THANKS, MOM/THANKS, SON!

This was written for the “I Don’t Need a Cure Autism Flash Blog.” 

For those who “tweet,” please use these hashtags throughout the day on 4/2:

#idontneedacure, #WAAD

Here is a true story that illustrates how I am trying to raise my son to accept himself just as he is, and to make his own choices about how he might want to grow as a person. I was particularly moved to join the “I Don’t Need a Cure” gang because of having used these very words to my son (before hearing about the blog) just a few weeks ago:

My son G and I were hiking up a local, kid-friendly mountain with the rest of the Full Spectrums -- my Pardner and Z, my daughter. I noticed G’s extremely rosy red cheeks and I knew he was feeling drained.

I remembered having those same red cheeks. I remembered how, as a child, everything seemed harder for me – not just the social stuff (!), but physical stuff like biking or running. I would get very red and work very hard when other people just coasted along or put in a reasonable (non-grueling, -agonizing) effort...

I would try to tell grown-ups how hard I was trying, but they thought I was lazy or out of shape. I had what I now know was low muscle tone, and sensory processing differences that made it super-challenging for me to follow team play. I know it NOW because MY normal course of development resulted in higher, more “normal” muscle tone later in life, and I am now able to see very clearly that I truly was experiencing challenges on a different level than others. I think I am generally a “fit” person now, though team sports have remained out of my purview (perhaps that can be attributed to a complete lack of interest on my part).

I know many activities feel harder to my son than they do to most. While my nine-year old daughter virtually runs up the mountain without breaking a sweat, my 13 year-old son is as red as a beet, even though his general levels of fitness and activity are basically the same.

Perhaps the hardest thing for me as a child was feeling misunderstood. I’ve always accepted difference, even (mostly) in myself, but I’ve never been able to learn to countenance injustice. So I wanted to validate G’s experience, and help him feel understood, in part by sharing with him how he is “sometimes a lot like me as a kid.”

I told him that “Everything was harder for me, when I used to go on family bike rides or runs, or when – this was the worst! – my family would make me join in soccer games.”

I remembered how agonizing those times were – how exhausted I would be, how misunderstood and alien I would feel because I didn’t enjoy the “enjoyable” activities my family shared, and because I felt like they judged me for how I felt, both physically and emotionally…

“I would get super red cheeks, just like you do! I was kinda soft, and floppier and ganglier than I am now. I got stronger and stronger as I grew up. I think you will too.

“Growing up is a process, and everybody does it in their own way. I suspect that for you, like for me, it’ll take a little bit longer for some parts of your brain and body to get in their best shape.”

I explained that my red cheeks and difficulty keeping up came from low muscle tone, a physical difference sometimes associated with neurological differences that made all my muscles have to work harder. I added that it was tough for me growing up neurodivergent in a way that I don’t think it is for him because the people around him and understand and completely, unconditionally accept him.

I thought about how watching my child encounter similar experiences in a very different context has been healing for me, and how grateful I am to be able to show him some aspects of life as a happy, healthy, self-accepting (all relative terms of course!) neurodiverse adult.

We walked a little further in silence.

“Thanks for giving me asperger’s and low tone, mom,” he said, sounding sarcastic and resigned.

I took a deep breath. “Buddy…don’t you like me? Because I like myself. And I like you too – a lot! It’s not that I want you to be just like me, you are absolutely your own person. But the things that make me a little bit different make me who I am and it’s the same for you. You’ll grow up at your own pace.”

“Of course I like you, Mom,” he replied. “But I want to be strong.”

“If that’s what YOU want, you’ll have to work hard to be strong, maybe harder than other people. But you’ll get there,” I assured him. “I promise. You can do anything you set your mind to!

“And once you do get strong, you will never forget how it felt to try that hard and succeed. You’ll always feel compassion for people who are having a hard time and accept and understand people who are different. Those are really good things!

“I like us both just the way we are. We can grow, when we want to. We don’t need to be cured.”

Love,

Full Spectrum Mama

Tasteless Autism/Immunization Joke

Did you hear the one about the mother who suspected she was autistic and so did not immunize her son so he wouldn’t “get autistic” too…and then he turned out to have autism* despite not being immunized?

That one was about my son and me!

I mention this partly because life cracks me up and partly because my dear friend Rachel, a passionate and loving advocate around autism (here are just a few of her projects: http://www.autismandempathy.com/ and http://www.journeyswithautism.com/) has sometimes been vilified in “the autism community” for being pro-vaccination. It seems difference (here, of opinion) is sometimes unacceptable, even in a community of people who have differences from the neurotypical norm, or have family members with such differences…

Concerns around immunization have been a force since immunization programs began; likewise, immunization has had an enormous body of supporters and has unquestionably saved many, many lives. Although I was trained in graduate school to read statistics – even quite complex sets – I cannot say from looking at the numbers that I know with anywhere near 100% certainty what the right choice is for anyone else in the autism/immunization debate. 

Nor does our joke-embodied story prove anything beyond its own scope.

But I do know for sure that being intolerant of others’ opinions is unjust.

I also know that a good laugh is often the answer, even if it doesn’t solve the exact question in question.

Love,

Full Spectrum Mama

* …and to be the most wonderful son in the whole wide world, according to his Mama, Just As He Is.

Ancestry

Holidays can be a little bit tricky in a Full Spectrum household. Take Easter, please. The morning egg hunt presents huge problems when one child goes Machiavellian (strategy, speed, ruthlessness; goal: vanquishing cousins, sibling…result: victory) and one goes aspergian (general neural overload - candy, neural/visual/auditory overload – frolicking cousins, warp-speed sibling; goal: vague…result: paralysis, tears). (Please see self-explanatory Figures 1 and 2.) Ditto, Birthdays: think piñatas, favors &c.  We have adapted by focusing on the pre-filled Easter basket, the set number of packets – one for each child – in the piñata, and so forth.

                      Figure 1                                                                                            Figure 2

St. Patrick’s Day, too, has its potential pitfalls. Over oatmeal breakfast on that fateful day, I was sharing an uplifting story of how the children’s Scots great-grandfather would wear a button on his bum that read, “Kiss me, I’m Irish,” much to their Irish great-grandmother’s chagrin, when Z asked me, “Mama, am I Irish?”

[Censored!] I was completely tongue-tied. There was a long and (to me) somewhat uncomfortable silence. I’d’ve preferred to have been thinking about many other questions right then, including my ongoing internal debate over which is better as the face ages: the jowl-less wrinkles of your skinnier folk or the wrinkle-free jowls of the pleasantly plump?

Ahem. Since Z was adopted from China, I have a ready-made response for one of the hardest questions: “Why didn’t my birth mother keep me?” China’s one-child policy –for all its questionable aspects – offers the option of a simple answer to this complicated question: “Your birth Mama gave you up because she had to, since in China most couples are allowed only one child.”

But what about this question? Is Z Irish or not? Clearly she is not genetically Irish. But her maternal great-grandmother was fresh off the boat from Ireland. Pardner, G and I are all genetically part-Irish. As I sat there, mouth agape, Pardner (Thank you universe for Pardner! Thank you! Thank you!) came to the rescue, assuring her in a strong brogue that, “Everyone’s Irish on St. Paddy’s Day!”

“Good,” she said, “because the leprechauns are going to come to our school this weekend and turn everybody’s chairs over.”

Oh.

Walking into school several weeks after St. Patrick’s Day, Z asked me, “Mama, if we can have ancestors…can we also have ‘anbrothers?’” After I stopped laughing and, frankly, bragging to everyone I ran into over the next few hours about how funny Z is, it hit me that she is still thinking about ancestry a great deal.

Maybe all those Easter eggs – and all those other material, tangible, often-edible (and sometimes eaten even when not-edible) things -- feel vitally important to a little girl who’s not quite sure what’s inside herself.

Next year I am just going to say, “Yes. Yes, you are Irish baby. Because you are mine.”

Love and leprechauns,

Full Spectrum Mama