Because it’s not just Aspergers…
School always highlights the struggles of having a high functioning child. Daniel seems pretty normal. Maybe I am just saying that because I am his mother and around him all the time and so he seems normal to me. However, teachers, neighbors, etc. all act surprised when they find he has Aspergers.
When I sit down at the IEP, there seems a desire by everyone in the room to address each aspect of Daniel as a stand-alone issue.
He has Aspergers – OT, Social Skills, an understanding about meltdowns.
He has ADD – Scheduling, prompting, reminders
He has Dyslexia – Disidentic, primarily – We will work on phonics, decoding, and repetitious practicing.
He has processing issues
He has memory issues
He has Executive functioning struggles.
Slowly it begins to feel clinical. It feels like they don’t see Daniel just boxes to check off that may or may not translate into any real activity tomorrow.
Tomorrow always comes. The day-to-day reality of moving through the activities and tasks of the day hits hard. Daniel struggles. All the beautifully checked boxes don’t translate in the organic messiness of everyday life.
Daniel forgets his materials, leaves homework in his locker and starts to wear down with the constant effort. There are confrontations about why he didn’t remember for the 1,000th time. The teacher is frustrated. Daniel is frustrated. Tempers flare. Daniel’s temper usually flares first and brightest. He melts down, overwhelmed by the need to multi-task. His meltdowns are expressed as a rush of angry language. I get a note about Daniel being disrespectful in class. Daniel starts to lie to avoid the confrontations. I get notes about his lying. The tone of interaction with the school shifts from a child with needs to a child with behavioral issues. Accommodations fall by the wayside as they rush to address the glaring issue of Daniel’s attitude.
It isn’t just Asperger’s. It isn’t just Dyslexia. It isn’t just ADD. It isn’t just 14 year-old-boy. It is Daniel. He is hurting and struggling. He is anxious and depressed.
I talk to the teacher about what I see as an underlying issues. I talk about the fact that the accommodations are not being given consistently. The solutions for his executive functioning issues are not working. “Are they a good fit?” I ask.
The response is always the same. We can’t help Daniel if he is going to push us away by being so disrespectful and lying. I feel like we are always talking at cross-purposes. They implement what they know but when it doesn’t work, it is the child, not the process.
I stand in the middle. I understand that some of Daniel’s struggles are simply 14 year-old-boy. He would rather play video games than read. He wants to put off for tomorrow what he should do today. His coping mechanism are unacceptable.
However, I also know that the situation is aggravated by the fact that what he should do today is miserably difficult for him. He spends 7 hours a day trying to do what is most difficult for him and then being told he is failing. He walks the halls of a place that is still fairly new to him. He is a tall, skinny, red-head, with a severe over-bite and an awkward manner. He is made fun of by some of the kids, some of the girls in particular. No one notices the graphic novel he is writing. No one sees the involved story line he has created. He is only appreciated for his failures. I believe him when he says that his life is hell.
I am yelled at by my son and dismissed by the school.
Daniel’s reading progress is supposed to be tested weekly. The school has yet to test his reading once this year. I take him to The Reading Group once a week because it will take too long to get the school to comply.I am glad because I get additional insight from the therapist at The Reading Group.
I take him to his doctor to discuss any additional therapies that may help him. I take him to the Orthodontist.
I work overtime to re-write his IEP. There is no one out there that can tell a parent what to expect on an IEP. I am slowly building a network of information and help. My goal is to get him into a school that will give him adequate support, on the district’s dime. Those schools cost $40-$60K a year and as such are cost prohibitive for my family.
Most of all, I love Daniel. I have to believe that love and the intentions that come from that love will have some impact. I believe that the love I have for him will shield him from some of the consequences of the mistakes. Mistakes that I know I make as I stumble through the daily decisions of raising him. I tell him I love him. I love him as he screams at me. I love him when he shines in his unique way.
From that love, I hope. I hope that he will learn effective ways of interacting with the world he has been born into. I hope that he will find his way of showing the world his unique talents. I hope that something will click for him today. Most of all, I hope that there is truth in the saying, “Love covers a multitude of sins.”