“You can choose to blame your circumstances on fate or bad luck or bad choices.
Or you can fight back. Things aren’t always going to be fair in the real world. ”
A mother never forgets the day their children were born. The moment you hold their warm. small and fragile bodies in your arms. The immense love that overwhelms you as you gaze into their eyes for the first time and you know that precious beautiful life is a part of you. When your child is born healthy, whole, and without any type of disability you feel an unspoken sense of relief and gratitude. Your’re thankful that you are one of the lucky parents whose child doesn’t have a debilitating illness. You never stop to imagine that the beautiful child you have wrapped safe within your arms, the one who looks so healthy and whole, will one day have a severe mental illness. That only happens to other families, not yours and not to your child.
When Jordan was a baby he was healthy and reached all the normal milestones a child should achieve. He was a happy, sweet baby who slept well, ate well, and never showed any sign that anything could be amiss. Jordan was affectionate with his sister and other family members. He never had an issue with strangers or playing with other children as he grew into a toddler. When my son was around three years old he did endure a few physical illnesses. He would suffer from high fevers that resulted in febrile seizures. They never seemed to have any lasting effects so there was no concern from his doctors or myself. It wasn’t until Jordan entered preschool that small behavioral issues began occurring here and there.
Early on there were no behaviors occurring at home while Jordan was with me. They were always when he was away or going away from me. When I would take Jordan to preschool he would often latch onto me, scream, cry, and beg me not to leave him. But many young children did the same to their parents. Once I left, I would call to check in on him and the providers would let me know that he would calm down around five minutes after I had departed. Oft times when I picked Jordan up from the providers, they would talk to me about little odd things Jordan would do while in their care. He was often put in timeout for not following directions. I thought it odd since he was so well behaved at home. I felt that perhaps he was just having a difficult time adjusting when he was away from me for long periods. I thought as he grew older and became used to being at daycare or school that his behaviors would improve. That was not to the case.
When Jordan began kindergarten, that was when the real issues began to manifest. The first week seemed ok, but soon I began receiving phone calls at work from the school. They were saying that Jordan was leaving the classroom, running around the campus, and that his behaviors were uncontrollable. I was absolutely flabbergasted. I couldn’t believe what I was hearing. I never saw this side of him at home, why was he behaving this way at school? These behaviors continued and soon I was having to leave work early and pick him up almost everyday. At this point I became extremely concerned and took him to a therapist. At the time, the therapist felt he had severe separation anxiety disorder. Both the school and the therapist felt it best I withdraw him from school and start him again the next year when he was older and more mature. I took their advice and withdrew him while keeping him in therapy for a time. Slowly things seemed to settle down, but the behaviors he had showed at school soon began exhibiting themselves in front of others, including myself.
When Jordan was six I re-enrolled him in school. At this time we were all seeing some behaviors, but nothing too extreme until he once again began school. Jordan did well for around a month and I was encouraged that this time around would be different, but the the phone calls began once again. This time it was worse. The school said that “Jordan was running around the campus, they couldn’t maintain him in the classroom, he had difficulty engaging with other children, he was violent at times, and would try to leave the campus.” I was in shock, I couldn’t believe it. What was going on with my child? My baby. This couldn’t be happening. The school talked to me about getting him an IEP, something I had never heard of before. I had once again gotten him a therapist and worked hard to figure out what was happening to my child. The behaviors started to bleed over into the home environment. He would have extreme meltdowns that lasted five to six hours. He would scream, cry, and rage over something as simple as not being allowed to have a doughnut. We had to take him to the emergency room on several occasions. He refused to sleep in his room alone, he became fixated on particular subjects and had trouble defining reality and fantasy at times. When I had to pick him up from his rages at school he would threaten to throw himself out of the car and would talk about killing himself. I just kept thinking “My God! He’s only six years old. What the hell is happening!?” The school was about as much help at the time as his therapist. Meaning no help at all. In fact, the school psychologist eluded that perhaps it was my fault he was behaving the way he was. It was unbelievable! I wasn’t getting answers anywhere and all the while my child was deteriorating mentally right before my eyes on a daily basis.
I began placing phone calls and trying to find a place I could get my child evaluated professionally. Finally I was able to have Jordan evaluated at “The Child Study Center” in Carlsbad, Ca. After a week of testing the psychologist there determined that my son had Aspergers Syndrome, severe anxiety, and mood disorder/nos (not otherwise specified). I was heartbroken and relieved all at the same time. I was relieved that we were finally getting some answers and a real diagnoses, and heartbroken that he had a diagnoses that was so life changing. At the time, I didn’t realize that having an Aspergers diagnoses was a blessing compared to the diagnoses that was to come in just a few short years.
Once the doctor determined that Jordan had Aspergers they put him on risperdal and like magic the extreme six hour meltdowns stopped overnight. He was still having challenges at school and the school was still behaving in an irresponsible, bullish, and abhorrent manner so I withdrew Jordan once again and enrolled him in a Charter School where I was mostly homeschooling him. I was naive at the time and didn’t fully understand what my rights were and what the schools responsibility to my son were under the law according to an IEP. That was a passiveness and naivety that wouldn’t last long. One thing you learn over the years when you have a child with special needs is that there is NO room for passiveness. You have to advocate strongly and loudly or you’ll find yourselves bullied and pushed aside by the people who are supposed to be helping you. Not in all circumstances, but I have found the schools to be the worst perpetrators in trying to avoid helping you in any way if they can avoid it.
Aspergers was the first diagnoses in a list of many diagnoses to come. My husband, who at the time was my boyfriend in which my son and I lived with lost his military contract job when the economy collapsed. He was able to find new employment a short time later which had us relocating to San Jose, Ca. It is in San Jose that things really began to change for the worse and new symptoms would begin to manifest themselves, but I’ll save that for another post.
- Video of Six Asperger’s traits: Tips for parents of newly diagnosed Asperger’s children (myautismjourney.wordpress.com)