“I seek strength, not to be greater than other, but to fight my greatest enemy, the doubts within myself” – P.C. Cast
Yes, I know that many people struggle with self doubt. To quash my self-doubt, I am giving you the top reasons (in my mind) why I have no business writing about raising a child with Asperger’s.
1. Occasionally, my son yells obscenities at me – Daniel’s meltdowns are loud and painful. There are times when it is hard to know if he is having a meltdown or a teenage tantrum.
Like any teenager, Daniel wants the freedom and autonomy of an adult. However, there is an atypically large gap between what he is capable of handling and what his desired autonomy and freedom would require him to handle. He can see this and it makes him angry and sometimes depressed. If I try to help him in my traditionally “Mommy” way, he becomes angry at me. This catch 22 is painful for both of us.
We are learning what is a meltdown and what is a tantrum. Instead of being “Mommy” to him in an effort to prevent any failure, I am learning to give him space to grow.
2. My son’s IEP is constantly having to be updated and improved – I read a story by a fellow Aspie-parent. She described how at 13, her son was able to leave the IEP process and accommodations. He had come so far that they were no longer needed. I used to see that as a goal. I thought, somehow, I could be smart enough, work hard enough, be consistent enough, or just BE enough that my son would… leap over obstacles and soar academically!
Well, at the least, I had always hoped that eventually, we would find THE WAY at school. We would come up with just the right mix of accommodations and talented staff and Daniel would take off! The reality has been much less idealistic. The IEP is an organic process cased in a form. It requires regular updates, revisions, interactions, and work. It is an exhausting process.
We have not given up. I am also learning to redefine my definitions of success. My recent shift in paradigm have reduced my emotional turmoil at the process.
3. My son is on medication – Sometimes, I see my son’s medication as a triumph. It has helped him make huge strides in school. Sometimes, it feels like a failure of me as a mother. It feels like I didn’t get him the right interventions early enough or I didn’t research enough to find an early solution that would have circumvented the need for medication. Trying medication was a huge decision for our family. Nothing has been a magic bullet for us but medication has paid off for our family and, more importantly, for my son.
4. I don’t know the ending to my own story – I love reading stories about families that have succeeded. The nicely, wrapped up with a bow, kind of stories where at the end there is a happily-ever-after feeling. The stories where the kid went on to an Ivy League school or changed some aspect of the world forever through their atypical, outside-the-box, thinking. Or the story of the autistic child, now 22, who is beloved to the kids at the school where he works.
I don’t know the ending to our story. There are no guarantees that Daniel will be ok. As a mother, this is a painful experience. I may do the best job possible and it still might hurt.
The lesson to me is in the why behind what I do. I do what I am doing because of who I am, not because I have any guarantee of the outcome. I believe that showing up, every day, with integrity is the only way to live without regret.
5. I do not have a degree – I never finished college. Everything you will read here, I learned outside a classroom. I read, I research, I think, and I try. I am not a trained expert but I am the expert when it comes to Daniel. Every parent must be the expert when it comes to their own child. Being the expert doesn’t always mean I always have the answer. Being the expert means that I make it my business to understand my son as well as possible. Doing so makes me an effective advocate. When I walk into the school or the doctor, I am not the educational expert or the medical expert, but I am the Daniel expert.
People are always looking for the single magic bullet that will totally change everything. There is no single magic bullet. – Temple Grandin