Musings of a Marfan Mom

A Confession


This weekend we had the opportunity to go to a couple of birthday parties. I have such mixed feelings on birthday parties…a hang up I realize is totally my own.

The Menininho has made countless strides over the past 2 years since his autism diagnosis. His speech is nearly on par with other kids his age, he’s able to handle situations now that he couldn’t have 6 months ago, he is engaging in imaginative play. It’s amazing how far he has come from the toddler who would spend 45 minutes walking counter clockwise around the kitchen table and not responding to anything!

But, when we go to birthday parties, M keeps to himself. And while HE is perfectly happy, it makes me a little sad.

For example, Saturday was the birthday party of a classmate from last year. Immediately M made a beeline for a room in the house away from everyone else. It was just too loud and crowded for him. M happily played with the toys in that room for most of the party. When we went outside, he stayed away from the other children. If they were at the sand table, he was in the bouncy house. If they came in the bouncy house, he took the toy lawn mower for a spin.

As I’m sitting there watching him, I’m alternating between bursting with pride at how happy he is (a year ago he would have been picking mulch) and feeling sad that he isn’t playing with the other children and that the noise still bothers him so much (Though hey! He’s able to self-regulate by going to another room!). And then I feel guilty for feeling sad. But then I think, well, isn’t it natural to want your children to play well with others? And the skills used in playing are also important for navigating other chapters in life, like getting and keeping a job.

This internal battle brought me to the question, how do you straddle the fine line between accepting your children for who they are and wanting to help them develop the skills they need to be the most successful version of themselves? I respect the autism self-advocates that say autism is nothing to be “fixed” and I agree; there is nothing wrong with my son. At the same time, there are aspects of autism that make his life difficult and as a mother, I can’t sit back and not try to help mitigate those.

Is it the mark of a better mother to just let your child be happy for now, or to try to help him learn to get along with the other kids? When do you stop the latter for the former? When do you stop the therapy and just accept and enjoy? Or can you accept and enjoy while still working towards change? I’d like to think you can.

For now, I’ll keep trying to find the balance.
toddler playing alone

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  1. give him 6 more months…..


  2. That feeling of wanting your child to be “normal” and play like other children his age is completely valid. Anyone with a special needs child, or children, feels that way. Because frankly, when you see these other children everything seems to come so easily. It can only make your day to day struggles seem that much harder. But, here’s the secret. There is no such thing as normal. Yes, it appears all the other children are doing this and that, but on closer look are they really?

    Special needs parenting often means that the challenges your child faces are obvious. But all families have challenges. We don’t know if a child’s parents are about to get a divorce, if their family income has been crushed by the economy, if a devastating illness is gripping their grandparents or if a child is facing an anxiety disorder. Nor do we need to know all that. The fact is everyone has something that has them worried.

    Your son is getting better. You know this. He proves it every day. Will he need interpersonal skills to get a good job later in life, yes, and your fears for him are valid. But, well, unless the labour laws have changed he isn’t going to be looking for a job for a few years yet. Give him time. Give yourself time. Things probably will change. There is a place in this world for your son – he just needs time to find it.

    It’s important for parents of special needs children to give voice to their frustrations, anger, jealousy and exhaustion. This is a hard gig and repressing those feelings does no one any good. But in the end, there is only one true measure of your success as a parent – your child. Was your child happy at this birthday party? Did he find a way to make it work for everyone? Did he smile and laugh and play? If so, lets call it a win.

    Never lose sight of all the therapies and opportunities to help him manage and perhaps improve his diagnosis. But in the middle of all that, don’t forget to equally cherish the child you have. I know that you do. This blog shows how much you honour and value both your children. Remember, they don’t necessarily need you to be another doctor – they need you to be their mom. And you are great at it.

    PS – I’m equally guilty of looking longingly at other “children” and feeling the same way. Perhaps that’s why this speech may seem a bit rehearsed. I have to give it to myself from time to time to time. Doubt is part of parenting. But my kids don’t doubt that I love them, and neither do yours. Perhaps we should take our cues from them.


    marfmom Reply:

    Amen. I’ll remind you if you keep reminding me, ok? :-)


  3. Oh we are so not alone in this world! It seems we had similar weeks. Glad to know I am not the only one who struggles with the upbeat now and again.


  4. I can really relate to this internal struggle, Maya. I talked with Jaymz at length about this piece and we agreed that it’s so tough to know where the line is between accepting our kids for who they are and trying to give them the tools to function at their best in the world.

    I definitely (and often) find myself feeling the extremes of pride and excitement in Daniel’s progress along with sadness (and longing for change) at seeing how afraid he is of other children and how much stress “normal” social activities put on him. None of us wants our kid to have to struggle, you know?

    All that to say: I feel it. I’m there, too.


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