Judge Mental

By Cathy Jameson

With spring starting, I find more chances to send my kids to the backyard to play. We are able to jet out as a family and catch the last hour before sunset at a local park some days. It’s not so crowded, is fenced in, has a big kid section and a not-so-big kid section. My husband and I take positions on opposite sides of the park and hope everyone stays happy. He’s got eyes on Ronan and I follow the newly-toddling baby.  Other times, when it’s just me and my four typical kids, we look for stuff to do when Ronan is at school or at therapy.  We found a large but manageable park that is perfect for us. Park hopping offers ample people watching time for me to size up the next generation of little people.  It also makes me self-conscious of what’s missing.

I’m in awe of the little people we see at the park.  They talk, they walk, they interact, they play, they listen and they do.  I have my own typical kids who do mostly normal things; but, other people’s regular kids who are not growing up in a house filled with the stresses of raising a special needs child amaze me. Just as gobsmacking are the parents of these walking and talking wonders. Moms are dressed up in jogging suits—their jacket AND pants match! They wear designer shoes and walk with strollers that don’t squeak.  Hair and nails are meticulously done.  A professional photographer should jump out of the bushes to capture these moments of park perfection.  Instead, I engrain that imagine in my brain. 

Among the smattering of intimate play dates with cheerful children and parental bliss, there’s me. Disheveled. Tired. Anxious. Rigid. I am a hawk, surveying the perimeter as my kids scatter in four different directions.  I know I shouldn’t worry since my oldest is more responsible than many of the kids we see. She looks out for the littles which relieves some of the scanning I do across the jungle gym. I am a mouse, timidly thinking I haven’t got a clue as how to hang out with these normal Moms. I feel like I have nothing in common with them except that we both bore children into the world. I am a fox, ready to tell you everything there is to know about vaccine injury or autism but not really since I’m scared to start a conversation. If anyone approaches me, I’m polite but I end up keeping the chit chat short and move along at a break in the conversation. I am a lion though, don’t you dare let your 4-year old basket case of a son jump in front of my kid at the line for the slide!  I am quicker with the defenses than I am with an introductory chance at meeting new people. 

Why am full of mixed-up emotions the minute we pull into the parking lot?  Millions of thoughts pour out of my brain: Do we have everything? Who has to pee? Do I bring the snacks or leave them for later? Do we have enough time to play or will I ever be able to relax for once?   Most times, I am unable to enjoy the park date.  I thought it would be easier for me to transition into warmer weather outings after attempting several visits to the indoor bounce house. Instead, pandemonium and stinky feet surrounded me. 

At one visit to the indoor bounce house, I had my HFA radar on full alert.  High functional autism has become easy for me to detect.  My neighbor Marge had gone with us on our visit and was not surprised I could identify a boy so quickly. The young boy’s caretaker had a dickens of a time keeping up with him. He bounded literally from one end of the facility to the other, refusing to touch anything and refusing to be touched. He couldn’t be entertained or contained.  I said a prayer for the girl while she made her twentieth trip around the equipment. For the hour and a half we were there, I don’t think the boy once did any actual bouncing.

In between watching the young boy and keeping tabs on my own little people, a birthday party started.  Other families wanting to enjoy a few hours of indoor play also piled into the facility making for a very busy morning.  I scanned the room as a family walked in. Three typical boys wearing matching sweaters, shorts, socks and sneakers floated into the main area. I couldn’t take my eyes off of them. The oldest was only about 4 years old. The younger two were twins.  They were normal, picture perfect and beautiful.  Mom and Dad could have been cut out of a Banana Republic billboard. P-e-r-f-e-c-t.  Dad had not one hair out of place, button-down shirt, khakis and loafers. Mom seemingly stepped out of the salon with beautiful hair, painted nails, short shorts showing off her tanned legs with high, but not too high, heels on.  Add the three typical boys to the picture and you’ve got the snapshot of the year.

I found myself staring a little too long at this family. I watched Dad slide down one of the big slides with his oldest boy. I forced a smile when Mom waved to her son as she took another picture of his sweet, toothy grin. My heart ached. Oh, if only Ronan could play so easily and get rid of the sensory issues I don’t understand.  If only he could enjoy the sheer happiness of being able to run and jump and shout with glee like other kids.  I had to turn away so as not to look like a stalker when the family walked passed me.  Focus, Cat. You’ve got your crew to eyeball at a place like this. Marge and I tag-teamed the four we brought with us—I counted heads while she followed the baby.

My children buzzed back and forth, sweating, laughing, shouting, “Hey, Mom! Watch this!”  I shook my mental pain away so I could return to my senses. My typical kids were having the best time and here I was judging what I had envisioned as a perfect family. I wasn’t entirely jealous, but I wasn’t entirely honest with myself. I glanced at my kids, some of the rowdiest of the bunch, smiled and waved and looked toward the beautiful Mom again. I wondered if I would be brave enough to start a conversation with her, complimenting her on her children while somehow hoping to ask if she knew anything about autism and vaccines and especially boys and autism and vaccines. Knowing that boys’ statistics are higher, she’s behind the proverbial eight ball with their chances of having adverse affects…did she know that?

Gathering my children from their bouncy playtime took awhile. They had lots of high energy that brought happy smiles when I started to sink to the low ‘if I’d only known’ thoughts that invaded my brain. It’s not on a daily basis I deal with those thoughts. They creep up at the wrong moment. That day, seeing so many normal kids and typical parents in one place was hard. It’s not like I don’t get out in public, believe me, I do; but that situation of “normal” is not part of my life.  

After stealing the last few glances of Mr. and Mrs. Perfect & Children, I had to remind myself that Ronan is thriving. He is progressing. He is happy. Most of all, he is still able. Marge helped me gather the kids, their jackets, shoes and a tasty snack for being so well behaved.  That brought be back to my senses—to have a dear friend give up an entire day to help me shlep my kids to one of the loudest places imaginable while Ronan was doing his best at school and therapy--that offered me a chance to let my normal kids be wild and carefree.  Marge praised me for making trips like this happen for my kids and for being a great mother to all of my children.

A few days later, we went to the park. This time, I met up with another friend. Laura has a child with medical problems; some are similar to Ronan’s and others are scary to me.  I was more relaxed with her compared to the parents I had seen milling about at the bounce house. She and I understand each other…the wants, the needs, the highs, the lows, the hopes, the fears and the whatever-in-between. I can laugh with her. We can go weeks without seeing each other and the friendship stays strong. I have cried on the phone to Laura because I knew I could and I knew she wouldn’t judge. It’s comforting to know that I can call and complain about a doctor’s lack of care for a few seconds because in minutes, I know that my ears will be filled with good advice.  I don’t walk off a mental ledge full of angst like I thought I would.  Laura’s got an amazing strength. She also has some really neat kids. My own children adore them and I have been told that hers think mine are pretty cool too.

When we were at the park with Laura, I ignored everyone else. Our children played so well together with their chasing games, climbing on everything bolted to the ground, exploring and even taking care of each other. I don’t think she and I finished one full conversation but that didn’t matter. I enjoyed the chance to just be me and be comfortable with a true friend.  Laura is a wonder—full of knowledge, insight and drive that keeps me open to learning more.  Our children have their own individual needs, but in the scheme of things, we’re both working on making life manageable, better and hopeful.

I will brave the world out there and I will likely retreat mentally in my feeble attempts to make real-life happen for my family. With Ronan’s ever-growing list of things and therapy that make him a happier and more-abled little boy, I know we have to get out of our comfort zone and live life.  Every day is a challenge if not with Ronan, than with a sibling that begins to understand that some of his ‘stuff’ is not going away.

My typical kids realize that all this work Ronan does isn’t easy.  They see how he struggles and they cheer him on when I least expect it. Even when a family dinner at a restaurant is interrupted by sensory meltdowns forcing us to leave early, my other kids know that we tried.  They help pack up and get settled in the car without complaining. It stinks for now, but next time, we’ll know how to make it better.  I’m not really missing out on a ‘normal’ because we have life happening in front of us right now.

--
Cathy Jameson is a Contributing Editor of Age of Autism.

Comments

[Sarah]

While I was at the playground with my son the other day, my son bolted. I chose this particular playground b/c it is mostly fenced in except for one escape route which I had staked out.

As I as talking to another parent,
my son pulled a Houdini and squeezed through the railing and headed straight for a busy street. I couldn't get out the gate after him fast enough frantically yelling "stop that kid!"

As luck would have it, a woman who was walking a big very fluffy dog (fluffy dogs being a favorite of my sensory seeking son) happened to be passing by. He stopped and proceeded to give the pooch a great big bear hug.

When I caught up to him, he had the dog in a headlock, I smiled sheepishly as I pried my sons arms from around the dogs neck and explained to the woman that my son has autism and that I was glad the dog was there to stop him from running into the street. She looked at me, then him, then back at me again and just shook her head.

Not sure if her disapproval was pity or disgust over my out of control kid who's a dog strangler to boot but to me, at least, another close call was avoided. I felt very relieved. Thank god for big fluffy dogs.

So I look at that day at the park as a success. It's amazing how your standards change when your kid is on the spectrum.

[Marge Shea]

Dear Cathy,

It't an honor to be seen with you and your beautiful children in the park, restaurant or anyplace else. In my eyes, and many others, you are a family to be greatly admired.

Lovve, Marge

[michael framson]

Cathy,

nhokkanen wrote, "you paint masterpieces with words.

Exactly!

I thought I was reading a Norman Rockwell "Autism's American Life".

It was being painted right before my eyes.

Truly poignant.

[Elucidatus]

Cathy,

This was a heart touching story. You perfectly described what its like to be a parent of a child with Autism on the playground and also in trying our best to have a simple conversation with strangers. I hope Ronan is doing much better these days.

[Daniel]

Beautiful!
May G-d give us the wisdom to appreciate and enjoy our children exactly the way they are.

[nhokkanen]

Cathy, you paint masterpieces with words. You've captured such a vivid microcosm of life.

Oh, the eternal, infernal vigilance that keeps us holding our breath, ever wary...

[K Fuller Yuba City]

Beautiful post Cathy. A perfect example of Autism not only taking the life the child was meant to lead,but also changing the course for the whole family.
Our son is 17 now and he makes constant slow progress, but he still misses milestones continuously,No Driver's licence, no prom, no dates, no parties.
When will our club get so full that people will finally get it that something is happening to our children?

[allison]

And another thing:

My son is 12 now, and has many peers that I have watched grow up. Interestingly, so many of these boys that I once thought of as perfectly healthy have developed a myriad of problems. I am always aghast as I get to know a certain mom better, and she comes to me and starts asking "those" questions (can my son focus at school? does he ever get obsessed over one thing? etc). Though these boys are always the seemingly normal ones, turns out mom sees more similarities in our two boys than differences. Ahh, the mother instinct!

People often ask me, if mercury in vaccines was given to most everyone in the 90s, why did it not affect everyone? And I ask them right back "How do you know it didn't?" The vaccine injury spectrum is the perfect iceburg. Our kids, of course are the tip, the ones so easily seen. You put them on the baseball field and it won't take long for observers to see that something is not right. But what about the other players? How many are medicated? How many have horrible bowl problems? How many cannot sit still in class, or focus for more than five minutes? How many will drop dead at a young age from heart failure that simply cannot be explained? How many will be sterile, or have a much shorter life span because their immune system is shot to hell, because no one wanted them to get chicken pox, but they needed it to build a good working system?

Some people say "genetic predisposition", I say "Not so fast". Add ADHD, ADD, and sudden death of young people to the 1 in 100 with autism, THEN wait fifteen more years for the full affects to surface. The only healthy, the only normal, perhaps the only to survive long-term, will be those who heeded our warning and refused vaccination! May our children not have suffered and died in vain!

[allison]

Happy Mother's Day to everyone and thanks, Cat, for this. I know how you feel in so many ways.

I remember vividly when I realized I had entered a new world and was an alien among girlfriends, park gatherings and at PTA. Someone was talking about home decorating - some cloudy conversation about tableware and rugs and curtains. As I politely listened, I wanted to scream Who the h--- cares? Don't you understand what's happening to our children? I had absolutely nothing to add to such decor discussions and knew I never wanted to waste my time in one again. I do count it a blessing that God has helped me really see what is truly important.

However, He has taught me other things as well. Like the time I found myself riding with two other Moms to a school field trip for my typical child. I walked up feeling like a martian. One of the moms was excitedly taking pictures of her perfect son, making over his every move. I envisioned all the perfect albums she must have had time to create, all the memories captured over all the wonderful things they got to do. Knowing we couldn't possibly have anything in common, and struggling to be polite and chit chat, I was not looking forward to the shared ride. Then, didn't I feel a fool when it was revealed that this picture taking mom had developed the most severe form of brain cancer while she had been pregnant with that perfect child. Turns out she believed herself the recipient of a miracle just to have lived to see his first grade year, she refused to have anymore children because she did not know if she'd be alive to raise them, and she made the most over her son's every moment because she wasn't sure how many of his moments she would see. WOW! And I thought SHE could not understand ME! I'm still a martian, but I think there may be a lot of folks out there who aren't even remotely on the same planet as the normal folk. And with the rate of vaccines, normal is definitely shrinking!

[Christine]

Ah Cat! You may even remember this conversation we had a few years back.

I remember the day, the last day, I grieved for what was lost in Scott's autism.

I can not believe that this happend 4 years ago now. Sitting at soccer practice waiting for our oldest to finish up. I see all of these little boys, about the same age as Scott then - maybe 6 or so, they are running and wrestling each other, rolling down the hill and kicking balls back and forth. I looked over at Scott, who should have been in the middle of that rucous, and he is playing with the trash can lid. Excited about how it rocked back and forth when he pushed it. I looked once again back at those typical boys doing typical things and burst into tears.

I wanted so badly for Scott to jump right in and get hurt doing those typical little boy things. Instead he plays with the garbage can lids.

I remember leaving the field, telling Brian I would be back soon. I went and cried in the car for nearly an hour.

That was the last day I cried for the typical boy that we wanted so badly.

When I went back to the field I grabbed Scott and squeeze him hard and promised to love everything that he enjoyed. Even though it may not be a "typical" little boy action.

He still plays with those garbage lids. But now I take pictures and smile, because HE IS HAPPY!

[Carolyn Gammicchia]

Happy Mother's Day all. As a mother of a now eighteen year old son I saw myself in many of this incidents you described Cat. Autism is something that can not only be consuming, but can isolate and segregate us from our sense of belonging within our communities.

We quickly realized though that we had to make choices to not allow that to occur. We as a family had "Aquired Autism" and it was actually handicapping us all. Please don't be offended too by my choice of words, but that really was how we felt. Not until our RDI professional sat us down and told us to simplify and go back to the folks we were before autism took over could we really see what we had become.

I urge parents also to not have expectations that others will know what your life is like. I remember often having the same thoughts you describe Cat, about what was seemingly lost. However I realized when my husband told me that my expectations of others to understand our son was to high, I knew he was right.
We can't expect others to realize what goes on in our lives unless they experience it themselves 24/7. Should folks be compassionate? Yes but if they cannot tell what is affecting our child, then we do need realize that as well.

Can we educated others and bring awareness to the challenges families may face daily? Yes and we need to do so much more of this. However we also have to make choices, especially for our entire family, to ensure that we are looking at that glass as being half full, bow our heads, and hedge forward.

Additionally it does assist when you look at those trips in the community as a triumph, no matter if for only 5 minutes initially because they will grow to ten, twenty, thirty. Our kids can and will be able to be viable members of their communities if we open those paths no matter their abilities, we've seen this happen with our son who was very affected by his ASD at one time.

It's our responsibility to be strong and do so, no matter the stares, no matter the lack of empathy. If we don't we are inturn not allowing our children to blossom in my mind. All our kids are achieving daily by living with their ASD and we can cherish those minute accomplishments that make us all such great parents and better people overall.
Perfection is over-rated in my mind, "normal is boring" as one of our son's Ts indicates and though I now actually can take time to coordinate an outfit, I look back at the more challenging years and realize those have made me stronger. I'm tired as hell, but gearing up for the next challenge does seem so difficult.

[Maurine Meleck]

There are enough of us aliens now that we really should no longer feel alien. Thanks, Kathy for this great post. Happy Mother's Day to one and all.
Maurine

[Twyla]

Thank you so much for this -- so vivid and real.

[Teresa Conrick]

Happy Mother's Day, Cat!

You describe many thoughts and feelings that I know I have had in the past 14 years with autism in my life. It is a hard road but knowing so many of us are on that road, sharing our beautiful children and abundant support, it makes it easier.

Have a wonderful day knowing that being a warrior isn't always pretty and ironed but it is so much more interesting and will change history for so many.

See you at Autism One!

[Katie Wright]

A wonderful post Cathy.

You captured exactly what I feel on the playground. I feel like an an alien sometimes because I see other families having such a different experience. When I am just w/ Christian, however, I do crave some conversation- about almost anything- but it is impossible for anyone to converse with me because I have to shadow Christian very carefully. It can be very lonely. But if Christian is having a good day that does make me happy.

[Gatogorra]

Thank you for this, Cathy. I know first hand that the more we "get out there" with our kids, the more little incidents might pile up and sensitize us. The kids who play "keepaway" from my kids and never include them. The inactive staring from adults if one (or both) of the twins have a public meltdown. The inevitable sneering eight year old who asks why my son is laughing maniacally at the soccer game across the field.

In winter, with less opportunity to get the kids out into crowds of other children and families, the less sensitive I feel-- so I happen to know that that raw feeling is a side effect of being a dedicated parent who's creating every opportunity for kids to experience things and flourish. With less incidents to wear us down, we might feel tougher. But if it's not winter, that can be a side effect of hiding.

As far as the perfect families-- I don't know. We once had the perfect everything and all that before children and now it just looks sickeningly precarious to me, like watching people walking towards the edge of a cliff with their eyes closed. We could have the external "polish" again at least for ourselves if we gave up trying to save the kids too, but that's impossible.

And I remember when everything seemed "perfect", I still *felt* something wrong with the world and felt uncomfortable but couldn't put my finger on what it was. Now I know and am the better for it-- not knowing but sensing is hell. I can't envy that ignorance/innocence. I only wish I could have read about it in a book instead of my children having to pay the price of the wake-up call.

Also, "perfect people" come in many forms.
If people don't have the wherewithall to sense what's going wrong in the world and at least be uncomfortable with it, I can't see them as perfect. They just seem thick to me; not enviable. If they don't care, they're part of the problem and seem uglier.

Truly happy people are friendly, generous, open minded and sensitive to what's going on around them and they're often ready-made friends. Even if they're not in the same boat as us, there's something relatable there because they want to stay out of that boat and I want them to say out because there's no more room in it and the more people are aware, the more likely the problem can be stopped. I've made a few friends along the way from that category, like our neighbors with their perfect children and grandchildren. They give us speeches about our parenting that make me cry and thank us for the "heads up" we give about children's health issues. Now that's perfect.

If I was on that playground, you would seem the most beautiful and perfect to me. Putting children above all else is the only glamour. Happy Mother's Day, Cat, and thank you again for all you do.

[Pamela]

You are a beautiful person Cathy. Though my daughter has recovered, I can so clearly relate to everything you have expressed here. The inability to relax, the being on high alert at all times with other parents looking at me like "what's your problem lady?"

My daughter's toddler years were sooo difficult and it pains me, in just the way you have described, when I see high functioning kids struggling with no one around them understanding why. It pains me for the child and it pains me greatly for the parents who are so frustrated and confused. I was the mother of one of those high functioning kids and before we understood our daughters issues, I can remember asking myself, "Why is everything so hard, is it supposed to be this hard?"

I now have two typical children yet every time I am out somewhere and see parents struggling I feel like I am yanked right back into those years...a sort of post traumatic stress that leaves me owning all that frustration and worry all over again.

My prayer this Mother's Day is that all of you who are working so hard to recover your babies get the same recovery we have been blessed with because you certainly deserve to find that for your child and that all those parents struggling with children they don't understand will find their way to diagnosis and to treatment.

Happy Mother's Day Warrior Moms! I know there is a special place in heaven for those willing to fight so valiantly for their children.

[ginnie]

always painful to have the real-life reminders of how easy it is for neurotypical children to instantly absorb what you've spent countless hours trying to teach your child. everytime i make those upward comparisons i try to balance it with the downward comparisons and think of the parents who were not even able to take their kids out in public that day and the ones who will never experience a neurotypical child. and the best comparison, when my child was struggling even more than he is today. it really helps me to have this site and community and i think of you all putting in a good fight for your child when i'm having a particularly hard day.
the high grooming and appearance focus has always seemed to be more of a sign of overcompensation rather than perfection.
but of course it's the easiest to cope with these situations when you have a parent of a neurotypical child come up to you and thank you for taking the hit to protect the herd immunity!

[anonymous]

lovely article.

i used to feel jealous of "normal" "perfect" families too until i realized you never know what is going on. perhaps the husband or wife is having an affair, perhaps they had a child that died. you just never know.

[AnaB]

Of course we can't help but notice the seeming perfection and ease all around us. Yet, all the things parents of typical kids have to deal with that I never will aret lost on me either. I don't have to worry for my child about drug addiction, promiscuity, alchohol problems, excessive material wants, a kid who sneaks out (okay, maybe I do there, but with different intentions).

Some of those perfect moms and dads you saw in the park may be watching a parent of their own own wither away before their eyes from Alzheimer's, or have a spouse suffer through cancer, or be dying themselves, or have lost a spouse or child or a sibling in a tragic death, or have a serious mental illness. My point is not to minimize our circumstances, which are profound, but just to say everyone is struggling with something, and that something often that something is big.

There is a unique isolation reserved for families of Autistic children where that child is the only child. We are pretty much cut off from the culture of parenthood. I don't know my neighbors beyond saying hello. You get to know the children on your street through your children playing with theirs and that doesn't happen. He doesn't play sports, have play dates or friends.
I have to remind myself, I always remind myself, it could be worse. We have the resources to meet his therapy needs, which we did not when he was a toddler. He communicates better and better every week...........

[Bob Moffitt]

Happy mother's day Cathy .. it sounds like all your kids really lucked out having you for their mom.

Happy mother's day to ALL the moms who read Age of Autism today. May your day be special in every way.