Trippin’ Over Road Trip FAIL

So… what do you get when you cross a small Ford Focus, three children (one of which likes her music LOUD), a 125+ lb. Alaskan Malamute in heat, a child with Autism and Sensory Processing issues, and a last-minute four-hour road trip? Road trip FAIL.

At least I can laugh about it now. Let’s hope my son can, too!

You see, I knew better. I KNOW better. I post daily inspiring tips, quotes, and updates on Facebook and Twitter about how to prepare for doing virtually ANYTHING with your Autistic child. Yet, here I was – frenzied, overbooked, and trying to leave town at the last minute – totally unprepared.

The problem? I didn’t arm him with any necessary tools or supports against the boredom of a long trip, his sister’s loud music, being cramped and unable to stretch out when his body needed it, the lack of available favorite snacks and drinks on the road, the chaos of a hotel room, and the absence of a schedule while there.

The result? A child that screamed, threw toys around, harassed the dog, twisted himself up in his seat belt, and repeatedly kicked the back of the driver’s seat while I was trying to safely operate our vehicle. In the hotel he was hyper, loud, and severely discombobulated when it came to what he expected would happen while we were there.

What my daughter, her friend and I saw and were annoyed by, of course, can’t possibly compare to the discomfort, frustration, and confusion he experienced from being thrust into this situation unarmed. Oh, and when you ask your child if they want to bring their favorite supports and they say “no” – PACK THEM ANYWAY! They don’t know that they will need them!

So here’s a look back at what I could have done right (and will do next time!):

Weigh it out

I was so concerned with getting on the road on time that I did not prepare. How long would it really have taken for me to pack additional items and take the time to talk to him about what was happening? How much time would it have added to our trip to make a few more stops? I’m sure the dog would have appreciated it, too!

For a few extra minutes of planning and preparing, I could have avoided frustration for all of us during this trip. LESSON LEARNED!

DENIED! Why am I Doing the Happy Dance?

Six months ago I applied for SSI Disability to help me provide for my Autistic son. Meeting the income guidelines for this assistance, I jumped through all the required hoops of their dog and pony show. I supplied them with a 92-page history and timeline of all Justin’s diagnoses, school records, IEP copies, behavioral and developmental assessments, medication history (yes, I at one time investigated that route out of sheer desperation – a story for another day), and every behavior slip, suspension and punishment notice he’d ever received.

I saw their doctor. I followed up, week after week, inquiring about their decision. All the while, in my journey, I was learning about my son and Autism. I was not happy with the doctor visits, the medication attempt, the rigid recommendations, the books, the cookie-cutter approaches.

In this journey I came across a book by Dr. Robert Melillo called Disconnected Kids. Along with the centers he founded, this book offered a scientifically proven theory about a hemispheric imbalance in children with Autism, ADHD, Dyslexia, Tourette’s, and other disorders. I voraciously digested this information and began applying what I learned immediately. I tested and modified some of the sensory exercises and techniques. I expanded my research on the nutritional guidelines. I drew some new conclusions.

I began supplementing with EFT, teaching my son to tap and performing surrogate tapping when he could not. I also began graciously opening my heart and accepting the gifts of his beautiful mind. The docile nature of our beautiful Alaskan Malamute, Juno, has also had an extremely calming effect on him.

These things combined have changed our world. Oh, our journey is nowhere complete, as he still cannot tie his shoes or ride a bike; we still have days where a trip to the grocery store is a nightmare. It still takes an Act of Congress to get him ready in the morning on time for school. We are working on it, as I refine the techniques that have shown me hope and success. He is now able to smell and recognize scents; we can go to the movies and sit through an entire film; I don’t receive calls to pick him up from school early for being out of control… and he was denied for SSI.

According to my letter, “… the evidence does not show that these conditions are severe enough to be disabling. We have decided that Justin’s condition is not disabling under our rules.”

I’ve been denied, and I’m ecstatic! What mother would not want this kind of news?