Tick, Tick, Tick… goes the time passing on the kitchen clock…
Click, click, click… is quietly added, as my fingers fly over the keyboard of my computer.
H is at a birthday party. It is for The Lovely S – and part of me is so proud that he is there and so grateful to this wonderful girl that she invites H to her party each year. They are both 13 now, so I suspect these parties will soon be coming to an end: if not this year… then very soon.
Earlier in the day the anxiety from H almost crackled in the air as we got the present and card wrapped and ready. I gave him a pack of gum for his pocket… gum is calming. Now, I reflect, I should have kept a piece for myself.
I gave him a bright blue paper with our number and my cell number – also for his pocket. I tried to review some skills for interacting with peers, quickly one last time, as we were in the car. A brittle balance – treading carefully – not wanting to raise his anxiety, or have him frustrated with me… but rather, hoping to remind him of some of his most recent aha moments so that these skills could be brought with him to the party.
Perhaps we were both faking it… or maybe it was mostly me.
The time ticks by – I have not received a call…
Every moment – I am full of hope and full of this anxious feeling that things will go well for him. I wanted to stay – to offer to help – but at 13, that is just awkward. It also transmits my own concern to H in a way that I don’t think is particularly helpful. How can H be confident if he has to deal with my anxiety and the embarrassment of a hovering mother?
And too… there reaches a point when my staying at the birthday ‘to help out’ is like a red flashing light for H’s peers that only highlights his differences and makes interaction more challenging. It is one thing to have your mom stay at 6, or even 10, but quite another at age 13.
H revealed that he understands the social awkwardness of this as well. As we drove up to The Lovely S’s house he asked, “Mom, are you coming to the party too?”
“No, I don’t think that is necessary… but you can call me if you need to…”
He was visibly relieved, “Oh, that’s good!”
I have to trust. I need to trust. I feel guilty that it is difficult. I feel like a liar…
Trepidation… Aaaack! I resist the urge to call… to check…
My chest is tight…
Most of the time I think my kid is doing so well, and he is! Then there are these moments when I am faced with the fear driven glimpse of the possibility that my child will always be on the periphery, misunderstood and socially isolated. During these moments it is a forward-thinking all-encompassing fear… and sometimes I wish I had more trust for what the future might hold for my boy.
Right now as these two hours click and tick slowly by… I am uncomfortable, anxious, worried, and ashamed that I do not have more faith in this moment… in these two hours.
I know that when I pick up H I will be sunshine… and positive… and smiles – because that is what is useful. I will put aside my disquiet because these feelings are mine, and I need to own them… but I do not need dangle them in front of me always or in front of my child. I do not need my not knowing the future fear to act as a lens through which I view all things. I think that might be almost immobilizing.
This is not the first time I have reflected that there are times when my internal and external worlds are not a match. I’m trying to unravel this sense of discomfort from what it is my son needs. My feelings are intertwined with my own perspective and I need to move cautiously – because the value of his experiences cannot fully be measured from my non Autistic perspective.
I suppose this is a practice session for me: a microcosm of things to come.
And I find myself noticing the recurring theme and that the phrase one-step-at a time is indeed my mantra…
And, as well, my disquiet reminds me that if I want the world to be a better match for H, and others like him, there is work to be done…
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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism, (2012)
Thirty Days of Autism 
My son has Down Syndrome, not autism, but the anxiety and fears are in my heart as well. You captured my feelings perfectly. I thank you, too, for reminding me that I need to stay sane to keep him sane.
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Mary, I can imagine that your experiences and feelings are similar with your boy. We are not on an easy path… Thank you for sharing that you were able to relate to this post.
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I feel your pain literally. I have a son who is 15 and it doesn’t go away…any of it. His social world is so small and it gets smaller as his male friends get older and move onto things like girls and being cool…things my son doesn’t want…at least right now. Thank heavens for the Lovely S!
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Thanks Marlene… These are difficult issues. I see the gap widening with H and his peers as well. He is lucky to have a good friend with Aspergers, which we find is particularly important for him and his image of himself. And yes, thanks heavens for The Lovely S, and others like her.
I try to remember that maturity is the friend of our guys: https://30daysofautism.wordpress.com/2011/07/26/michelle-garcia-winner-and-amazing-social-thinking-strategies-i-%E2%9D%A4-this-stuff/
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I can totally relate to everything you said. That is exactly how I feel so often when my son is somewhere without me. Luckily, since he’s 5 I don’t have to endure it quite so often yet. It is so hard to be happy and positive and all the things you described for their sake, when inside you are completely terrified.
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Thanks… Luckily too… although it can be intense, these are mostly just fleeting times. We may not be on an easy path, but we are on a positive one, and we are on the path together.
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How did he do? I hope it went great. I imagine that the teen years are a learning curve all over again for the whole family. He’s lucky to have such a connected mom!
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You know what? He did awesome! H bounced into the car all happy and excited – and left me feeling somewhat foolish for all my worry. The Lovely S has a whole pack of brothers and I think their household just accepts H for who he is in the moment, and he just slips into the fray. They also honour how much The Lovely S cares for him. They are a wonderful family raising an exceptionally supportive child.
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It’s hard to live with what we can’t control (or anticipate), especially when we know it could have negative effects. I don’t think your (immediate) worries are so much to do with not trusting H, as not being able to be sure that a situation will occur that he hasn’t yet learned to cope with.
But this is what I think you CAN trust: your relationship with H. I think it’s pretty clear that he gains a lot from your love, support and guidance. If he does have a bad experience, I think you can trust that he will get the comfort and reassurance he needs from you. I know this doesn’t help the pain you feel if he has a bad experience and if his confidence is dented, but it would be impossible to avoid a bad experience ever. I don’t think you need to worry that you won’t be able to help him bounce back.
I can understand that it must be so hard to worry about your child’s future. I have had students like that. They’ll improve, and we’ll celebrate because those improvements were hard won, but they are such small improvements compared to the other students. I’d worry how they’ll cope in high school without the hand-holding of primary school. I’d worry how they’ll cope as an adult without the structure of high school. I’d worry how they’ll support themselves. Even if I was doing everything I could and there was truly nothing more I could do, I worried it wasn’t enough. It must be ten times worse as a parent.
(I just mean to say that your feelings are understandable. I could say all the reasons I think H has a pretty good chance of coping just fine, but sometimes you just want your feelings to be heard, rather than have people try to make them go away.)
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Sometimes I read a comment and have something insightful or even something witty and clever to add. I have nothing I can add to this… except that now I seem to need a kleenex to dry my tears. I mean that in a good way – because you have nailed it! You understand completely.
Thank you as well for the way you are always so encouraging! I appreciate it – and so will others who are reading this 🙂
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Oh wow! I feel this exact way with my 14 year old daughter. I often think if I could just make her small again where I can protect her from all the negative. Dropping her off at the movies with friends, parties, or even school functions absolutely sends me into all these same feelings. Thanks so much for sharing, great to know that I’m not the only one thinking these thoughts.
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Yes! I couldn’t agree more. One day at a time…one day at a time…It’s so hard, though, isn’t it? Especially since lately all I can think about is what comes next. It’s not getting any easier. The older they get, the greater the challenges. I know that our sons will rise above–if we’re brave enough to let them.
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Oh, wow, this is so good. So did it turn out okay?
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Yes… it was great! And I was left feeling relieved and slightly foolish for my worry! I like it when that happens…
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I am a Grandmother raising mentally disabled children, and understand completely your trepidation over leaving your child at a birthday party. Sadly, I don’t have such nice neighbours, and due to my grandchildren’s challenges, they are omitted from parties. Please feel free to read about our struggles with mental health at. http://www.challengedhope.wordpress.com.
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