Parenting the Adult Child on the Spectrum

For 18 years, I was my son’s number one person

His mentor, his advocate, his comfort and his home. I interpreted him when his speech was unintelligible, I fought for him when he was wrongly judged, I stayed up with him when anxiety had crippled him, and I closely, but quietly followed him when he decided, again, to run away. I left jobs that took me away from him, and I fought with my husband over countless things that we disagreed on, about him. I never missed a teacher meeting, IEP, therapy. It was all consuming, but it was without hesitation. This is all why it is so difficult to understand why I stopped. 

The day he graduated high school was one of the best days in my life.

It is up there with my children being born. My son had fought for so many years to graduate, so it was time to celebrate! But only for a short time, as his next hurdle was college. He had been told consistently by some misguided people that he would never be able to get into a 4-year university. To him, and me, this was just another chance to have a “we shall see moment” and he did. After successfully completing a year and a half at the local technical college, he was admitted into UW-Milwaukee. He received the letter of acceptance a day before Christmas, and revealed the news to the whole extended family at dinner. It was a poignant and emotional moment. This was two years ago. 

Sometime since that moment, I fell back. It is like I sat down that Christmas at dinner, and never stood up again. My focus shifted. Without meaning to I completely let go. Truth is, parenting a child on the spectrum is exhausting. I was tired. I think unconsciously I just wanted him to succeed without any intervention from me. I wanted to let go. Even though I knew, he would still need me.

“Act like the adult you are.”

Words I have said countless times lately when he’s acted irresponsible, obsessive, reactive, irrational, impulsive. All those words define a person with Aspergers. When he was a child, I had bad days. When I lacked the ability to be mature, and all I wanted to do is scream and yell “why can’t you be normal!!!” I had days when I allowed myself to feel sorry for myself. Those days happened, of course, they do to all of us. But back then, I would have never yelled at him for being himself, if I did then I would be no better than the bully on the playground.

I am exhausted.

That fatigue comes out in my words and my utter lack of patience. I had become the bully on the playground. I had lost my ability to look at him through the special set of glasses I had always looked at him through. I had lost the ability to understand him. It is incredibly difficult as a mother to see your child go through the peaks and valleys of adulthood. That feeling is intensified when the child has special needs. Those valleys are deeper, and they are harder to get out of. But, they can get out of them. They just need someone at the top to lend a hand.

Change is painful. Change is also absolute.

Things change without us wanting or asking, and when life changes and we are not ready for the way it looks it can take us off guard. That is where I have been the last few years. He is not going to wake up one day and be a neuro-typical person. I have always known this, but I am a momma and without knowing it, I unconsciously cured him of his Aspergers. Pretending this empathic, loving, kind, intelligent, and bright man that I know like the back of my hand had all of sudden just become an irresponsible, young adult. I played into the “invisible disease” syndrome. 

A fool I was, and I know it but perspective is everything. I can resolve this, and put myself back on track. I know there will be more times in the future that I may want to sit down, and maybe someday I actually will be able to. But until then I have got this big kid in my sight. I remember a line in one of our favorite Robert Munsch books when he was little:

I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be. ”

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One Response to Parenting the Adult Child on the Spectrum

  1. KD Dumont April 6, 2018 at 6:21 pm #

    I am so happy your son has made it this far so far. I can only imagine where his experience takes him next, with you helping him navigate this world as need be.

    My son went to UW-Waukesha because his h.s. counselor said he’d only survive a tech school, which made him doubt his ability. Waukesha is a pathway school so when he transferred to UW-Milwaukee, all his credits were to follow. Needless to say, Math and German did not. His least able to pass subjects needless to say. I learned it was still my job to help him navigate a place that only expects neuro typical students. It took us 6 years to get through all the requirements because they refused to acknowledge his ASD. It took us another 4 years before the assistant dean bypassed the foreign language requirements. He now has his undergraduate degree at 30.

    Working with DVR is another place I have to help him navigate through a program meant to help workers find jobs if injured or uses a medical device to manage. Every single counselor he has been assigned to, every single job coach assumes he should be fine with stuffing orders in a freezer setting. He has goals that they just can’t seem to understand.

    It’s amazing to me that I, too, say things that cannot change the way he thinks in this world. He’s an only child, so it scares me that there are no resources for him/us to “fall back” on. Thank you for sharing your experiences.

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