As some of you readers know, Wally and I have been considering the idea of having Payton tested for high-functioning autism/Asperger’s syndrome. We know and have always known from the day of his birth that he is different. Payton is not and never will be your typical kid.
As parents, we’ve have struggled with the different and asked ourselves questions…what it means, how do we handle it, is it ok?
Now, that last question is the interesting one…..is it ok?
Is it?
Of course, like most people, I like to think I’m above many social ideas of conformity. That I embrace individuality and uniqueness and different ways of doing things. That I don’t place too much value on fitting in and being like everyone else.
But do I really?
It’s hard for me to hear Payton’s teacher describe him as intellectually well above average (yay!) but socially and emotionally far below average. (oh.) It’s even harder to read the characteristics of Asperger’s and say yes, yes, and yes over and over to the behaviors that match my son. It isn’t easy to hear and read these things and not get swept up in the wrongness of it all.
How could I hear the word autism describe my son without feeling fear, without being scared shitless? Who could when autism is immersed with words such as ‘disability’ and ‘abnormal’ and the real kicker, ‘life long developmental disorder.”
And while I know the higher functioning autisms aren’t the death sentence of autistic diagnosis, you can’t separate it from autism and the meaning of that word. People still see it as a disability, disorder….abnormal. Were Asperger’s classified as some form of giftedness (as I think it should be) then I might be all over the label. But it isn’t. It’s considered a disability.
When I hear that phrase and words such as disability, inability, impairment and disorder, I hit a road block when it comes to taking that step to diagnose Payton. And I’ve stayed at that road block for a year and a half now.
Disabled? For life? Impaired? Disordered? Are we talking about my son?
I don’t think so.
Maybe I’m in denial. But maybe I’m not. Maybe my son isn’t the one disordered here.
I’ve read the books. God, I’ve read the books. I know how he is.
I know that he doesn’t interact with his peers or seem to even want to interact with peers. Except, he does. He does interact, just not like most kids. He chooses peers that are smarter than average, kinder than average and more accepting of differences than the average 6 year old. How many 6 year olds out there would fit those qualifications?
So yes, he has maybe one kid in his class that he calls friend. But he has a lot of older kids he likes. And he knows how to talk to and relate to adults better than I do. He intuitively knows the kind of people he should surround himself with; those who will only lift him higher and support him in who he is as he is. My little boy understands and embraces diversity of friendship…..of true friendship.
How many adults can do that? Hell, I struggle to define true friendship, realizing friends are not just other females in my age range. But because a 6 year can do what most adults struggle to do, it is “impaired”? Is that what we really want to call it?
I know that Payton is intense — both emotional and sensory. His mad isn’t just any mad. His happy isn’t just any happy. His tantrums aren’t just any tantrum. Shit, he’s almost 7 and still has tantrums.
A loud, noisy crowd isn’t just any loud, noisy crowd to him. His ears….oh, his ears! He feels it all on a level I don’t. And since he feels emotions & sensations to the fullest, he expresses it to the fullest too. Yet somehow his ability to feel and express these things on higher level than most is considered abnormal.
Why?
In a society where there is a pill for every ill, more and more people on anti-depressants and anti-anxiety meds, you would think it would do the societal body good to take a feather from my son’s cap. Because society’s attitude of stuffing our feelings has led to what…..???? An emotionally healthier society? (snort) Is HE the abnormal one?
I admit, Payton prefers and needs calm and quiet. He needs time to take in the silence and just relax. He needs to escape from the crazy go-go-go of our society in order to think and feel his best.
What type of world would we have if society at large did that too?
I watch Payton run and walk, and his body movements when he’s excited or talking to someone. And I suppose someone could say he isn’t graceful. That he’s clumsy. That he gesticulates in a strange way. He jerks his body, throws out his leg and yes, even flaps his hands. A lot. He doesn’t make a lot of eye contact either. And I have to wonder….
So the fuck what. Who in the hell is that hurting? The only person I could see it hurting would be Payton, and only if some small-minded ass of a person made fun of him for it. So then, who has the real problem? It isn’t Payton.
And my boy is focused, persistent, passionate, absorbed…..aka fixated….on the ocean. There are times, and more than a few, where my eyes glaze over and my ears tune him out because I’m beyond caring about the current conversation of the size, or lack thereof, of a crab brain. And he has no clue I don’t care and am no longer a part of the conversation. Because to him, it’s the most fascinating thing in the world and he has slipped from the world of people and has immersed himself in a world of things…a world where the mere existence of a fish or crab or shark is a wonder beyond all wonders.
Sometimes I go to that world with him and, oh my God. Literally.
I wonder how often Einstein spoke of math until the adults around him glazed over?
And I just don’t get it. I don’t get why this is considered abnormal. Payton has a vast, deep and passionate understanding of one subject and that is disordered? That style of thinking is valued less in our society than a general, shallow understanding of power rangers, wrestling and spit ball fights?
I have a son who is sensitive, emotional, expressive, diverse, intense, reflective, intuitive, detailed, persistent, focused, extremely intelligent, and above the influence of others. But doctors and psychologist can take those positive attributes, re-word it, and turn it into a ‘life long development disorder”.
Why?
Why are those things about my son wrong? Why does society want to label it as a disorder?
Is it because if we looked at people like my son….really looked at who they are and what they can do….we know we aren’t the normal ones here? I don’t know. Do we feel inferior in our simple averageness when compared to them? Maybe we do and it scares us. Do we value the standard of mediocrity and averageness that damn much? It seems so.
Oh, as an American society we claim to embrace diversity and genius and out-of-the-box thinking.
But do you think we really do?
From my perspective, I don’t think we do.
And I realized I myself didn’t embrace acceptance and difference far enough. That’s all changing.
I will not believe my son is disordered. What is impaired and disordered is a society where, in order to gain some level of understanding and acceptance of differences, a child has to be considered abnormal.
The developmental delay is in society, not in my son.
My son is here to show the way.
“To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.” – Ralph Waldo Emerson
This is dedicated to my son, Payton, Prince of Sharks. Here’s to you and all that you are. Mom and Dad are here to support you in what will be your greatest accomplishment.
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Heather, the Heir is so lucky to have you as a mother. I know you sometimes feel frustrated by not knowing what’s going on in his head, but I think you may have a unique understanding of your son that most parents will never have with their children. I think you are giving the Heir exactly what he needs, labels be damned! You are letting him be himself and you are loving him unconditionaly. That’s what being a good mother is all about.
Jennifer
That was stunningly beautiful.
I am 100% in touch with your blog. We had the oldest tested at age 5, and after having him MAINSTREAMED in a regular prek k inclusion class, we were amazed at the changes we saw in behavior and speech. Have you checked into your local infants and toddlers program???? Here in Maryland we have alot of resources! The best advice I can give is ….
1) go with your gut
2) For the autism testing, seek out a developmental pediatrician.
3) Have him evaled by speech and language professionals.
My kids didnt end up with aspergers ( they susupected it at one point), and now that we got the early testing and early intervention, we have moved DOWN the austim spectrum and found our place at ADHD/OCD. We have the Daytana patch, and we saw results in 6 hours!!!!!!!!!! Email me off like if you like!
Deb
I just wrote elsewhere (not on my own blog) about the limitations that labels create. Our need to label and categorize everything is dizzyingly frustrating to me.
I have enough trouble categorizing my blog posts, let alone humans.
As far as meds go, I’ve always been on the fence on that one. I’m a big believer in at least meds along with some kind of therapy or counseling. My degree is in psychology, I worked in a mental health ward, yet I’ve never been able to decide definitively.
For the most part, I don’t decide just for decision’s sake. It’s never that black and white, so why create your blanket opinion and smother others with it? “You” being the plural “you.” The only time I wish I spoke more fluent Spanish.
I understand that the need for the label for the Heir is, in part, to decide whether or not some kind of treatment or structured approach should be started. But if we just didn’t need that label…
He’s not disabled, he’s abled in ways the rest of us will never understand and we as a society need boys like Payton to teach us about passion and to discover things about the ocean the rest of us are too lazy to find out for ourselves.
Everyone is going to be teased in gradeschool about something at some point or another, it’s the way it’s handled that makes the difference. And with that you are doing a superb job.
I went to school with a kid very similar to what you describe Payton as (as we all know autism wasn’t “big” back then…)and I just found him online with his masters from MIT and working on his doctorate at Stanford. Who knows how many friends he has, how many do we all really need? He’s happy, he’s successful and by dang he’s contributing to society in a way a lot of us never could.
I remember his parents well also, supportive, kind and strong. What more could he ask for?
This was a beautiful post. If only there were easier questions and answers. You’re doing wonderfully. I marvel at your strength and resolve.
Great post again, Heather. The Heir is a lucky boy. He may be different than the norm, but he is not so different that he can’t be successful, happy…
A label won’t change Payton, but will it change everyone else’s perception of him? maybe. Will a label help him in life? Maybe for helping the outside world understand him better, but maybe it wouldn’t do anything for him.
“Do we feel inferior in our simple averageness when compared to them? Maybe we do and it scares us. Do we value the standard of mediocrity and averageness that damn much? It seems so.”
These were the very thoughts going through my mind as I was reading your post.
As mothers I believe one of our important roles is to advocate for our kids when the need arises – you will be one heck of an advocate for the Heir. Great things ahead for all of you – I know it!
What a beautiful, thoughtful, and thought-provoking post. Your son sounds like a wonderful little boy, and how refreshing to hear you say what makes him so amazing. I’ll be tuning in for more!
I admire your strength and courage .
It’s so very clear that you love Payton with all of your being and will ensure that he suffers minimal (if any) effect from any “label” medical professionals might use to try and pin him down.
He’s an exceptional little boy with an equally exceptional mom.
I hope I didnt offend anyone by saying my son is on meds. We only used that as our last ultimate option. My husband and I are were initally completely against medicating our son, but when we explored everything we have done as far as getting him into more activities that were structured, with smaller class sizes, physical activities, lots of wrestling with dad to get out that energy, and private instruction for some things, we noticed; that in conjunction with the medicine, we had reached the goal we saw for our childs health and learning. We see more focus, ALOT less tantrums, hardly any at all. The best thing has been how much his behavior has rubbed off on his younger brother, who has recently been diagnosed, and how much it has made a diffrence in his learning at school.
It is a shame that kids are pretty much labeled just so they can get proper therapy or services, that is the only benefit of labeling, is for the professional end. I have often times had parents ask me if my son has OCD or ADHD, out of the blue, and Im wodnering how they can just look at a child and see it???????? ONe mom said it was because my son wouldnt talk to her…. HELLO WE TOLD HIM NOT TO TALK TO STRANGERS!
If anything, continue the support for your son, he is very lucky to have such a loving mom.
No offense Deb. Your son is not my son and I’m certainly not one to say what is right for you and yours.
see, I KNEW you were a good mom and now you’ve proven that you’re not, you’re actually a GREAT AMAZING and UNUSUALLY INSIGHTFUL mom!
Prince of Sharks. How gorgeous
Heather, this one made me cry. You’re an awesome woman. And an even awesome-er Mommy.
Once again you have written such a beautiful tribute to your one-of-a-kind son.
In our case labels HAVE been helpful. After extensive testing and a variety of different therapies it was helpful to know exactly what we were dealing with and how best to proceed.
It’s also been helpful in terms of educating other family and friends that are integral parts of our son’s life.
Does my son’s label bother me at times? Of course. Do I worry about the repurcussions in school and later in life? Who wouldn’t? But (and this is a BIG but) I worry more about the repurcussions of someone not knowing Sweet Boy has this disability and mis-attributing (is that a word?) something he does to ignorance or rudeness when in fact it was directly related to the Aspergers.
Well said, Heather. He is a lucky boy to have you for a mom.
So true, I agree with the above post! I also know, and this is bad but if your child does something in school related to their diagnosis, they help them see the wrong in it, and they dont punish until they know the kid abosultely knows the right from wrong. My son has specific “fixations” if you will, and with the school knowing that, sometimes that info actually haelped them in using the fixations to an advantage, in terms of learning! I do still hate when the actual diagnosis is brought up and Im once again reinded of what we are dealing with. The hardest problem WAS transition times, now its barely anything at all. Its a beautiful posst that you did!
Hang in there… I am really enjoying your blog.
Awesome post…and i completely agree. Its society that has an impairment.
You are such an awesome mom! I totally agree with you. There is a song, I can’t remember the words to it, but it’s about Daly City where all of the houses look like boxes. That’s exactly how kids are classified (and taught); if you don’t look/act like a box, then you are out of the norm. But so many things have been accomplished by bright and intelligent people that would not have been considered normal today; and had they had some kind of diagnosis, who knows if they would have ever accomplished those things. I don’t know if it’s right or wrong to have a diagnosis done, I really can’t speak for that; but I can totally feel your struggle with this and how much you love The Heir. He is so lucky that you are his mom.
The perception of these kids by others seems to be a common concern, one I’ve had myself. We certainly took that into consideration when deciding not to test him. Especially now that he is in school where there is more outside influence than before. I understand that viewpoint of dx’ing.
However, I’ve come to believe that if others perceive my son in a negative light, that is their problem. My job, as the parent, is to support my child in knowing HIS truth…that he is NOT bad or wrong. And once he knows that truth, then what other people think doesn’t matter.
If I spend my life worrying how others may or may not perceive me or my loved ones, then I’m not living. I’m not free to be me and who I am. I’m limiting myself by other people’s mind.
I’ve had those worries…I still do some…of how others will perceive and then treat Payton. But that is why I brought up that I’ve had to deeply question exactly how much I buy into the arbitrary rules of mainstream society, which ones I let influence me, and why. I think it’s going to be a very interesting discovery of myself and wow…i can’t wait to see how it changes my view of lots of things, including my son!
Wow.
He is so lucky to have YOU as his mom.
Beautiful.
I love reading your blog…
Everytime you pour your heart out from on top of your soap box… I stand in the crowd below with my little “Go Queen” sign.
{hugz}
What a thought-provoking post, beautifully written. It is so obvious the love you have for Payton. Even though we do have the label it has become our normal. And I’ve come to accept that it’s okay and even revel in it. I don’t care much what others think of the label, only that people learn to love and respect my boys for their uniqueness. The Heir is a lucky little boy and you sound like an awesome mom.
My 5 year old starts his assessment on Wednesday. I am relieved in a way – I want to be able to understand him better so I can be the kind of mom he needs (sans medication).
I will not let this define him, I am using the assessments as a tool. I am tired of being angry with him for things I am coming to realize he can’t help.
Thank you for this post – it will be on my mind this Wednesday.
Sometimes I wonder if we are culturally too interested in giving people labels. At what point is something (or someone) so far outside the norm that this is appropriate? But I have also benefitted from seeing a description and better understanding someone because of it. I had a coworker who used to drive me nuts. When we talked about aspergers, I understood that a lot of her behaviors were to a great extent outside of her control (instead of thinking them deliberate efforts to annoy me). Our working relationship improved vastly after that.
Some may assume that a child labeled may be abnormal or scary, but hopefully a label can also help people understand the child ‘s needs.
In any case, good luck to you and yours.
I popped over here from Oh The Joys. Love your post here. Really, what is normal?! I just wanted to share a book with you. It may be a little early, since you’re just considering even having your young son tested, but there’s a man who takes all the fear out of Asberger’s and Autism Spectrum Disorders in general. He’s a man on the spectrum and was key note at an Autism Conference I attended this past spring. His name is Stephen Shore and his book is Beyond the Wall. I haven’t finished it, but if it’s as good as his speech – I’m sure it’s great. It’s on my to-read list this summer.
Good luck with everything. Your unconditional love means so much to your little man, more than he could certainly ever tell you. You are his biggest advocate, he is lucky to have you.
You are such a brave woman, and he is such a lucky boy to have a mom like you.
Different is not a bad thing…I’ve been preaching that for over a decade now. Hopefully one day it will sink in…until then we have to keep fighting against the stereotypes that society creates.
You love your son because of who he is, not despite who he is…and that’s a wonderful thing.
Nonlineargirl: In my mind, people should be able to understand a child’s needs without a label, not the other way around. The idea that people need a label in order to open up their own understanding to someone not typical is what needs to be addressed…IMO.
Is the label for the child or more for everyone else to feel comfortable with the child? I’m not sure at this point. It’s a question I think is worthy of examination. Perhaps a blog topic for another day….
Ohama Mama: Thanks for stopping by. OTJ rocks…I have a tremendous amount of blog-envy of OTJ. But I guess I should clarify: We aren’t just considering having our son tested. We’ve considered for quite a while and now that decision has been made. We are not testing him.
Awesome post Heather. He is lucky to have you for a mother. You are a REAL queen.
Just stumbled upon your blog through Girl’s gone Child blog. My dd is 4 and recently dx with Asperger’s. She sounds exactly like the Heir. I stuggled with everything you are struggling with, particularly how a label can hinder. Here’s why I decided to accept the dx and not freak out about the label: I decided to seek out adults with Asperger’s. There are tons of blogs on the net written by autistic adults. There are also several books. I highly recommend Pretending to Be Normal. Every single one – every single adult – I’ve met 100s now through a support group say they SO wish they had been dx as children or had been told by their parents. They constantly wondered WHY they were different and it would have given them peace to understand that their brain was wired differently.
You are keep going back to the term what is “normal” or different. The term normal no longer exists. Neurotypical is the correct term. Being on the spectrum simply means your brain is wired a little differently. It certainly doesn’t mean “less than.” There is even a neurodiversity movement going on.
He is still your boy. Nothing changes with a dx. Do not be afraid. It’s going to be okay. – Missy
My son, JP, received his autism label just before 3. There was no doubt that he had autism. He has come so far today that you wouldn’t believe he was given such a label. However, the label still exists – high functioning autism. I am a new visitor but in reading your post, you could have been describing my son.
Here is my concern (you can take it or leave it). JP’s label is getting extra time with the school staff where they can work on social skills/hidden curriculum items. These are things that his brilliant but literal mind just doesn’t pick up on his own. These skills are going to be integral for him to sustain friendships and hold down a job. Many asperger adults are brilliant yet underemployed because of their underdeveloped social skills.
Right now I feel like JP is caught between the autism and asperger worlds. I am thankful for our history with the autism label because he is continuing to get guidance. But it is bizarre to me to see other children (who are just like him) not getting any help naviagating our socially mixed up world.
Like anon before me said, many adults on the spectrum state that they are thankful once they realize that they do in fact process things differently. I think the label in some cases brings them peace.
I know that a label is a double edged sword and I truly do understand your concerns. You sound like a wonderful mother. I have no doubt that Payton will go far — label or no label!
I love how you have everything related to Payton categorized now, just love it. Wanted to let you know of a book I just finished, that had a few good, thought provoking points. Book is called “Living with Intensity” by Sue Daniels. She explores emotions and the gifted child’s mind. It was really eye opening. Just wanted to pass this info. on to you, it is good reading.