It finally happened.   I’ve been waiting for it for some time now, quite comfortable with putting it off, and not completely understanding why.  It was Monday when he asked.  The question , which was technically more of a statement came from Henry  – “Elliott has autism, but not Ada & I” hung there for a while, maybe a few seconds too long, before I could speak.

In some ways, I am surprised he has not pressed harder for information.  Yes, he’s processed his brother’s diagnosis in chunks over the years, and occasionally has made a passing comment about Ada, but to be fair, we have just sort of waited for this to happen.

I remember talking with some peers several years ago – discussing when and how to talk about their siblings’ autism with our typically developing kids.  Henry was not even 1 when Elliott was diagnosed, so he’s just grown up with “big friends” around all the time, and frankly, is only now realizing that not every family lives that way.  That said, at the time, many of my peers had done the sit down chat with their kids, and were surprised I had not.  Just before he was 5, we did the sit-down.  I launched into my “everyone has strengths and challenges” chat, and he was silent.  I finished with “and sometimes when Elliott has a hard time with elevators, or it might feel like he does not listen to you – those things have a name”.  I paused, let him process for a minute, and then asked him, do you have any questions for me.  He looked up and said, without hesitation, “I want a snack”.

Nope, he was not ready.  Just didn’t care to think about it, or wanted to do so in his own way.  Tom & I didn’t push it.  We just told him that we were there for him if and when he ever had questions.  It didn’t take long – shortly thereafter, as we were busy preparing t-shirts for our first “Autism Speaks” walk, Henry asked  “Mom, if Dr. Larsson (our Psychologist from the Lovaas Institute) can get the autism out of Elliott’s brain, can I still keep this t-shirt?”  Priorities . . .

This time, however, when he broached the subject, I took a deep breath, and told him that both his siblings had autism.  He thought about it a while, and then in his genuinely upbeat way said he was glad he was really good at some things that are hard for Elliott & Ada so that they could all help each other.  I could not help but smile – in spite of the many mistakes we make in parenting, our trio have genuine compassion and understanding for their various strengths & challenges.  (They’ve also all had time-outs for shooting one another with water guns in the house this week).  But in the end, families are families no matter what – and they “get” that.

Accepting Ada’s diagnosis has been more challenging for me than Elliott’s.  I can’t completely understand why – but likely it is a mix of stuff, and I’m ready to out myself about it, and find ways to deal with it.  Ada’s challenges are not now, and never were, as serious as Elliott’s.  While in many ways, that’s a good thing, I can’t help but think that she will even more acutely comprehend at some point that she is different from her peers, and that for some reason is very painful for me.  Maybe it is partly that she’s a girl, and the social life of girls is just so much more intense than it is for boys.  For instance, Henry can play with a kid for hours at a park, and if I ask him upon leaving “who was your friend” he’ll frequently look perplexed and say “I don’t know – some kid”.  It’s not like that for girls, and knowing the challenges that await her by middle school make me want to up the Prozac now – even before Kindergarten!

At any rate, talking about and processing Ada’s diagnosis is just harder for me.  She often has several days in a row that are great, and I’ll catch myself thinking that school is going to be ok.  Then, it will happen – a super challenging day filled with odd noises, toe-walking, crazy activity levels and facial tensing like crazy.  Those days are rarer now, but no less painful.  Unlike Elliott, she can attend to whole movies, and truly get the plot, and she is often intuitive about what people are thinking or feeling – this is stuff that is painfully difficult for her brother.  But on her off days, I have a hard time not being reduced to tears and just plain mad that autism has to fill so much of our lives – I just get so angry that for reasons I’ll likely never know, that my kids are going to have a tougher road than most.  And yet, we have so much to celebrate – her imaginary skills are exploding, she asks to play with friends all the time, and she’s figured out how to drive her brothers nuts with very little effort.  All that, and a killer sense a style.

Today is Ada’s 5th birthday, and she is really on.  I took her to McDonald’s to get lunch, and as we pulled away from the drive-thru, we realized they didn’t give her fries.  She yelled out “Hey Ronald McDonald, what’s the deal!”  She’s social, chatty, engaged, and stubborn.  These are all qualities that will help her get through the rough spots that are sure to be a part of her future, and more importantly to enjoy all the simple joys that life shares with her.

This journey is not always going to be easy, and we will have our share of challenging days – I need to trust that she will find her own way, even when it’s hard.  I have faith that someday, she will be the strong, independent woman I see glimpses of in her smile.  But as I look at my sweet
5-year-old daughter, excited to be the birthday girl, I am just genuinely happy to be her Mom, and to spend this day enjoying her, and all she continues to teach me.  Maybe I should fill the water guns for her before the brothers get home from school . . .

4 thoughts on “The Talk

  1. Kammy, from one autism fighting/accepting mom to another, your words are remarkable and very touching! I cant believe the similar paths we have taken both in our struggle to find providers to help teach our children and the social world we have stepped out of in our grief. Cheers to new friendships and strong mothers made thru our autism world. Peace, Anne


  2. Please wish Miss Ada a, “Happy Birthday!” from the Urberg’s. This is a lovely testimonial to what you have been/are going through in your Autism adventures. You graciously and humorously enlighten many of us who know little about Austism. Your children are beautiful, healthy, happy, little people – they are blessed with many strengths that will get them far in life (sense of humor is certainly one of them…) I love you, dear friend. Thanks, again, for sharing…


  3. Thanks, Kammy. Now all the guys in the bar are glancing my way as I cry. Last time I read a red couch post while waiting for friend s at happy hour!


  4. I live for your blog postings! You truly inspire me to work harder and stronger, and to continue to be the nag, that I fill the role of so well. Thank you for letting us glimpse into your world. And Happy Birthday to your Angel.



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