"If we do not rise to the challenge of our unique capacity to shape our lives, to seek the kinds of growth that we find individually fulfilling, then we can have no security: we will live in a world of sham, in which our selves are determined by the will of others, in which we will be constantly buffeted and increasingly isolated by the changes round us." ~ Nena O'Neil ~
One plus one doesn't equal two is a blog about a mother's challenges having a child diagnosed with an Autism Spectrum Disorder. By way of introduction, this entry post will be relatively long.
Several years ago my 8 year old son, Aren, presently in the 3rd grade, was diagnosed with PDD-NOS (pervasive developmental disorder-not otherwise specified) He is high functioning however, his abilities are "splintered". Aren's IQ is borderline and this is a result of his disability. It is not a fair assessment of his intelligence rather it shows how this disability can affect IQ testing scores. Aren can be quite clever about things on his agenda and has an extremely determined nature. He can be one tracked and has a difficult time taking 'no' for an answer. In fact, he can be relentless in his pursuit to getting what he wants. I do not cave in however, because as his mother, I know in the long run, this will not serve him well. I am Aren's number one advocate.
I am a mother, wife, daughter, sister, friend, and neighbor. I juggle the many sides of who I am. However, more energy is put into one aspect of my life over another at times. Some days, especially lately, it's challenging to find balance in my life. It's especially so having a child with special needs. It can be all consuming when not only must I raise my children (I have two) to become well balanced contributing members of society, I must fight tooth and nail with the school district to ensure my son receives a FAPE - free and appropriate education as it is defined by law. This is what this blog will be about; parenting a child with special needs. Through this live journal, I hope to provide insight and information for anyone who wants an inside view of what it's like having a child on the Autism Spectrum. I hope to offer a window to the hurdles parents must overcome advocating for a child's special education under adverse conditions. And, challenges many parents face navigating their way through the special education system.
In this journal, I will strive toward frequent posts. I will try to write daily if I have something to share. I think it's important to discuss these things because it might be helpful for other people experiencing similar challenges. Having a child with special needs in the public school system can be a daunting experience. There is so much parents must learn and understand so that they can be the best advocate for their child. It's exhausting work and a full-time job. Looking for resources and information feels like being stuck in the middle of the ocean with no buoy or life boat. It can be extremely overwhelming. Further, when parents enter the special education system, they usually don't enter it well armed with a plethora of information. In essence, they don't start out in a position of strength. Naively, they think, the school will guide us and provide the education their beloved child requires. It's an assumption that many parents make and in many instances, it is 100% incorrect. Schools are not in the business to lay out a rosy plan where your child will benefit to the fullest. In fact, often the opposite it true. So unless you understand what your child needs and how to get it, don't depend on the schools to provide or expect they'll lead you down the path of knowledge. It is not that simple.
It's important to provide a little background so you can get a better picture of my challenges and all the beautiful sides of my son. Aren is not just a person with special needs; he is someone who enjoys many things, has a zest for life and loves to laugh. Aren can find amusement in the simplest of things at times. His favorite subjects are Pokemon, dinosaurs and cars. Once Aren gets started on talking about Pokemon for instance, it's challenging to get him to change the subject. When he becomes disappointed about something, he can severely melt down and be explosive.
We are a multi-racial family formed through adoption. My daughter was born in China. My son is African American. My son has been with us since he was an infant. He was fussy in the beginning but was a sweet baby. He has developmental delays so I was able to get him started with early intervention. Basically, with early intervention, clinicians visit your child at home and provide services such as speech and physical therapies. My son needed both types of therapies.
When Aren aged out of early intervention, I enrolled him in a mainstream pre-k program. I thought after early intervention, my son was "good to go" although deep down inside, I had unanswered questions and concerns. Part of the ambivalence is the unwavering desire for everything to be 'ok' with your child. After only two weeks into the program, I was told my son couldn't remain without a "shadow" or one on one aide. My son was difficult to manage, didn't comply as the other children and would run out the door. I was crestfallen thinking my son was being kicked out of pre-school. I realized right there and then, I had to have him evaluated further for special education.
Since we weren't clear as to the nature of his challenges, we had Aren evaluated by a highly regarded pediatric neurologist, Martin Kutscher. Dr. Kutscher thought my son was showing symptoms of PDD-NOS, an autism spectrum disorder or ASD. Later on, due to behavioral issues at home, we sought a another opinion from a child psychiatrist. The opinion of the psyhchiatrist was that Aren was showing symptoms of PDD. So, now we had two professionals arriving at the same conclusion.
When Aren was approaching age 4, we decided to take him to yet another professional, this time a child psychologist. We needed to know for sure as if it wasn't enough to know our child was on the autism spectrum. Now, this doctor also said, PDD-NOS but wouldn't say or use the word Autism. However, to be very clear, PDD-NOS is an autism spectrum disorder.
That was the beginning of what would be a long journey of advocating for my son. We took our reports and entered our first special education meeting known as a CPSE = committee on preschool education. At the time, we were accompanined by our case manager who helped to advocate for Aren's placement. With the case manager's assistance, our first meeting was relatively seamless. Our son was approved for a pre-school special education placement and we were on our way. I want to point out that we lived in a different school district from where we are now. This is a very important piece to remember because as you'll find out later on, the school district where we live, is not being compliant when it comes to my son's IEP = individual education program.