I used to believe that clarity was epiphanic.  As in, you don’t understand and then –presto whammo! –  you have an experience,  an epiphany, that brings about full insight and you are that much wiser for it.  I know better now.  Parenting a child with special needs is good for that, teaching you all kinds of lessons you never volunteered to learn.

I now know that understanding is multi-layered.  Clarity comes in concentric circles.  Just when you think you have come to a level of peace and acceptance, something occurs and you realize that there is a whole deeper level of understanding with which to contend.  This is how the painful and stressful stuff gets you.  It peels back another layer, and there you are again.  I’m beginning to understand this a bit better now.  Realizing that true understanding, acceptance, and sometimes grief are forever cycling, beginning again with each new layer revealed.   Comprehending that the things I am worried about now with regard to my special needs child will simply evolve into more complex facets of themselves.

A week ago, we took our kids on our first road trip to visit family in North Georgia.  It was a 8 hour car ride and things had been going quite well.  Callum was so easy-going, happy to look out the window, stim, babble, and giggle.  Bronwyn christened us into traveling parenthood with endless bouts of “Are we there yet?” – which, at four, is not unexpected.  I found an awesome classic country station on the radio and got my southern belle on belting out fun singalongs like “Living on Tulsa Time” and “Family Tradition”.  I felt normal.  Positive.  High-spirited even.

Just a couple of hours away from our destination, Sean and I decided to break for lunch.  We chose a McDonalds with a play area – determined to allow the kids some time to run their little legs off a bit.  And it was a really nice play area – sectioned off, indoor, safe, complete with tables and even a toddler zone.  Even the parents were all nice – smiling at others and encouraging their children to be careful with the littler ones.  It should have been ideal.

But soon Callum began attempting to climb up the main slide from the bottom.  He didn’t understand he needed to go up into the maze and slide down.  He was obviously too clumsy to do that anyway.  He climbed up a bit – and just sat in the middle of the “hamster tube”, partially blocking the children so anxious to get around him.  My husband and I were too big to crawl up to get him out, so we had to verbally encourage him to come down.  We directed him to the toddler zone, where his clumsiness became obvious.  He did figure out that he needed to climb the plastic ramp rather than the slide, but it took many tries.

Then a couple of sweet kids came up and attempted to engage with him.  He smiled in their general direction and backed into a corner, flapping away and making odd vocalizations and facial expressions.  And I saw, for the very first time, the strange expressions on the faces of those children – who were realizing there was something different about him.  They didn’t even back away.  Bless their little hearts, they again attempted to engage him before walking away, looking back curiously.  There was no malice, just an awareness of his otherness.

And then Callum took an interest in all of the tables nearby.  He started walking up to them, reaching for their food and drinks.  All of the parents waved away my apologies and smiled at Callum, flapping away.  Not one single soul rudely stared or showed any kind of disapproval.

But I noticed.  Oh, how I noticed.  I saw the future – Callum, so happy to be in the middle of such fun, yet not knowing how to join in.  These children, a bit older and less tolerant of his differentness.  The smiling parents, no longer able to dismiss his odd behaviors as being due to his age, relieved they aren’t in our shoes.  I saw the future in the past I have already (due to family and professional experience) seen before.  And it hurt.  One more layer of understanding revealed.  And the realization that there are so many more underneath, also waiting to be discovered.

All the while, my daughter was pressing her little face against the “hamster tube” sides calling out, “Mama, look at me!”  At one point in our concern to get Callum out of the maze, I lost sight of her and panicked.  Only to find her in a tube, making silly faces to get my attention.  A moment frozen in time —and yet another layer of understanding revealed.

I had to get out of there.  And, in doing so, I didn’t do such a great job of warning my daughter of our impending departure.  It was sudden, and she was having fun.  So, she threw the mother of all tantrums.  And, in her howls of protest, I heard all of the future injustices that will be perpetrated upon her.  When she needs our attention, but it must – by some necessity – be directed to her brother.  When she wants for all the world to have a special moment – to have it ruined by her brother.  When she actually realizes her brother isn’t really a baby and cares what her friends think.  I know she’ll survive it and be a better person for it.  But she, too, has hard times and lessons ahead.

Something in me broke amidst the chaos of that play area and my daughter’s screaming.  And I committed another injustice upon her.  In the middle of angrily trying to drag her out of there, I thought she had picked up another child’s toy and demanded she leave it behind – not realizing or listening to her crying that it really was hers, a toy from her Happy Meal.  I made her leave her My Little Pony on the table, desperately trying to escape that room.  I won’t be getting Mother of the Year for that. If it hadn’t been for my husband realizing I was unhinged and sorting it out, her toy would have been left behind forever – creating a memory I’d rather she not have.  (I don’t begin to know how single parents do this and survive mentally intact.  I guess, like all parents, you just do what you have to.)

In the car, I attempted to recapture the mood, but I could no longer find that station on the radio.

So I look around me at all the things I worry about now – communication, socialization, cognition at the preschool level– and am reminded that, with each challenge met and each new phase of development, that there will more and more layers of worry revealed.   Yes, he may develop speech, but will he know how to converse?  Yes, he may converse, but will he have friends to talk to?  Each concern will become more complex as he grows.  And I’m clearly going to have to do a better job of getting a grip.

For, unlike it is portrayed in books and film, clarity isn’t always patient enough to wait around for its owner to take out her journal, drink wine with a group of witty and insightful friends, or have an epiphany in the safety of her therapist’s office.  Sometimes clarity comes screaming up to you and knocks you over at the playground, the grocery store, or waiting for the light to change.  And there is nothing to do but reach in and remove the outermost layer, take a good look at it, keep calm, and carry on.  Somehow I’m going to have to steel myself to not flee from the playground.  Because, truly, the only person actually upset was me.  Worried about pain that has not yet come to pass – and in doing so – forgetting to relax, breathe, and simply live.  To not sweat the little things.  To climb up the slide backwards.  To crank up the radio. 

So this morning, on classic country, I hear Conway Twitty’s ragged baritone take on new meaning:

It’s the…soul afraid of dying – that never learns to live.  – “The Rose”

If you liked this post, you might also like:  “Letter to My Neurotypical Child”

34 responses »

  1. .mari. says:

    What a great post! I’m a 21 year old, the oldest of 7 kids, and my third sibling – now 18 – was diagnosed with autism when he was 4. Since we are relatively close in age, it took me a while to realize that other kids would react differently to his “otherness”. My mom would kindly explain to us that he was different and special, and that we should be patient and loving to him. I’m sure she always had these concerns you mentioned, and as I grew up they became more clear to me. My brother can speak and communicate, but has little conversation skills and slower social interaction. He can read and write, but can’t absorb abstract contents such as math or history. At 18, he’s starting his first year of high school. Even when he graduates, he won’t be able to go to college. I could spend nights thinking about what will happen to him when my parents get older and older. Luckily he has siblings who love him, but it is still something that concerns me.

    Thanks for writing this blog 🙂

  2. […] was the first post I read on Leigh’s blog, and I suggest you check it out: Why I wont be getting the Mother of the Year Award – Layers of understanding. It is so sensitive and honest – and you will easily see why I was immediately drawn in. It […]

  3. Oh I feel this pain for sure. I think we are so much harder on ourselves as parents than does us or our children any good. Even when people are being understanding and kind, I still feel the anticipatory grief of the day when my son will be bigger (and less adorable? never!) but people WONT be as kind and I think that is the pain: we get ahead of ourselves. Don’t beat yourself up. Just know that lots of mothers are in similar situations and we don’t always make the right choices all the time. Love your blog–Jenn

  4. Karla A. says:

    Gosh! I wish I didnt have any experience in this particular department… 😦 but I do…my son is now 7 and I have already seen him being bullied…it was horrible!

  5. Robin says:

    My favorite blog yet……really hits home for most of us expect. Thank you!

  6. Dear Sweet Flappiness Mom,

    There is a verse in Proverbs that says, “Only a fool runs when nothing is chasing him.”

    And there are two other verses that I stand on (the first of which suredly saved my sanity when my Trisomy 21 son was almost a year old).

    Proverbs 31:25 “She walks in strength and dignity and laughs with no fear of the future.”

    Numbers 14:28 “And the Lord said, ‘I will give to them exactly what I heard them say.’ ”
    I have one more verse on a sign in my driveway – as a constant reminder –

    Jeremiah 29:11 “For I know the plans I have for you. Plans to prosper you and not to harm you,” declares the Lord, “Plans for a hope and for a future.”

    I find it very helpful to actually write these verses on paper and put them an put them in the bottom of the shoes I am wearing – so that I can KNOW that I am truly STANDING ON THESE PROMISES.

    (One last thought – It helps me to analyze things by asking myself this one question ‘In the face of eternity is this really going to matter?’)

    Still In One Peace,

  7. Megan says:

    Our NT daughter just turned four and our son w/ autism is two and when reading your posts I feel like I am reading our family’s experiences as well:-) I feel bad at times for my daughter when activities and outings are cut short b/c our son is having a moment etc, but on the other hand she is quite the diva herself can be more of a handful than her brother! I do set aside mother and daughter time with her so we can do things together like going to the library and lunch afterwards and I love it just as much as her. This also gives my husband and our son father and son bonding time which I know they love especially having the house to themselves with the girls gone….making messes in the man cave with our beagle running around in the mix.

    We recently made our first “long” family car trip (6.5 hours each way) and I was amazed at how well both kids did in the car especially with our portable dvd player not working!

  8. Great post. Totally get it. Felt like with my son I had totally accepted it may take him a while to make friends, ok, I was ok with that reality and then this year he starts getting bullied, by several kids, including some in his social skills class and all the pain and fear washes over me all over again. It will be a constant cycle I guess. Hang in there!

  9. Anni says:

    You are too hard on yourself. We go through the same exact thing with our autistic and typical kids. After a while you find a rhythm that works and you stick to it. Let it come naturally instead of forcing it…tag team with your husband.

  10. Lynne Pardi says:

    I so enjoy your writing!! You have such a pleasing writing style, and such wisdom! As the parent of an autistic son, I know that your wisdom is hard-earned via painful learning experiences. I feel your pain, and I rejoice in your indomitable spirit of resilient joy. I always had the pain, but didn’t usually have the joy. I recall my kids’ childhoods (they’re grown now, 27 & 25) with sadness. I wasn’t a happy Mom. I was tired, tense, and overwhelmed. Children sense this and it hurts them in ways I am still seeing in them– especially in my “typical” son.

    I’m so happy for you that your husband is so involved and truly a partner in the parenting in your family. My husband and I bitterly disagreed about how to raise our autistic child. He eventually just withdrew emotionally. He pretty much “took charge” of raising our typical son, and left all the care & responsibility of “Jay” to me. Our non-autistic son came to resent me– now he resents us both (big surprise!). We were, and still are, a dysfunctional mess.

    Life has settled down and eased up a lot since, at age 16, Jay went to live in a group home. (That almost killed me, but I somehow survived). We are trying to heal and be as “normal” as we can be. You spoke of “layers” of clarity and understanding– yes, so true! I find that I shed one “layer” of guilt, sorrow, and pain, feeling relieved for a time, and WHAM! I discover another one lurking underneath it. You are so wise to see that we need to quit worrying about what might possibly happen (or, in my case, what happened in the past)– things we have no real control over! You said it so well, that we need to live in the “here & now” with our families; otherwise, we’ll all miss out on all the little joys and wonderful moments we should be sharing with them! The past no longer exists, and the future doesn’t exist yet– the present is really all we have, and the only “arena” in which we can make a difference! Thank you for sharing that wisdom, and your strength, with me and with all of us. God bless you.

    • FlappinessIs says:

      Oh my gosh. Thank you for such kind words. I try to find wisdom. But, on some days, having it and using it don’t necessarily connect. I am lucky that my husband has come to such early acceptance. He has a big heart and is especially close to Callum. But I know it can be hard for daddies. I’m sure most of do the best we can. And, one day, our kids will grow to have kids of their own and probably forgive us. I think that is just the nature of man. Best wishes to you, Lynne. Thanks for taking the time to share your thoughts. 🙂

      • Lynne Pardi says:

        Thanks so much for replying to me! I know this sounds kind of “cheesy,” but after reading your reply, I thought of the Crosby, Stills, & Nash song “Teach Your Children.” Those lyrics finally make sense to me.

  11. tiyanasmom says:

    Ouch does this post hit home. I have come home from the playground and dissolved into tears as I tell my husband about our experiences. Still, it’s the place my daughter always wants to go. Some days are better than others, but the things you hit on are always weighing on me.

  12. Kim Osburn says:

    My 2yo son does the same thing at playgrounds – climbs up the wrong end of the tube slide and sits in the tube, grinning and flapping away while other kids slide into him and give him odd looks. It’s disheartening. But I keep taking him to playgrounds when I have the mental energy to handle it, because I figure it’s the only chance he has of learning to play.

  13. Michelle says:

    So well said… Man, this is HARD! He is only 5; it’s not going to get easier. One smile, one tantrum, one day at a time…

  14. Sandy says:

    I actually teared up reading this, and my kids are all but grown. I’m not “there” anymore. McDonald’s play-place was always stressful for us, but living in Michigan, I wasn’t willing to give it up. I remember so well how many injustices my NT daughter had to endure and how guilty I felt for soooooo long. The only encouragement I can offer is to try to make it up to her in other ways. Since you have a partner in this, take turns taking your NT child on “dates” without her sibling. Go to the movies, out to dinner, girls weekend away. In turn, your son gets alone time with the other parent and doesn’t have to endure the stress of an unfamiliar place. It’s a win-win for everyone involved. I’m not saying to leave your son behind all of the time. Balance it out. Pick and choose which one goes and which one stays, but find 1 on 1 time with both of them. It will all work out. Oh, and take care of yourself and your marriage too. Find time to be a couple. Marriages are very vulnerable when you are raising a high demand child. See if you can get Respite Care so you can go on dates with your spouse.

    • FlappinessIs says:

      We do need to take this advice. For both my daughter and my son – who often has more to deal with in his high-maintainance big sister than she does in him. lol Thanks!

  15. Yvonne says:

    I am an early intervention SLP, and your words have been voiced to me by parents several times. Maybe not in such beautifully detailed words, but you get the “future” they are looking at behind their question. I want to direct parents to your blog, because while I can be empathetic, and I can tell them what I have observed with my other clients, I have not lived their life or their future.

    Sometimes clarity comes in not “figuring” it all out, but in seeing that we are not alone. Thank you for sharing with so many.

    • FlappinessIs says:

      Thank you so much! I especially love hearing from parents who are in the same place I am – starting out. Figuring out I wasn’t alone was life changing, I can tell you that. 🙂

  16. Jim Reeve says:

    It’s tough and raising a child with autism always has a learning curve. The only people in my family with learning issues are me and my son. It’s hard when you don’t know what to do, and second guessing yourself is so easy. I think you’re doing a great job as a parent and that’s something we forget to focus on sometimes.

  17. I hate those moments. I really do. Good thing there are happy moments too. Be gentle on yourself.

  18. Amy says:

    Wonderful post. I can speak to your daughter’s experiences a bit. My only sibling is not autistic but has special needs…mental impairment and Tourette’s Syndrome. I did my master’s thesis on Buddy Systems in preparation for my life as a speech language pathologist. I now have children who know that their uncle is different.. and dearly loved. I also married a fantastic man who also has a sibling with challenges. I now do early intervention for children on the autism spectrum. Will your daughter have challenges? Oh yes. I can’t help think how many families I never would have gotten to know, to help, or to just love on… if it weren’t for my brother. Don’t give up on mother of the year just yet… I think you are in the running.

    • FlappinessIs says:

      Thanks for sharing your perspective. I know she will better for it. I do. I just hate the difficulties that will precede it. And I hate the thought of him ever feeling bad for it. Thanks again.

  19. C... says:

    My Aspie son is 11 and let me tell you I still have moments where his differences weigh more heavily on me than they do on him. He’s more well adjusted than I am sometimes. It does get easier but you realize as they get older the obstacles or challenges they face come with greater degree of risk, pain and exclusion. It could mean the difference between holding a job down, driving or getting married.

  20. ylewis says:

    You are right, the journey is cyclical and you hit the same emotional markers again and again, for ever-changing reasons. As always, beautifully articulated. I almost always get so sad at the park or on a playdate where my son’s “otherness” is also starkly apparent. That’s my issue, not his. I’ve learned to tough it out as long as he’s having fun and focus on the victories happening in front of me as he tries so much harder than anyone else to do the same things and shows once again the joyfully resilient character being built inside him daily. You are right about the sacrifices of an older sibling, too. That hurts so much, but you’re right that it will only make them better people. Grace and peace to you. You are a wonderful mom!

  21. This essay is so thought-provoking and so full of unexpected moments of awareness of the perception of children and adults and new interactions.

    And it is a really well-written account of a small moment on a long drive with your family.

    Thank you so much for sharing this slice of your life— and of your own moment as a mother, poised at the newest crossroads.

  22. kathywenning says:

    I cannot deny the truth of your thoughts here. But, please don’t be disheartened (for long anyway). God is fair, there will be just as many epiphanies that will show you all the things that are right with your son and the people in his life as there are hurtful ones – maybe more – definitely more important ones. There will be people who will come to love and accept Callum for who he is and the gifts he has. If you give others a chance, you will find that there are many, many good people out there who will welcome him and want to get to know him. And, who cares about the rest?! Sometimes, especially in new situations, it is hard – hardest on the Mom. So, don’t chastise yourself, we all need to run away sometimes – it’s called survival. Steel yourself for the next time, to be sure, but allow for the times you need to pull back and recover. Sometimes, as you mentioned, everyone else is just fine. So if you can bring yourself to just take one step back, the situation just may turn out to be a good one. I have found that often, I get in my son’s way by trying to help or protect him. When I get out of the way, he manages just fine. I admit this is hard to do! On the flip side: definitely savor each and every positive epiphany that comes your way! I know you know all of this – but I just had to say it anyway – from further on down the road: My son, Joe is 24 (he has an intellectual disability). His biggest passion is people, so we have had lots of practice in ‘social interactions’. Take Care – I love your Blog by the way – for a young mom, you are so ‘on the mark’ about having a child with a disability and how to live a full happy life as a ‘differently normal’ family.

  23. Heather Murray says:

    Thank you for the post. It made me teary as I was reading it. I am there. There is always a worry and that is why I try to live in the day or even the moment. This type of thinking really throws off my A type personality husband but it helps me!

  24. Lisa says:

    I so get everything you are saying here. I feel many of the same things. Tate is *just* getting to the age and size where he’s not a cute little oblivious preschooler. His differences are more obvious…and the questions are asked more…and the looks…and my other two boys don’t always get the attention they deserve, either. You aren’t alone…and remember, we are human…and we are learning as we go…and there are so many layers out there…so, I guess, a hug from another mom who is in your shoes…

  25. fernanda says:

    Another mom told me: You have to learn to forgive yourself.
    so, it’s something else to learn as I travel through this journey.
    I am single parenting my son, and it’s a daily battle with me. Not with his autism spectrum. I find very difficult to see clearly when in desperate situations. But, there’s always a little gap in time that allows some room to see things clearer. I learnt to get a hold of those gaps and make the best of it. But, I also have many “blackouts” when I can’t see anything, cannot even stand up.. and what I hear from other more experienced moms, it is all very normal. In this journey..all of it, is supposed to happen.

  26. Marlene says:

    Very touching! As a parent of a now 38yr. old with autism, I have seen layer after layer unfold in the learning process of my own parenting. I’ve also learned how to forgive myself for the unintended mistakes. We are only humans needing every bit of reinforcement we can get as we make our way through each day, as well as each and every year. These lessons of life can be shared between parent and child in that a mistake made by a parent can be a lesson learned by all: By hunbly telling your child that Mommy made a mistake, you have taught her how to understand you more, how to love you even more, and how to forgive human frailty…these are the lessons learned through your human mistakes and honesty. For this, you will deserve to rank as one of the Mothers of the Year. And, how fortunate you are to have the ‘gift’ for articulating your thoughts as deeply and beautifully as you do. Just think what these words will mean to your children in years to come.

  27. Laura says:

    OMG I could have written that. My son is almost 4 and it has gotten better, but he will never be his typical 5yr sister. My heart breaks for you as I read that as I know the pain you feel.

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s