Mom or Therapist?
Having children with disabilities can sometimes mean that you find yourself torn between being the mom you want to be and the “therapist, speech path, psychologist” that you feel you need to be. I find myself struggling to find the balance between seeing my child for who they are and being content with that and seeing all the things we need to work on. Most recently, I was feeling a bit exasperated at my middle son. He has developed a new fixation which has me feeling like we had stepped backwards. Over the years he has obsessed over Star Wars, Avengers, Transformers, Journey to the Center of the Earth, and The Silver Surfer among others.
If you have a child on the spectrum you very well may know when I say obsession, I mean an all-encompassing passion. He can recite and will, for your benefit even if you are not paying attention, factoids about even the most mundane of pieces of trivia. He will watch You Tube clips, search out toys, and script (for those of you new to this, it means recite verbatim parts of a movie, TV shows, etc.), for hours at a time.
The newest obsession is Power Rangers. The silver lining to this new obsession is he is now happy to do Tae Kwan Do again. To me, it feels a bit like it is targeted at children much younger than the almost 11 year old he is. Trying to be a good mother and help him understand the social implications of his new passion, I showed him the suggested ages on the toys. I talked about how other children might think it was weird and he should try to just play power rangers at home. Each effort was met with the compulsory, “okay mom”.
After a few days he finally turned to me and said, “Mom I know, but you can’t change who I am”. I responded that I would never want to change who he is, I just want him to have all the information to make good choices. That being said, it was a nice gentle reminder to back off.
Too often I feel the tug of that very idea. I do not want to change who he is; I just want to help him be the best man he can be. I want to be the Mom, not the therapist. I know he will only be 10 for a short time, soon he will be 21 and before I know it, I will be watching him make his way in the all too real adult world. I want – no need him; to be ready to be part of a world that may not always see what is wonderful about him. Knowing that, I feel the pressure to help him figure out how to fit his square peg into that “round hole of life”; the tug to help him be courageous and confident enough to know he is perfect the way he is. The mom part of me revels in all his “fantasticness”. The part of me that feels like a therapist, feels this constant pressure to create those meaningful gains that change his behaviour.
When it comes to the children our agency team supports I feel that very point resonating for all the future adults we see. How do I help them to see what amazing, unique and wonderful people they are and still help them understand that to live in this world, we all must adapt to be part of a group. That the saying “be yourself” really means “be yourself, only as far as it does not make others uncomfortable”. I want to help them see that what is amazing about them may not be well understood in their adolescence. In fact it may the case that not ever will it be well understood in their lifetime. I think of amazing figures in history such as Edgar Allan Poe and Vincent Van Gough. They were not well understood until after their death. What was brilliant and amazing about remained unappreciated till after they were gone.
Every parent hopes to arm their children with the skills they need for adulthood; preparing their child to live in the world successfully. The challenge for parents of children with disabilities is asking our children to be a “little different than who they are” when the whole world is chanting “be yourself”. I want to cry out for the world to accept our kids just as they are; to tell our kids “change for no one”. Yet I know the reality is I have changed parts of myself to be part of my workplace, made adjustments for my groups of friends etc. We all have changed a little, compromised for the sake of a relationship.
I will keep trying to strike that balance between mom and therapist. I will try to walk the fine line between encouraging my son to be himself and yet reminding him he needs to monitor himself to be part of a group. I will move forward daily hoping that, if I make choices consciously it will be enough, and mostly I will move forward hoping that he knows just how much he is loved.
Lori Litke, July 2014Tags: children, community, disabilities, family, identity, parenting, parents of disabled children