We went out the other night to a relaxed screening of “Mamma Mia 2: Here We Go Again”. It was in a little arts centre in our town. The evening was co-sponsored by Guideposts, a regional organisation that works toward “a society where all people are valued and have equality of opportunity.”
Our 14-year old met a friend there from our local “FASD Club” (this is what the kids call their get-togethers while we parents drink coffee and chat in the local support group that we started after our son’s diagnosis). She also goes to his specialist school. My husband and I enjoyed the chance to spend a bit of time talking with her mum and some good friends who help run the arts centre.
We were welcomed as we entered by another friend of the family, a young autistic adult who was the most relaxed we have ever seen him. He introduced us to one of his friends, an older adult with additional needs.
As the sing-a-long show progressed, some of the young people got up and danced. Our son and his friend chowed their way through a cup full of sweets, popcorn and chicken and chips from a local shop. They were laughing and giggling, paying half-attention to the movie and the other half to each other. It was sweet.
I loved one of the songs:
“I have a dream, a song to sing
To help me cope with anything
If you see the wonder of a fairy tale
You can take the future even if you fail…”
“I have a dream, a fantasy
To help me through reality
And my destination makes it worth the while
Pushing through the darkness still another mile”
At 8:00 our son kind of suddenly showed me his phone and said he was tired, that he wanted to go home. To be fair, he had been in bed before we went out at 6:30 (he often goes to bed early, I think because he uses up so much mental energy in a day). Part of the negotiation in agreeing to go out was that if he told us he needed to go home, we would.
Even though the movie was just hitting the best parts, even though my husband and I both were enjoying the social aspect of being out among friends, we left. We congratulated our son on telling us he was ready to leave. We didn’t feel guilty, we were for once in an environment where others understood that we needed to head out. No questions asked. As soon as we got home, our son got into bed, turned off the lights, blasted his music and entered into his pre-sleep zone. Happy.
Once upon a time I was scared for our suggestible son to be around others with communication difficulties. When he was little, the one person he had most problems with was a child who was nearly non-verbal at an after-school club. He simply could not understand why she could not speak in a way he understood. It escalated him. She used only strong language and he mimicked it. He was used to others over-compensating for his own lack of communication skills. He couldn’t interact with her in any kind of positive way. We thought this would be what would happen if he went to a specialist school. He has always been very verbal, even if his understanding often lags behind the words.
But in reality, what happened after we moved him to a specialist school was that his whole being relaxed. This also coincided with – at the suggestion of the school and other professionals involved – giving him more freedom to dress as he likes and to let his hair grow long, acknowledging his gender non-conformity. Our son who was anxious and misunderstood for most of his life eventually, after an adjustment period, lost all those pressures to conform that had been guiding his every day. And those challenging behaviours that grew out of self-preservation started to melt away as his self-confidence grew.
Last Friday night was a vividly wonderful example of the positive ways our creating space for and opening up to the world about our son’s uniqueness has brought him and us joy and support.
There, in that room, was a beautiful future, a vision of life surrounded by friends and supportive people. The laughter and smiles on our son’s face as he was interacting with his friend filled my soul with hope. Seeing that he had role models of adults like him in that room, knowing that there were support people nearby and hopefully would be when in some very distant day that I am no longer here for him, that was exactly what I needed to see. Knowing that some of the adults in the room – community leaders – understand FASD because we have over the years given them the information that they need was also gratifying. The night was good for me too.
Many parents of children with FASD feel fear for the future. I realised at some point a while ago that my fear of his vulnerability was driving too much of his life. I had to stand down. My hypervigilance wasn’t helping. It’s a work in progress, but as he has accessed more support and as we as a family have learned more about appropriate strategies things have become easier. Much easier, if not ‘easy.’
Someone said it simply, “He is growing up.”
His is not the same trajectory other kids might typically take. But once we let go of the way society defines our son’s stages and ages, we were able to see just how little that matters.
He is relatively happy.
He is growing.
He is becoming better able to express his needs and to advocate for himself with words not actions.
He is learning to control his impulses.
He is feeling more secure, less anxious.
He has friends at school who are like him so he isn’t in a constant state of confusion, trying to understand social situations that were way above his head.
He has other friends locally who know about his FASD, whose parents know about his FASD and who also know about and celebrate his considerable strengths.
He has compassion. He is strong. He knows love.
As a mum, I wish my fear had not kept me focused for so many years on trying to help him ‘fit in’ rather than putting my energies sooner into finding him places where he could ‘be’.
If you could have seen that singing, dancing room full of happy young people and adults you too would have felt a sense of great hope.
For all those families in the midst of hard times, please don’t give up on the hope.