A Taste of Normal

Callum having a ball on the porch swing.

“Nobody realizes that some people expend tremendous energy merely to be normal.”
Albert Camus

One of the first things my good friend Christy shared with me about being a special needs mom is that it is isolating.  It’s isolating for so many reasons.  There is the obvious one – that no one seems to know exactly what you are going through.  And then the reasons you can’t anticipate until you experience them.  The not being able to sit down to enjoy yourself so why bother going?  The  emotions you don’t really want to claim but still exist – the pain of watching typical children having fun, the irritation listening to the parent of the typical child bragging about every little thing you would be too if only you were in her shoes, the anger toward others for daring to have the all-too-human reaction of curiosity, pity, or fear of your child.  Oh yeah, it’s isolating, no matter how much your friends and family still love you and want your company.

People who haven’t experienced it don’t get it.  And, to be fair, “don’t get it” is a popular phrase used in our community to describe everyone not us, but it isn’t really fair.  It’s not my fault that I “don’t get” what it is like to be a POW, cancer patient, or natural disaster survivor.  I simply haven’t experienced it.  And neither have they experienced what we have.  It just is.  I suppose twinges of resentment toward those who don’t get it probably just are as well.  Neither good nor bad – just there.  I think what makes it hard, however, is that people don’t understand just how traumatic the experience can be.  At least in the early days when the future is hazy at best, when you are still attempting to bargain with God, when you aren’t at all certain Fate knew what it was doing assigning this seemingly overwhelming job to you.  There are increasing numbers of parents of special needs children being diagnosed with post traumatic stress disorder.  The same disorder that affects victims of violence and disaster.  But it is invisible in a special needs parent.  After all, to the rest of the world, nobody died.  And the people who like and love you quite naturally want you to be the same person you were.  But you aren’t.  You aren’t your normal self.  Because normal no longer applies to any facet of your life.

This weekend, I had an extraordinary experience.  We took our little family of four to visit a high school friend of my husband’s, Matt.  Matt was in town for Easter visiting his parents at their home.  He brought his 4-year-old NT child Gavin with him.  His sister was there with her 14 month old little girl as well.  Matt was not able to bring his wife or their oldest child Deacon- a sweet little 9-year-old boy with severe autism.  Deacon doesn’t travel well right now, so this was just a quick visit to see his family.

We arrived for dinner.  And I didn’t have to launch into a long explanation for why my son wouldn’t eat their food.  We went into the play area of the living room.  And I didn’t have to endure the seemingly endless attempts to engage him with toys.  When I told them he likes to bat at things on a string, they took it in stride.  Matt’s dad and mom were not at all afraid to touch Callum, yet at the same time knew to go about it slowly.  And they delighted in him, talking about how much he reminded them of their grandson.  Soon, Matt’s dad had Callum on the back porch in a swing.  And my child, who normally is happy but fairly mellow while visiting, was shrieking in giggles and enthusiastic vocalizations.  Soon, he had Callum and the other children loaded up for their first tractor ride.  Matt’s sister and mom weren’t fazed by Callum at all.  And Matt’s 4-year-old Gavin didn’t even once look at my son strangely.  In fact, that precious little boy – upon listening to me repeatedly direct Callum to communicate what he wanted with a sign – actually walked over to me and, in all seriousness and concern, informed me, “He can’t talk. He can’t tell you.”  And then, satisfied he had taken up for Callum, ran off to go play with my daughter.

I even got to sit down and chat for a while.

Before we left, Matt’s parents invited us to bring Callum any time we needed a break.  “We know how to do this.  We’ve done this before.  Seriously, anytime”,  Matt’s dad offered.

It was the most…normal visit with friends and family we’ve had since beginning this journey with Callum.    If you have been on a similar journey, then you know exactly what I’m talking about.

First "tractor" ride.

I don’t mean normal in that I’m calling my child abnormal.  He isn’t in the least abnormal.  He is a just a little boy who smiles, gets excited, laughs, giggles, loves, and plays like any child.  He just expresses all of those a little differently.  I mean normal in that I wasn’t the least bit on edge.  I didn’t need to explain or apologize.  I wasn’t the least bit worried my child would be misunderstood.  You know — normal.  And, though Callum is only three years old, I hadn’t had a taste of normal in what seemed like forever.

While hanging out at the lake with Callum, Matt asked Sean if he knew any other autism dads in our area.  Now I know why.  Now I know why our local CARD holds family days.  Now I understand why there are autism play groups.  Because not only do we as parents need moments of normalcy, so do our special needs kids.  Callum is normally a happy little boy, and he loves being wherever we take him. But around perfect strangers?  I’ve never seen my son so all out happy before.  It’s so easy to think that, because he seems oblivious, he is oblivious.  Yet, clearly, he is not.  He instantly responded to those who knew how to interact with him.  He got a little taste of normal too.

And it got me thinking about how the world could be.  If only those who haven’t experienced our reality for a little while could.  If people were educated about autism in their schools, churches, and communities.   If all of our sons and daughters could be brought out to join the world with no fear of being stared at or feared.  If autism awareness/acceptance became normal rather than some idealistic dream.

If only.

 “You may say I’m a dreamer.  But I’m not the only one.”  

-John Lennon

You might also like:
“Dear Friend Whom I Haven’t Seen Much of Lately” 

“Dear Friend Hesitant to Interact with My Special Needs Child”

31 thoughts on “A Taste of Normal

  1. Sarah

    Amen! 100% agreement and you could not have put my feelings into words any better than you did. In fact you may have inspired me – I am thinking of trying to start an autism playgroup in my area.

  2. dixieredmond

    “Before we left, Matt’s parents invited us to bring Callum any time we needed a break. ”We know how to do this. We’ve done this before. Seriously, anytime”, Matt’s dad offered.”

    What a wonderful generous offer. What a gift.

  3. Bridget

    What a delightful picture of Callum on the porch swing! That look of pure joy on his face is priceless. My family has also discovered how relaxing it is to be around other families or groups who “get it” with no explanations needed. I still remember the first time we went on a playdate to the house of another child with autism – his mom offered my son a cookie, but first warned him that it was broken and asked if he would be okay with that – that small act of understanding (that a broken cookie could cause a meltdown) was so incredible to me.

    If you are ever in North Carolina, try to get to Camp Royall – it is a camp run by the Autism Society of North Carolina especially for kids and adults on the spectrum. We attended our first Family Fun Day there this weekend and it was so much fun. It is great to be in a place where no one gives your child’s behavior a second look and the whole family can just enjoy themselves :)

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I will remember that. We have a special needs camp about an hour away from us called Camp I Am Special. We have two family members also on the spectrum who have grown up visiting it each summer. Looking forward to sending our little guy one day as well. Thanks!

  4. Jim Reeve

    Isolation is a huge deal when it comes to raising a speiclal needs child. It can even seem that close family and friends withdraw due to the extreme nature of raising a special needs child. It’s only when you’re around other families with special needs children that we feel acceptance. But what can you do? We just keep trying to educate others one mind at a time.

  5. Brandi Stapleton

    There are times when I really need to hear what you are saying because I just can’t voice my own feelings quite so well. You really get what being an autism mom is all about! Thank you!

  6. Lelia Rose Foreman (@LeliaForeman)

    I remember how good it felt when we were part of research project on auditory training and we were surrounded by autistic people. Yeah, no one batted an eye when my daughter threw her clothes in the toilet to let us know she was mad and had to spend the rest of the session wrapped in a blanket. She was fourteen then.

    1. Brenda

      This note and the story made my day. Not many people comment on older kids and females. Our 17 year old daughter right now only will wear dresses (no undies) and has to take it off to tolerate the car ride to/from school. Thank heavens for dark van windows!!!

  7. Judi

    Thanks for sharing your delightful experience. My heart at this moment feels peaceful like I had been there “normal” with you. It helped me today.

  8. Karla A.

    I know what you mean!!!! I homeschool my ASD son and have had so many issues finding playmates for him. The support group in my area meets weekly so the kids can play…I posted on their forum that my child has ASD to please let their kids know so they could be more patient with him. Well, we went to the playdates for two months…the first couple of times some kids came and play..but once they realized he was…well…different, they stopped playing and started ignoring him. The last day I was there one kid started bullying my son. He would get behind my son and yell very loud in his ear…that made my son laugh (that’s what he does when he gets nervous and sensory overload) and he would tell him to look for something and then yell again. I waiting a few seconds seeing this…to see if this boy’s mom would say something (all the moms were there sitting down and talking to each other…but I never fit in since I cannot talk about how well my kids is doing in Greek or Latin by age 5). Since nobody noticed, I called my son told him we were leaving and took my kids and left…and the sad thing is NOBODY noticed. So now, I meet with a fellow ASD mom who has two kids in the spectrum. We both feel good knowing that the other understands why their kid acts this or that way. We dont have to explain or say sorry. Plus our kids love to play together on their own way. We have found OUR normal :)

  9. Lynne Pardi

    I am so happy for you and your family that you had this wonderful day! Your friend and his parents sound like totally awesome people. They gave you a special gift that day. It made me realize that we “autistic families” have it in our power to offer the same gift to other families like our own. We really do need eachother.

  10. Jenny Lisle

    It never ceases to be amaze me how we can be surrounded by people, yet feel so alone. In some ways, we are very lucky and blessed that Noah is verbal, and high-functioning. Sometimes though because he is so high functioning, we feel even more isolated because people expect him to behave just like every other typically developing child. When we are around other children at church or school visits, the differences are glaring. It’s almost as if because the disability can’t be seen, then there isn’t one. Nothing about Noah really screams “autistic” when adults are interacting with him, so even those adults who are aware of autism, don’t really get it.

    I am happy for you Leigh, that your husband’s friends were so open and accepting. That openness only comes from individuals who have been there on some level and understand how important acceptance truly is.

  11. multiplemom

    I’m in tears…our 10 yr old blind and high-functioning-autistic son had his first play date. His school is 1 and 1/2 hrs away and most of his “friends” live very far. This mom asked if we could get together over spring break. Yes, she lives 45 minutes away, but oh, it was SO WORTH IT. He got to play–sort of. I got to visit with another mom who got it. And I don’t have that. I have wonderful friends, but they all have NT kids.

    The part that made me cry was the offer by Matt’s parents. What a blessing!! Hearing “We understand”, two words that are just amazing.

  12. Tracy

    What a wonderful experience! I recently took my kids to a birthday party of the child of fellow ASD mom (waving to Karla A. above). When one of my boys spilled his drink for the *second* time, and I was apologizing and beginning to feel panic set in, the birthday boy’s father put his hand on my arm, looked me in the eye and said, “It’s ok. No, it’s Really ok.” And he meant it. I cried when I got home. I had never before felt that it was “ok” when out with my boys. I am always on guard, waiting for the next crisis. It can’t be underestimated, the importance of feeling normal.

  13. Leigh Forbes (@spectrum_life)

    I know this feeling! When my son said “that’s not a dinosaur, it’s a dinocephalia – they predate the dinosaurs” and that person kept engaging with him, asking him more about it, rather than throwing me ‘one of those looks’. I love that. It’s a great moment!

  14. C...

    How wonderful to not feel on edge and worried. My son is diagnosed with Aspergers and I know what it’s like to be tense and on edge waiting for the moment your child loses it.

  15. Jenn

    It’s so nice to read from someone who thinks so much like I do ~ I can so relate to those feelings sometimes of envy – wistfulness might be the best word – that go through my mind when I see children younger than my son, doing more than he can (yet), or his peers completing more advanced school work. I do my best to not make comparisons, but sometimes it gets to me. What a blessing you were given that day – and reading your blog goes a long way for me feeling a little less alone in our day to day journey.

  16. Amy Loan

    What a fantastic post!! I hope for that day, too. The day that all people accept all differences in others, including understanding how to interact with anyone with ASD

  17. Carrie

    I have tears streaming down my face and dripping onto my keyboard. My son is now 8 and has a variety of special needs. PDD-NOS, Apraxia of Speech, Dyslexia, ADHD and lots of sensory issues. And genius intelligence. Twice Exceptional. “Hidden” disabilities. Lots of therapy, lots of out of pocket costs, lots of research, lots of trial-and-error, lots of missed “normal” occasions. Isolation is so intense. Most people who know me wouldn’t know how isolated I feel, what with all of my work at the school, leadership roles in various non-profit groups, and close family in town. I keep on keepin’ on. My husband is completely involved too. The sense of loss is always there… that LOOK you were describing so perfectly. I can’t call myself back. The notion of PTSD applying to special needs parents hit hard. Yes! And to just feel “normal”. Yes. You definitely opened a floodgate within me. Thank you. I am sure the waters needed to come out, and now I can deliberately do something about the feelings that were piling up inside of me that I didn’t realize had so desperately taken hold.

Comments are closed.