What is Autism? Autism is a general term for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. Two of my children were diagnosed with PDD-NOS (Pervasive Developmental Delay Not Otherwise Specified). Which basically means they had significant delays across the board (motor skills, cognitive skills, communication etc.).
My boys were premature, born at 34 weeks. Although they spent two and three weeks in the NICU, they were very healthy. A friend of mine, who also had a premature baby, encouraged me to take advantage of Early Intervention. I had never heard of this program and had no idea what an impact it was about to have on my life and the lives of my boys.
One of the triplets wasn’t crawling yet – he would get around by doing the the “army crawl.” So, I thought MAYBE we should get him evaluated. MAYBE he would qualify for some sort of motor skill delay. I was shocked to find out that he qualified for a significant delay in communication. He was a baby. How was he supposed to be communicating? It was brought to my attention that he wasn’t pointing at things, he wasn’t trying to tell us what he wanted or needed. Just for the heck of it, I had my other son tested. To my surprise, not only did he qualify for a significant delay in communication, but he also qualified for a delay cognitive skills. I was shocked. So we continued with the testing and had my daughter evaluated. I never would have thought she would qualify special services – but again, I was wrong. She also qualified for a delay in communication. It was then that I realized that for the past year, we had been in survival mode. We were just trying to get through the day without our two year old stepping on one of the babies, or knocking them over in their swing. We weren’t exacting sitting down on the floor conducting tummy time and singing nursery rhymes with them.
Having them qualify for services was a very emotional time in our lives. I would often feel guilty and blame myself for their delays. What if I had been able to carry them for just a little bit longer? What if I could have done something differently during my pregnancy? What if I spent more time individually with them? Then the stigma of “special needs” kicked in. I would worry about them still needing services while they were in preschool. What if they had to ride the short school bus and be in a “special” class? I guess that’s what pride does to you. It was all about me, me, me. That’s when it kicked it – this is not about me. This is about them. And we are blessed enough to receive help at a very early age. I needed to start being grateful for this service and stop feeling sorry for myself.
Various therapists from Early Intervention would come to our home and work with the children. It was a great experience for us as a family, because the therapy was play-oriented and in a home environment. It was easy for me to watch how the therapist interacted with each child, so I could continue to work with them throughout the week. We saw immediate progress with my daughter. It was like she just needed a little kick-start and then she was fine. After six months of therapy, she “graduated” out of the program. The boys on the other hand, remained for the duration of the program. We learned that once a child turns three, they are no longer eligible for Early Intervention. At three years of age, they are turned over to the school district.
All three triplets were evaluated by the Child Study Team (a physical therapist, speech therapist, psychologist and occupational therapist) at the local elementary school. My daughter did not qualify for the Special Needs preschool program, but both boys did. It was at this time, we were told by the school psychologist that we should take the boys to a neurologist to “rule out” Autism. During the past two years, I had asked every single one of the therapists that came to our home if they thought the boys were on the Autism spectrum. Everyone of them told me NO. However, my mommy gut told me otherwise.
We took them to a local neurologist and during the first visit, after a very basic examination, they both received the PDD-NOS diagnosis. Six months later one the boys was also diagnosed with ODD (Oppositional Defiance Disorder). This was when our real journey began. They had their diagnosis, we had recommended treatment and therapy -but that was it. Again, nothing changed. When I asked for help from school, they said it was our responsibility. When I asked for help from our insurance company, they said the services weren’t covered. It wasn’t until I attended a local Autism support group that I learned how political Autism world was. It was then that I learned that if I wanted my children to get the services and therapy that they needed, that only I could make that happen. To make a long story short, we asked the school once more for the additional services, we were denied. We requested a second meeting; recorded that meeting; hired an attorney; scheduled a third party Special Education Consultant to observe their classroom and the very next day things changed. We received a call from the Child Study Team leader, asking if we would allow them to transfer the boys to a different school. This new school provided a full day of pre-school, integrated with typically developing students and the therapy they needed – including ABA.
The key – the third party Special Education Consultant. When in doubt, hire a consultant to observe your child in their current setting. This consultant will tell you the truth about whether or not your child is receiving the services they need. You can not rely on the teachers, the child study team, or anyone else.
When I first started to research my own symptoms and started to discover the truth about Lyme – I saw such a connection with Lyme and Autism. Not necessarily the physical symptoms (although I have read that some people with Lyme have been misdiagnosed with Autism) but the misconception, the politics, the fear of knowing what’s wrong but having no idea how to get help (without going broke). It’s amazing how similar the two battles are – which is why I feel so strongly about educating the public on this disease. I KNOW that this is why God has brought Lyme into my life. Not to punish me, or to make me suffer. We fought the Autism battle and won. I know the war will never end. BUT, we continue to win small battles and learn along the way. That’s what I plan to do with Lyme. Learn, educate, survive and ultimately defeat.
With my family, our courage, my faith and my God we can do this. Romans 8:21-31 . . . . If God is for us, who can be against us?