Mom of The Odd Boy Out
Posted by Heather in Mommy Moments No One Talks About, Rare Moments of SeriousnessToday I volunteered at Payton’s school. It’s teacher appreciation week, so moms are needed to take the kids to the cafeteria so teachers can have a duty-free lunch. Since I’m one of the few moms who work part-time instead of full-time, I got the call.
I’ve been told by his teacher teacher of how he acts during lunch. How he doesn’t interact with the other kids during this usual social highlight of a school day. How he seems to withdraw into his own world and doesn’t really carry on conversations with the kids or act like he even cares to be there. I was aware that was part of his odd behaviors.
But hearing it and seeing it are two different things…
Today I saw for myself that in a cafeteria full of peers Payton withdraws to another place and seems to be all alone in a room full of people. After 15 minutes in there and 3 more classes make their way in, the din of voices rises and I see him pull at his bangs and rub his forehead — a sign I know means the noise of it all is beginning to hurt his head. As I watch from the other table, as I’m peeling an orange and cleaning up spilled milk, I know he is struggling to handle it all and keep it together.
Right then and there I wanted to cry because I see how the simple act of eating lunch at school is different for him. That it isn’t a happy, social event where you cut up a bit and play with your friend. It’s not like it was for me and the vast majority of other kids. Instead it means he withdraws in order to handle the physical pain in his ears and head, and that he has probably had to do this every day, 5 days a week, for the last 9 months.
My heart breaks for my odd boy out.
You’d think I would get use to this — being mom to the odd boy out. It’s always been that way, and I’ve been that mom for 6.5 years now. But I’m not use to it. I talk a good talk by voicing the positives of his unique/odd/whatever you want to call it behavior. But walking the walk is much, much harder.
I feel like I’m in the midst of chaos right now and I don’t know what to think. I’m leaving the mental safety of blaming myself; a place where his behavior was my fault, but it was safe because I could change what I did, so it’s really me and not him.
Now that road is behind me and I’m on a dirt road where the doctor cannot tell me whether my child is autistic or highly gifted. Yesterday I’m told that their neurologist would likely diagnosis him as autistic but….BUT.
That is an official, medical BUT.
Payton seems to be falling into a gray area of uncertainty. It could be that instead of autistic, he is highly gifted and the social/emotional problems we see are actually a common thing in highly gifted people.
It seems that Payton continues his pattern of leaving everyone scratching their head in wonder by not fitting into any one category. His doctor tells us that we’re in a unique, and not very easy position of having to decide which way we should proceed….down the road of probable autistic diagnosis or the road of possible highly-gifted mind.
Suddenly, the weight of parenthood is fully upon my shoulders like it has never been before. On the outside I’m sure it seems like an easy answer. What parent wants their child to be autistic? And what parent wouldn’t want their child to have a gifted mind? But the weight of the responsibility is there despite outside appearance.
Whichever path we choose, Payton has no choice but to follow us because he is a child and we have to decide this for him.
What if we decide wrong? What if we decide to take the gifted route and he begins to slide instead of thrive because he isn’t getting any type of therapy or accommodations at school? What about the years of early intervention we’ve already missed and could continue to miss in these early education years? What if his odd behaviors are not accepted by others but a diagnosis would bring acceptance and understanding to him? How can we ignore the obvious characteristics of autism that fit our son? Is this denial? Or faith?
Then there is the other path.
What if we decide to have him diagnosed and his world is now shaped by a developmental disability and all along his life could have been shaped as gifted instead? What if he is gifted and we can shape the way others perceive him in a positive way instead? What if we can’t shape people’s perceptions? What would happen to his self-esteem, his belief in himself to know he has this disorder? Especially if he were to find out we could have went a different way.
The decision can’t be made lightly. I have no way of knowing the long-term effects of either path. And I have no way of knowing whether I will get this right and be the person it is going to take raise this child well.
We’re at a crossroad where I am overwhelmed with the responsibility of how I will shape this other life. And not just any other life but the life of a person who I love beyond all things, and who innately trusts me with his life. I cannot afford to make a mistake.
As I stood in that cafeteria, I found myself wishing he were average. I wished he were less than he is and that is wrong. It isn’t fair to Payton.
What I really want is what all moms want….for their child to be happy and accepted for who they are. But I’m defining happiness and acceptance from my very average and typical mind and what it means to me. What does it for mean for him?
I’m left wishing I could get inside his mind and just understand. To know that despite how my very average mind sees it, that he is happy and feels accepted by those around him. That he doesn’t feel like the odd boy out.
So not only am I at this crossroad of decision, I am also forced to redefine what happiness, acceptance, friendship, and normal means. I obviously can’t continue to judge it by societal standards regardless of which road we take.
I’ve never felt less grounded in my life. I feel like I’ve been taken from my regular place of existence and shoved into a world I don’t know and I don’t even know which way to go for answers.
I wonder if that is how Payton feels a lot of the time too.
It seems as if my life as mom of the odd boy out will always be a dirt road to somewhere unchartered and new.
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I wish that I had some great words of wisdom for you but I don’t so I am just going to say Stay Strong. For him and for you.
Oh wow, I totally feel for you. Having a child that’s different, who you struggle to understand- it takes a very strong parent to deal with that. But I think something you said, “But I’m defining happiness and acceptance from my very average and typical mind and what it means to me. What does it for mean for the Heir?” makes me think you’ll be ok. You’re obviously wise in the way you’re approaching this, and you’ll do what’s best for the heir. Just trust yourselves, try not to second-guess once you make a decision, and know you’re doing the best that you can.
You will make the right decision. And that is because the right decision is the one that you make because you are doing what you can to understand him. By putting him before you, that will make your decision the right one.
I marvel at your strength and hope that I can help give you more, should you ever need it.
Did you know that most autistic children are gifted? A lot of times an anti-anxiety medication can help. My close friend has a 10 yo who is High Functioning Autistic(HFA). He is a wonderful child.
Have you checked out Rebecca’s blog ? Her 3 yo is HFA.
Good luck- You are strong enough to endure whatever comes your way!
Heather, I can’t even imagine what you’re going through. Thanks for sharing with us. You’re a strong mother. The Heir is blessed to have you as his advocate.
I think Toni has a point, while you do still have the decision to make to pursue a diagnosis or not, keep in mind having a label put there does not doom him to a lifetime of LD classes. He obviously IS gifted, and the school is not going to overlook that just because they would have to take other things into consideration. Getting him help for the social and emotional issues won’t negate his need for mental stimulation.
You know we will support you in whatever you decide.
Yes Toni, we know that most are. But where is the line between the two? When does gifted cross over into autistic too? And in the Heir’s case (because I am not anti-meds and know they valuable & needed for some people) would the anti-anxiety meds be for him? or for me? Unless he begins to show signs of stress or anxiety, then would I be medicating him to “normalize” him so to speak? I don’t feel that there are any clear answers to all of the questions hanging in the air right now.
And Sara, I also have to wonder since the school already recognizes his giftedness, why would he have to have a label to get them to understand that his mind works in a different way and take that into consideration anyway? Do I need that label for people to be more accepting of differences and individual challenges? Or would we be able to shape the perspective by taking a different approach? I honestly don’t know either way. The answerless questions just seem to pile up.
My firstborn was in this same category, and we took him to a pediatric neurologist when he was four, because we wanted to know what his situation was: I felt it would give us more information to proceed, rather than leaving us in the mire of doubt you’re currently in, which I remember. The neurologist said he wasn’t autistic, didn’t have Asperger’s, and we were relieved to be able to rule those things out.
I think that in general, more information = better. If you and your husband get more information, that doesn’t mean you have to give it to the school if you don’t want him labeled there. And finding out that x or y is the situation doesn’t mean you have to take step z: even if medication is recommended for a situation, that doesn’t mean you have to do so. And having a “label” is sometimes a good way to access the services (such as gifted programs, which are more understanding of certain traits) he needs to be more comfortable.
I don’t have any answers for you but I am here if you need to talk. I think you are a great mom and I know you will do the right thing for him.
“And I have no way of knowing whether I will get this right and be the person it is going to take raise this child well. We’re at a crossroad where I am overwhelmed with the responsibility of how I will shape this other life. And not just any other life but the life of a person who I love beyond all things and who innately trusts me with his life.”
This is the part that brought tears to my eyes. I know these feelings. I feel this pressure everyday. I’m so afraid that seemingly little decisions to do “X” or “Y” or more often NOT TO DO “X” or “Y” are going to affect Sweet Boy’s life for the worse. But then in my fleeting moments of semi-confidence, I also know that I am the BEST mom for him. Just like YOU are the best person to raise the HEIR precisely because you love him more than anything else (and I truly believe there is a fierceness to the love we feel for our special kids) and because you are obviously so in tune with what he is going through and what he can and can’t handle.
Random thoughts (it’s late and I’m fried):
–I was away from my computer all day today. I so wish I had seen and responded to this post earlier.
–Reading your description of lunch, I felt like I was with you in that cafeteria. It’s heartbreaking to see our children in their own little Hell-on-Earth when other kids are laughing and having a carefree good ‘ole time.
–My son isn’t gifted. He’s bright but not gifted (we suspected this and IQ tests confirmed it). However, as you know, many kids with Asperger’s are gifted. I’m guessing it’s easier for the school system to label the Heir as “autistic” or “gifted” because they don’t really see Aspergers as being on the spectrum. Sweet Boy qualified for practically no services for this very reason. But Asperger’s is a medical diagnosis (DSM) so a school psychologist isn’t really qualified to make or refute it.
–My son has been taking an off label medication to help with the Aspergers for almost a year now. It took several months to titrate up to a therapeutic dose. It’s not an ADD medicine; in fact, no doctors in the MD/VA/DC area prescribe it. It was prescribed by a pediatric neurologist in Boston who specializes in treating kids with Asperger’s. This treatment is part of a study he has been conducting for several years now (with great success and little to no side effects). My son’s Asperger’s is still a major part of our lives (obviously, no medication is going to change him nor we would never want it to) but the medication has made a SIGNFICANT improvement in his quality of life. It took us a long time to reach a point where we were even willing to consider medication. I would be happy to go into more detail and/or give you this neurologist’s phone number if you’re ever interested. He’s in Wellesley, MA, and he really GETS how hard this is for the whole family unit.
Honestly, I hope this doesn’t sound stalkerish, but I almost wish I could hop in my car right now and pop over to your house just to listen. Let me know if you ever want my email or phone number.
To quote a lovely blogger, you parent the child you have — and you love him even more.
Your words speak volumes about how well you know your son — and that’s the first step in all of this (the music therapist who has worked with kids for many years speaking here).
I have no words of wisdom for you, but your post shows that you pour your heart and soul into this child; and because of that there is no way you could possibly make a “wrong” decision, or guide him down the wrong path. You will do what’s right for him. He is incredibly blessed to have you as his mother.
That does seem like a very hard place to be. Very frustrating. But you have such a desire to do what is best for your son, that any decision you make would be made with love and concern…and you can never go wrong that way. Do what feels right. If it needs to be changed or adjusted later, you can. You are not bound to it forever. Your care in making this decision shows what a great advocate you are for your son.
You will never be able to shape other people’s perspectives. They all have their own thought and background knowledge/experiences.
What you can shape is your son’s reactions and feelings about those perspectives.
He is a wonderful boy (but you know that already)…You can help him overcome any obstacle be it autism or giftedness…Either way, you are his mom and will find it in your heart to do what’s best…because that’s what us moms do.
This post breaks my heart because I see a little of SF in his social behaviors and I wonder sometimes myself. So I see what you feel here.
I send you my heart today to help you make the decisions you need to make.
As a mom of the 6-year-old whose teachers were wanting to have labeled as ADHD, I feel your angst. I have similar feelings…could it be he’s just bright and bored, and that’s why he’s so wiggly? Won’t he maybe just grow out of some of this? Will a label do more harm than help?
All you can do is keep advocating tirelessly for him. Sounds like you know that, and are doing it well.
This was such a painful post to read. It really seems that this concern of yours is kicking the hell out of you – and why wouldn’t? As you put it What I really want is what all moms want….for their child to be happy and accepted for who they are.
As I read it, a couple of questions came to mind: Oh, I was going to ask his age – but I’ve spotted that now (after my umpteenth read through…I just want to read it, and read it, and read it.)
Is he like this only at lunch break, or is he like this all the time – even at home (to a lesser degree)?
I hope you don’t mind me asking…
I’ve heard mother knows best, and it sounds like you do, despite all the conflict. I admire your mommy-ness your majesty.
There’s really nothing more for me to say, everyone else has said it…..but I want to say thanks for posting it.
When you ahve your childs best interest at heart any decision you reach is the right one. Just stay connected to the school and his teachers and make them understand that you are his biggest advocate! Good luck!!!
awwww (((HUGS)))
You didn’t ask for advice, at least not from a total stranger, but here it is all the same:
Let your worry alone for a little while. For a week, commit to not thinking about the down sides. Think only of the up side of your beautiful child.
Either this would simply just be a vacation for you, which you clearly deserve. Or it might end up becoming something more.
Either way, I really was moved by your words, your feelings. You are an inspiration, in the way you love your child so blindly. He’s an astonishingly lucky boy.
Oh, I totally forgot, this post has been nominated for Hot Stuff of The Week over at our blog, GNMParents
Good luck in the voting, and thanks again for the post, you deserve more than a nomination, you deserve a hug and a trip to Hawaii.
Consider this: You accept the diagnosis of autism so he gets some of the help he needs. Then when it’s time to work out a plan, you advocate for him not be stuck in a corner, but to be engaged and challenged. It will be a fine balance, but in time you will learn what’s best for him.
You do have control over the help he gets. You just have to remember to squeak loudly.
I have a son with a physical disability, so I know what it’s like to be the mom of the Odd Boy Out.
Please feel free to e-mail if you want to pick my brain. Good luck; I think you’ll do fine.
Heather,
Many others have already shared my own sentiments on how you are handling the situation, so I will share a resource that I haven’t seen listed, that I only came across a couple days ago.
http://www.livingjoyfully.ca/anneo/Highly_Sensitive_Shine.htm and if you get a chance, read her article I Am What I Am, as it chronicles her troubles in school.
I knew I came across this site for a reason, and now I know what that reason was.
(Here from GNMParents Hot Stuff)
Heather,
I am the mother to 2 autistic sons ages 11 and 13. Their autism was discovered early 2 yrs. and my other son 17 ms. old.
Their autism is very different from each other. We have had many programs, therapists and schools.
If you have any questions or just want to talk, please contact me at: mperryphone@aol.com
Hi, Canape sent me your way. I’m working my way through your sidebar list of autism posts. I’m going through a similar thing with my 4 1/2 yo, and this post really spoke to me. He spends part of his day in a co-op preschool, so I’m there once every couple weeks to see him struggle and be different, to see the other kids start to dismiss him as the off-kid. I accept him exactly as he is, but it’s really hard to see the struggle in your child. It’s really hard.
I’ve been re- reading your posts on Payton this morning, tough morning for us, and I need to rally in the troops in my mind. I come to queenie for that. Often wonder, why do schools need a label? I’ve been told it’s so they can provide the resources my son needs. But, what if I don’t want a label on his school folder, to go from teacher to teacher, school to school. What If I don’t want him put in a category nice and neat? What is wrong with teaching who he is? When I go see my son at lunch, I see him sitting by himself. The teachers are concerned about it. When I ask him about it, he replies, “Mom, I’ve been waiting all morning for quiet. Please let me be alone for awhile before I have to go back to the classroom.” Why isn’t this response OK with the school? We all have different levels of tolerance for noise, interaction, need for alone time. Let’s just let the kid be, alright, everyone? He’s a good kid. Not exactly in the middle, but let him be who he is.