My oldest son, Jacob, turns five years old today, September 10. I remember looking at him while he warmed up in the incubator just minutes after he was born and, while holding his tightly curled fingers, said to him “Happy birthday, Jacob!”
I knew things would never be quite the same — now I was responsible for some else’s life and welfare, not just my own. I was excited, scared and emotionally overwhelmed at the presence of this little spirit in my midst.
Little did we know then what we would be dealing with now. That being said, he is as much a joy now as he was then, despite the unexpected challenges we will overcome — they key word being “will.” To paraphrase a famous saying, “failure is not an option.”
In addition to the medical and developmental challenges, another challenge we will overcome is the inability, or at least the reluctance, of our school district (Saugus Union) to provide the most beneficial “free and appropriate” special education services to which he is entitled a person protected by the Individuals with Disabilities Education Act (IDEA).
Initially we had to fight with the district because they wanted to place him in a special day program kindergarten program with the vague promise of “mainstreaming” him for short periods in the day. “Unacceptable,” we said, “Jacob needs to be in a typical setting with the help of an aide and he definitely is not ready for kindergarten.”
Eventually, after significant wrangling, the district agreed to place Jacob in the quasi-independent “Fun for Fours” pre-school program with the intent of focusing on his social development. However, we had to compromise on the aid, and instead of him receiving direct assistance from a dedicated aide, he will split one aide with three other students.
Although the environment is a positive one, we are very concerned that he is not getting the personal guidance and attention that he needs to develop. Over the summer he benefited immensely from a one-on-one aide, one of his ABA therapists from CARD (Center for Autism and Related Disorders), who joined him for six weeks of a summer school program. Near the end of the six weeks Jacob was starting to initiate interaction with his peers — something he has never done before.
We now find ourselves at an important crossroads. We feel this is a “make or break” year for Jacob’s social development and are committed to getting him the resources he needs and the opportunities to which he is entitled. After numerous attempts on our own behalf to get the district to give Jacob a one-on-one aide we have realized, regardless of whether they are sincere or not, it won’t happen without a fight.
After initially considering a special education lawyer who, though vastly successful, bills in $5,000 retainer installments, we were referred to an absolutely impressive special education advocate, Melonie T. Matjeka of a group called “Empowered Parents.” Fortunately for us, she is significantly more affordable, but no less effective — we almost literally signed over our entire economic stimulus check to her.
Thanks for helping us help our son, Internal Revenue Service!