And So It Begins…

The Right Moment

I knew it was coming.  So, it isn’t a surprise.  Funny how that doesn’t make it any easier.  Having seen relatives raise autistic children, I knew the time was coming when taking our son out in public would become officially difficult.  Up until now, I have been able to avoid the stares of others during my son’s tantrums.  He was still a baby.  Until recently, most people (including those who knew him fairly well) didn’t think he was so different than other toddlers.  Many of them were still making the He’ll Catch Up, So Quit Worrying argument.  But, as he is getting closer to three, it is becoming more obvious that he doesn’t talk, doesn’t play normally, and emits ear-piercing shrieks when life isn’t going his way.

I got my first Stares From People in Public Who Clearly Raised Their (Normal) Children Better Than Me the other day.  We went for our weekly trip to Publix and, for the first time, the cookie that the nice folks in the bakery gave Callum didn’t keep him happy.  He began to shriek.  And shriek.  And, just when we thought it was over, shriek some more.  And they all looked up and stared.  That stare that speaks volumes and says, “I’d tear his little butt up and shame on you as a mother for not having done it already.”  I looked around, and then I knew.  The days of blending in are over.  We are about to become the family that is a pain to have around.

A couple of days later, my best friend Beverly arrived from Vermont.  We hadn’t seen each other’s kids in over two years.  We took them to a park.  And Callum wasn’t happy.  We took them to Wendy’s to lunch.  And Callum threw everything within reach off the table.  And shrieked for a chicken nuggett – pretty much the only thing left that he will eat.  Yep, those days are here.

I’m not ashamed.  But I’m sad.  I’m sad that he doesn’t know the joys of playing with others.  I’m sad that my four year was so desperately happy to have a playmate who actually played with her.  I’m sad that I couldn’t sit down for a few minutes and enjoy my friend without following Callum around, who is always busy AWAY from where all the other children are grouped.

But then he found the hammock.  I put him in it, and he just melted with satisfaction.  And I got some cool pictures – the rare kind that you can’t ever seem to get with a child with autism.  Ones with genuine smiles that highlight the little souls we love so, so much.  So, for Thanksgiving, I am thankful for hammocks.  Hammocks under canopy trees in perfect, breezy weather.  And cameras available in The Right Moment.

And for Callum.  I cannot imagine life without this precious little angel of a boy.

19 thoughts on “And So It Begins…

  1. Jenny Lisle

    Noah has always loved the sensation that swinging gives him. When on the playground, he would swing for hours. At school, he would head straight for the swings during recess time and that’s where he would stay until it was time to go back inside. At OT, the privilege of swinging was his well-earned reward for working so hard to do all of the things the OT asked of him. Even at 11, he will still head straight to the swings for the peace that swinging gives him. There are times, when I will just sit in the swing next to him, and I get that “peace” he must be experiencing. At those moments, the world around me slows, and becomes more vibrant and relaxing.

    I love the pictures of Callum in the hammock! The innocence and pure look of joy, contentment, and happiness that sometimes are rare moments for these precious little boys.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thank you! Callum is the same way with swings. (I’m just hoping he doesn’t inherit my chronic motion sickness one day.)

      I crept over toward that camera holding my breath – as I know you know. lol

  2. Terri Keegstra

    I know well the looks you mention in this post. My oldest son was diagnosed with mild-moderate autism just after he turned 3. We noticed around 2-2.5 yrs that something was not right, but it took about 6 months to finally get a diagnosis.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Yeah, that getting a diagnosis part can be stressful. We took Callum to a developmental pediatrician when he turned two. But, because, he has pretty good eye contact and shows “communicative intent”, the doctor didn’t want to slap a label on him until closer to three. He turns three in March, so it is coming soon. We know. We just want it official. And, of course, I selfishly confess to hoping someone will reassure me that it is mild/moderate too. Thanks for stopping by, Terri. :)

      1. alicia

        I’m not sure why doctors are still so hesitant about giving labels. It only delays treatment that is crucial to receive asap. The only thing accomplished by waiting is waisting precious time when their brains are still developing neuron connections and so can be influenced in a real and effective way. The whole process of getting a diagnosis is so daunting with wait lists and ambiguous doctors. :( hopefully this will improve drastically in the next few years as early intervention therapy becomes more common due to the increasing number of states passing legislation forcing private insurance to cover it. I just wanted to thank you for wriing so openly and honestly about your experiences. I shared your most recent blog on Facebook and had several people comment on how insightful it was.

  3. SHANNON

    I know all to well about “the LOOKS”. My son is six and we have had some very interesting trips to the grocery and department stores. He also screams alot when he is unhappy. Until about 6 months ago he was non verbal. How flustrating it has to be to not being able to tell someone you are scared, happy, sad, or tired. We not onlly have gotten the stared but we get very rude comments as well. One day while at a flea market 2 men told me my son was giving them a headache. Another day while watching a movie a man who was sitting in behind us said my child was the meanest child he had ever seen. We live in a very small town and there is little understand for any social issues. One day I was at my breaking point in Wal Mart my child was not having a good day, he was screaming, wanting to run away, I was in tears trying to shop, a wonderful woman walked up to me and give me a hug, out of no where. She told me it will get better and that she understood, her 11 yr old with autism was standing beside her. I to this very day think of how much it ment to me for someone to go out of their way to let me know I was not alone. One day I hope to get the chance to do the same for someone else. Things have gotten better since that afternoon. We have made strides in his behavior with speech, diet, and being in a FMD classroom. His teachers and aides have helped him and gotten things from him I couldn’t have imagined. He is now reading, counting to 1000, know colors, shapes, and with a lot of pushing is singing in the upcome Christmas program (even though the music teacher didn’t want is class to sing). We still have bad days, but it is worth it, when you finally recive that first “Mom, I love you too.”

  4. Jill F.

    I was what one considered an overeducated housewife when I started seeing autism signs in my son. I had a psychology and a counseling degree and a career started before I had my son, and it turned my world around. I can’t imagine life without him, but life as I knew it is simply gone. The looks, the comments, the stares- all of them hurt and all of them make your heart ache. I have also had the kindness of strangers help me, and I try to educate people about autism whenever I can.

  5. Karen

    In my experience, people are not necessarily thinking negative things when they stare. I’ve observed strangers watching us, then they come up to me and make very supportive comments about my family and my parenting style. Most of the time people just don’t know what to say (or think) and don’t realize they are staring. So I got some bright pink fabric paint and wrote on my black purse in large letters: ASK ME ABOUT AUTISM. I also have that written on 2 t-shirts. This is what happened next: http://blog.friendshipcircle.org/2011/03/25/ask-me-about-autism/

    I wish your family all the best. xox

  6. Holly

    My son Maguire was just diagnosed in September right before he turned 3. It definitely wasn’t a surprise but hard none the less. At times it is very hard to take him out in public and I use to get really frustrated at the people staring or judging. Now I dare them to question my parenting or comment about my son. I will gladly inform them about what an awesome little guy he is. He has a shirt that says “I have Autism, what is your super power.” Your little guy is sure cute and I love his name!

  7. caren

    Our daughter katy is 8. She was diagnosed at age 3. I understand what u are going through. Our daughter Maire is 6 and she is so happy on the rare days that Katy wants to play with her….may God give u grace as u raise this little boy.

  8. Karen

    I have had my share of melt down moments, especially while shopping with my son, now 9. Or in church when sitting still is impossible and every noise his little sister makes sets him off. Trying to blend in is not in our futures. During a tantrum I speak to him just the way I do at home. Loudly, directly, using simple words. If the meltdown continues I wait until he can calm down. I don’t leave anymore. And I tell him, I understand you are hot, cold, hungry, bored, uncomfortable, overstimulated,..but we are here and we are not leaving… Give me five minutes to finish x and I will get you out of here. Of course it is easier to reason with him now that he is older. It requires a lot of patience to let ppl stare at me and to remember to use the tools I have learned in OT to calm him, skills as individual as the child is and only learned through trial and error. Infinite patience. Like recognizing that he needs to go to the bathroom at the least opportune times not because he has to go but needs the quiet for a few minutes and to be soothed by the running water. I have been lucky to have the lady in the checkout line ask me if it is OK if she holds my daughters hand while I scoop up my puddle of a son and try to get him to the car. The snack bar girl bring a small bag of popcorn to distract him. Or the soccer coach who talked him off the field when he got frustrated and had a tantrum. Or the mom in church telling me she had a “strong willed” child who just graduated from college, and this too shall pass and that I am doing all the right things for him. It is harder on us.

  9. Jenn

    I have worked with children with autism in several capacities – as a care worker in a residential treatment center, one on one as a respite worker, training to be a counselor on our areas autism line, and I teach martial arts and have two boys with asperger’s. My point? I know what autism looks like. I am not afraid of it nor of the children nor of their parents.

    But the more I “work” with it… the more I realize, I can’t possibly comprehend what it would be like if it was MY son melting down in aisle three, or if it was MY daughter stimming and clicking her way through church. I just… can’t. I have not been there; I do not know.

    But I have been where I have been… and it makes me care. It takes away my fear… if I see you and your son in the store, I may stare briefly before I approach and say “You’ll make it. You’re doing what he needs. Thank you for every minute you spend with him, because it DOES matter.” And I may offer to go fetch the rest of what’s on your list, help you through the checkout, or guard your cart while you go to the bathroom for that quiet moment. And if your son or daughter spits on me or kicks my shins or gets other bodily fluids on me… I’ll do the same thing you would: go home and wash them. I am not the person who minds your (collective) presence… I cherish children. All of them. Because while I can’t imagine… I can care and I can try to be the bright spot in your day.

    1. Jenn

      I should clarify in my post, I said “and have two boys with asperger’s.” I MEANT i have two boys with asperger’s IN MY CLASS (I don’t have any children of my own).

    2. alicia

      I love what you said. Thank you for being that person. I will remember your words “I can’t imagine…. but I can care”.

  10. yoongz

    i saw your blog featured & hopped on over. i like the way you write – honest & to the point. i guess that’s the way you have to be when you have to be speaking for your special needs child as well as yourself. My son has been evaluated twice (he is 7 now) but is not placed on the spectrum though they (the experts) admit he is different – so we have settled for ADHD at the moment… which maybe a misdiagnosis anyway since he seems to be coping well in regular school now (after all that evaluation) but still has his moments… i haven’t blogged about this much or spoken about it much outside family and close friends, being new to all this… but i just wanted you to know that i stand with you in spirit… as we each care & love our special children…
    PS: i agree with the comment which said that people may not be thinking negative things… they are more likely shocked and don’t know how else better to react.

    1. aspiegurl

      I was diagnosed with Asperger’s at 4 and read autism blogs. Stimeyland is my main one now and Stimey has three kids and one has SPD, she says which I’ve read can be misdiagnosed as ADHD. SPD folks calm down with sensation unlike those with ADHD. Have you considered whether or not he may have SPD?

  11. therocchronicles

    I just read backwards through your blog and had to tell you your writing is fantastic, I’m so glad you are sharing your story. I identify with every.single.post. I am a few years down the path, my boy is 7, but I’m walking it with you.

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