Shane was a delightful baby, full of laughter, smiles, love. Starting at around two years of age, we began to see signs that something wasn’t quite right. There were incidents of aggression, severe meltdowns with no obvious cause, hitting, throwing chairs, etc. I had to go the emergency room twice from injuries resulting from physical aggression, once for getting hit in the ear with a rock and again for a scratched cornea. He even broke his time-out chair! He seemed so happy but switched moods in an instant…like Dr. Jekyll and Mr. Hyde.
In an effort to put him in situations where he would get more socialization, we enrolled him into the half-day program at the YMCA. After many phone calls from the school to report incidents of hitting, biting, throwing chairs and fits of rage, he was deemed “not a good fit” for their program. Even when we went to the gym to work out and put him in the childcare for less than an hour, we were called for the same reasons.
Bound to get him into some sort of a program, we found another preschool where the teacher seemed to be the right fit for Shane. She was patient, persistent, kind and he adored her. He still continued to have outbursts, but she used tactics that seemed to help him calm down. I still received phone calls and had to pick him up several times. But, the school made a huge effort to help develop a plan that would work for him and help him cope with a stressful/different environment.
A couple of months after he started his new preschool, his teacher called and said, “I think Shane just had a seizure.” Her brother was an epileptic so she was familiar with signs to look for. We had seen instances of him staring for what seemed like a really long time. It was usually after an outburst and we assumed he had just worn himself out (I would been exhausted if I threw fits like that! ). The next time we saw it happen, we called his name and he didn’t answer nor did he blink or respond in any way. Although it seemed like forever before he responded, the spells really only lasted 5-7 seconds.
We took him to the pediatrician thinking the switching of moods so quickly might have something to do with diet, seizures or something else not obvious to us. We just knew that whatever was going on was not “normal.” Our pediatrician dismissed our claims by saying, “He’s just a two year old boy.” She obviously wasn’t listening when we described the extent of his daily behavior. She suggested that we make sure he had something to eat every couple of hours (yeah, that’s it…we were starving him :S) to see if spikes or drops in sugar levels could be affecting his behavior. No tests were conducted. We left feeling totally defeated but knew that we were strong parents and would figure out methods that would work.
The disruptive behavior continued to escalate. We finally made our way to a pediatric neurologist. It was discovered that he had an arachnoid cyst on his brain in an area that could cause seizures. We were sent to a neurosurgeon who advised us that it was the type of cyst that is slow growing and not likely to ever cause a problem. We were told to get new MRIs every two years to make sure it isn’t growing. Based on history of staring spells, he was placed on medication for seizures. Since starting the medication two years or so ago, we have only seen a few other incidents of the staring, but the aggression, outbursts, etc. continued.
During all this time, he was never able to have “real” play-dates because he had major social issues with other children. We felt really sad and sorry for him and hoped for the best every time other children were around. He became easily overwhelmed, frustrated, hit other kids (not with ill intent), had major meltdowns, then withdrew. He preferred going to a corner and playing alone. He had invisible friends that he preferred to interact with and whispered to them while everyone else went about their business. Any new situations and changes in routine were too much for him to handle. He covered his ears when the vacuum came on, ran out of the bathroom when the toilet was flushed and screamed in public restrooms when the hand dryers came on. Certain stores and restaurants instantly caused meltdowns for no obvious reasons. We got the “looks” from other shoppers whose children must be perfect (screw them, by the way). That made it worse and made us feel even more like total failures as parents.
In August 2010, he started kindergarten at a public school. Given our history, we crossed our fingers and hoped for the best. Needless to say, it didn’t go very well and we removed him resigning ourselves to the fact that he would have to be in another learning environment. We just didn’t know what.
We desperately searched for answers and after a series of evaluations with a child psychologist, he was diagnosed with an Autism Spectrum Disorder (ASD); specifically Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and Attention Deficit/Hyperactivity Disorder (ADHD). Although it was a swift kick in the stomach to hear the word “Autism,” it explained a lot and gave us many answers. But, more importantly it opened doors to resources we did not have before. Microsoft has benefits unlike any other and has allowed him to get into a program to address his specific needs with intensive Applied Behavioral Analysis (ABA) therapy.
Even with the challenges, we’ve experienced more joy in our lives because of Shane. We are thankful everyday for the alignment of the stars that brought him into our lives. He makes us laugh daily. He is a sweet, gentle soul. His innocence amazes me. He has the longest eyelashes most girls would kill for and beautiful brown eyes to match. He has a fabulous imagination, tells the best stories (he won the “Best Storyteller Award” at school), offers enlightening insight and views on life, runs outside in his underwear to greet the pizza delivery person, embraces things he’s afraid of (like zombie babies), gives the best hugs (even to strangers) and is beautiful inside and out.
I’m done writing about the history and events that got us here today. It’s boring for readers, but doing so has been therapeutic for me and I hope helps create more awareness of ASD/PPD-NOS/ADHD. It is estimated that 1 in 100 children have ASD. On average, it is 4 to 5 times more likely to occur in boys than in girls. It’s an epidemic, people!
Now, on to the fun stuff which is sharing stories about his little quirks, creativity and other things that keep us laughing. Get ready to meet the REAL Shaney P Robinson in all his glory!
Speaking of Shaney in all his glory: Meet the nekkid cowboy!