent is to help connect as many special needs parents as possible. There has been a dearth of special needs parenting information in ALL parenting magazines. Everything is geared towards the masses – towards the “typical”. And I can appreciate that.
But now is the time to change that. To lift families up. To share information. To lighten the load of special needs families throughout Hampton Roads. This column will be one small step in an effort to help one families get through their confusion, heartbreak and, yes, hopelessness at hearing the words “Your Child Has Autism.”
I’ll also be working with the folks at Tidewater Parent to bolster up the special needs section on their website. We’ll be putting up links addressing IEP help, insurance information, local therapists and more. Your input and your interaction is critical to the success of this endeavor. Experienced autism parents – you are needed! Share your wisdom – let us learn from your experiences.
Kelly blogs at http://UnplannedTripToHolland.Blogspot.com. She writes - and occasionally uses words that only mommies should use - about her experiences as a mom to three children, two of whom are somewhere on the spectrum, life as a military spouse and the unbelievable – yet true – craziness that is her life. She enjoys long walks in the moonlight, cheesy romance novels and copious amounts of rum.
She is also a contributing writer in the book Wit and Wisdom from the Parents of Special Needs Kids: Mostly True Stories of Life on the Spectrum, by Lynn Hudoba. Wit and Wisdom can be found on Amazon.com. You can contact her at firstname.lastname@example.org..