I was dreading the IEP meeting. I admit, I don’t know much about the process. My son was diagnosed with autism in April 2010. Today, was only the second of these meetings I’ve been through since my son’s diagnosis. But I knew that, as a parent, this meeting was important. I had a say in whether the school district and, in my state, a “regional center”, was offering to fund enough time and type of services to meet his needs. The goal is to get him integrated into a regular school class. The key word here is fund.
Therapy is expensive. The Early Intensive Behavioral Therapy program, which my son is currently receiving at 40 hours a week, averages a cost of $8,000-$10,000 per month. Yes, that was not a typo. Speech therapy/social skills class is about $700 per month for 2 hours a week. One hour of Occupational Therapy (OT) per week for sensory processing issues is $411 per month. Total price tag per month: $9,111 to $11,111 per month. What has health insurance has paid to date? Nothing. (That’s another story. We have insurance. It hasn’t paid).
Going into the IEP is tricky. As a parent, I am asked what progress I see my child making. I must walk a fine line. I must convey that I see progress but not enough to warrant discontinuing any services. So, I must provide concrete examples of the progress and my son’s inabilities. The good and the not-so-good. Then, I must listen to everyone around the table discuss my son’s progress and what they see that he needs based on his “lack of ability”. This is a very difficult thing to sit through for any parent. I’m no different. It leaves me feeling concerned about my son’s future.
I’m just a mom still trying to understand my son’s autism. I only realized it was part of my son’s life about 9 months ago. I’m trying to do the best for him. But it is a confusing road, and I do not know where it leads. I didn’t even know what autism was when he was diagnosed less than a year ago. Yet the people who defer to me to “accept” or “reject” the proposed services are therapists and educators with years of training in their fields. (The educators have concerns with budget cuts, which have nothing to do with my son’s disability and render their opinions less meaningful to me.)
Now, I’m expected to consider the results of assessment and reports by experts as they apply to my child. I am presumed to understand the purpose of “programs” run by behavior experts and how they will help my son. It is an unwritten assumption that I will resolve differences in progress reported from different providers. Ultimately, along with all this stuff, I am supposed to determine which path I should choose to give my son the best chance he has for success. Then, I’m supposed to make sure all these expert educators and therapists implement my determination to give my son his best chance at his future.
Forget that some of these school district personnel have extremely limited experience with autism. Forget the fact that no one even knows what causes autism yet. Forget that each child diagnosed with autism manifests it differently. That’s why it’s called Autism Spectrum Disorder. Autism is a spectrum of impairment in social and neurological function manifested in multiple ways. It includes difficulties in communication and social skills and often accompanied by other disabilities, such as sensory processing disorder (SPD) which includes such things as sensitivities to light, sound, texture, proprioception and others.
My son has autism and SPD. He can type and use a touchpad or mouse to read websites, click links, and play video games on line. But no one can explain why he has trouble holding a crayon or drawing a picture. They will tell me how sometimes this or that can interfere but no one knows for sure. He can use a full sentence but often does not. He engages in a lot of self-talk, humming and nonsense but no one tells me why or what that means.
What I do know is that I never feel like I know enough. I’m never really certain if what I fight for and win, will ultimately improve my son’s life. Is there a better way, or more therapy, more anything that will give him another edge? Or because he is so young, is it too much already? Is it just right? Is there something I’m missing? Should I seek more?
For all these questions, I have to use my mommy instincts. To hone those instincts, I spend time looking for answers on line. Researching the best avenues for my son. But mostly, I depend upon others who are trained to help my son. They have. But I feel guilty for not immersing myself more, in books and papers and understanding theories and making really, really informed decisions. So many mothers out there know so much more than me.
School districts all over the country are facing budget cuts. State funded programs face serious setbacks. But I am very lucky. I’m a lawyer and the school district knows it. And even though I’ve never handled a case dealing with the Education Code or special needs before, now I have the most important case of my life. And the school district knows that as well.
And so I come away from the IEP meeting with a pronouncement that all my son’s services will be continued until his annual IEP meeting in the fall. I am very grateful. I’m also a little surprised.
I feel a little guilty that I will continue to receive these services while others are struggling to get them in the first place or struggling to retain them. It’s sad to know that because of budget cuts, an innocent child who needs help could lose it, or never receive it at all. I pray for each of these children. And I thank God my son continues to be given the chance that all children like him deserve.