I have been know to watch reruns of Degrassi. On purpose. I’m not proud. I could tell you it’s because I used to watch the original show way back in the day, but I really don’t know if that’s any justification. And now Chickadee is old enough to watch it (sometimes), though as a whole the show is considerably more sexed up than I remember it being when I was younger.
Really, I think Degrassi reminds me of all of the teen drama shows I loved in my youth (90210, for example) crossed with those after school specials I never could stop watching. There’s drama! And suspense! And kissing! And often a Very Special Message.
So one day I was watching Degrassi while I pedaled my elliptical, and Chickadee wandered in, and we watched as this one “quirky” student became progressively more agitated over a variety of things, culminating in a dramatic teen tantrum.
“This totally reminds me of Monkey,” Chickadee said, as the boy threw things on the floor and yelled.
It turned out to be one of those Very Special Episodes, the one in which Connor is diagnosed with Asperger’s Syndrome.
I’ve mentioned that Monkey is having a hard time this year. I’ve tried to resist dwelling on it, or obsessing over it through writing about it constantly. I’ve been mindful of the what-ifs and worried about my son’s privacy, and the sordid details of the last three extremely long months aren’t ones that need sharing.
But it’s been hard. Awful. My nine-year-old coming home from school and telling me he wished he was dead kind of awful. Really, really awful. I assume the school has us on speed dial, and as wonderful as his teachers are, I can only assume they feel a familiar dread every time I send them an email.
“He is like Monkey,” I told Chickadee. “Or, Monkey is like him. Monkey probably has Asperger’s, too. We’re looking into it.” Her eyes widened and she had a lot of questions. Did he know? What would that mean? Is it something we can fix?
I struggled with the answers: Monkey knows he’s unhappy and that he’s struggling, and he knows he’s going through some testing so that we can help him more. It would mean some things wouldn’t change but others would; it would mean maybe he could get some more help at school so that he won’t always feel like everything is so hard for him. It’s not something you fix, it’s something you manage.
She nodded. She was kinder to him, I think.
It’s not as though we didn’t know. We know Monkey talks like a wizened little professor, which frankly I have always found charming. We know he is rigid in his thinking and particularly intolerant of change. We know that thanks to his Sensory Integration Disorder issues he’s easily overloaded by too much stimulation, even when “too much stimulation” for him is absolutely no big deal for anyone else. And we know that he has issues socially.
But this year has been its own beast. Over the summer, Monkey’s pals grew and matured and the nuances of their social interactions became more refined, while Monkey… stayed the same. The stress of changing schools and being in a giant class proved more than he could deal with in reasonable ways, right at the same time that his peers have finally noticed: He is different. He doesn’t get it. And so he has struck out, shut down, flailed around, and been miserable.
He has refused to do work. He has done work and never turned it in. He’s taking zeros on assignments he could complete in five minutes if only he’d TRY. Or, that’s what we thought, anyway. That he wasn’t trying.
It turns out that he has been trying. He’s been trying so hard, and feeling like it doesn’t matter. Feeling like he doesn’t matter.
Things are better now, actually, than they were in the beginning. But they’re not okay. He’s not okay, yet. We’re getting there, though.
One night at dinner, Monkey said something particularly weird, even for him. I can’t even remember what it was, now. And Chickadee leaned over to me and said, “So is that… you know… is that sort of thing because he maybe has Asperger’s?”
Monkey’s whole face changed. He looked horrified. And although we’d talked about the various testing he was doing at school, although we’d explained to him that his brain seems to work a little differently and we’re trying to understand how to best help him, I’d not used the word Asperger’s with him, not yet. And I didn’t know what sort of explosion was coming, now.
“WHY,” he finally sputtered, “would I have burgers IN MY ASS??”
No, my children are not allowed to use the word ass.
Yes, we laughed until we cried. All of us.
That was the night I explained to him what Asperger’s is, that it’s a collection of characteristics that are neither bad nor wrong, but which may make things harder for individuals who have it. “Like me,” he said, as he listened, “that sounds a lot like what I do.” He looked down at his lap, morose. “I don’t mean to.”
I hugged him tight and assured him that he was a 100% perfect Monkey and we still didn’t even know if this was what’s going on, but that whether it is or it isn’t, our goal is to help him be HIM, happy and whole, and it would all be okay. School would be okay. He would be okay. We would find a way to make it okay.
So it’s not okay, not yet, but the testing is done and the school says yes, he appears to have Asperger’s. Nothing is different today than it was yesterday, except that now he qualifies for an IEP and that may mean we can get him some more help.
I know that labeling your child is a very charged issue. I’ve been cautioned against taking this route by more than one person. And at the end of the day, I don’t look at my kid and see a label… I see my child. My funny, quirky, charming, loving child. Do I want him to have a label that maybe some people will never see past? Not really. But I want him to get the help he needs more than I want to avoid some potential embarrassment down the road over something that shouldn’t be embarrassing.
Monkey can take the label. It’s only one little part of him. He has Asperger’s. He’s also the most handsomest, the very best Monkey I know, positively bionic, and my one and only little Yoda. And he’s going to be okay.
The only thing that matters is that he gets help. What he gets now will make a huge difference later in life. He’s quirky and fun and loveable…a perfect Monkey. He just needs some extra to help him be the best Monkey ever :)
I don’t really know what to say other than it sounds like you are one of the most loving mothers out there — not because you still love Monkey, obviously, but because of how supportive you are of your children, despite whatever life decides to throw at you. I also like how you face it as a family. I think a lot of people should learn that lesson. And not only Monkey will be okay. You will ALL be okay!
And on the bright side, at least he didn’t hear Ass Boogers instead!
It’s not a label for Monkey, it’s a label for all the bits and bobs that will go into helping him figure out how to relate to the world. I do get the reluctance to hang a sign on a kid that says, ‘this is who I am,’ but I don’t in the least think you’re doing that – nor do I think Asbergers will become the excuse for things. It’s an explanation and, oh GOD it’s good after blundering around in the dark to have an explanation. Bless him – bless all of you.
I hope with the heat of a thousand suns that this begins to get easier for Monkey. And you. ‘Cause I know a little bit, just a teensy bit, how you feel. And it’s hard.
More help is good. Hugs to you and your perfect Monkey!
Oh, Monkey. However, the ability to have an IEP can be a godsend. It’ll all work out.
Oh honey. I know, I know, I know. Let us grieve for the difficulties that our beautiful, quirky, super-intelligent children face. And let us be grateful that they live in an age when they have access to therapy and resources that will help them. And let us go now to buy them their own laptop computers and programmable Lego, because high tech is looking like a pretty desirable career path for our little Aspies.
He is going to be okay, and so are you. I’ve been exactly where you are, and let me tell you, having the IEP was a blessing for my littlest monkey. Who is now, at the age of 11, transitioning to middle school beautifully and actually doing the work. Plus I have all the help I need to make sure he stays on track.
It gets easier, and you are all going to be okay.
I’ve never understood the reasoning against getting a diagnosis. (I mean no disrespect to those who feel that way.) For us, it meant information, help, and a path. In this day and age of large classrooms where the teachers simply don’t have the capability of one-on-one teaching, an IEP gets our kids that extra help they need to succeed. We LOVE our ASD community and the teachers and aides are amazing. I wish all of the same for you and your Monkey.
And for Chickadee, being the big sister isn’t always easy (we’ve got one of those, too), but she is already such a wonderful support for Monkey and this will help her understand him that much more. Hugs to you on this journey.
Labeling doesn’t matter, so long as he is getting the help he needs! I’m so glad it’s at least an option these days.
As I told my sister, a label means not only the hope of more/new/better help for the child, but also for the parents! You’re not alone & while no one is exactly like Monkey, there are other parents out there with their own monkeys that are going through similar things & sometimes, just knowing that can help you take one more breath.
Don’t forget that he is always the same Monkey you have known and loved – only now you know a little more about him and can help him. Get that IEP written up and in place as soon as you can because the services the schools can provide will definately help. My Aspergers/ADHD kiddo has had an IEP in place since 2nd grade (now in 7th) and he attends all of the regular classes with the other kids. But he has also learned skills for coping with school (and life for that matter) and if he is ever overwhelmed during the school day he always has a room he can go to with staff that will help.
Although labels are hard they are a gateway to help.
I like this line: “our goal is to help him be HIM, happy and whole.”
You’re a good mom. You’re doing good (you know this, I’m sure, but I just thought I would say it again).
You are a one of kind Mom. Monkey is so lucky to have you as his. And it really is gonna be OK.
If the label gets him extra services, then the label is just what he needs. End of story. M has labels ( all medical ) but if that helps, it helps!
I agree with Headless Mom that more help is good. Hugs to Monkey.
Good luck to all of you. I hope it will help him!
Brand new reader. Not a mom, not anyone’s mom. No PMS (this week). And still, a tear fell from my face when I read “I don’t mean to”.
My sister is a rockstar in the Asperger’s (and also Autism) world. This is her: http://video.google.com/videoplay?docid=-3629736663934336710#
Hug your Monkey for me. Read everything you can, especially about alternative therapies. I just know that there is some very special things in store for all of you.
Life in perspective. Thinking of you. You (the entire clan) will make it. You have an amazing support group.
Normal is not only subjective, it is highly overrated. Being the best Monkey he can be is a more than worthwhile goal.
Here is another take on a life lived:
I think you all will be successful because of your family of love and laughter.
I work in IT, and have had the good fortune of working/befriending several individuals who have Asperger’s. They are AMAZING at their jobs, give fantastically useful feedback, and are the kind of friends who will always tell you if your ass does indeed look big in those jeans. :)
It’s fantastic that you’re getting Monkey resources and help to continue to be the absolute best Monkey he can be. He’s going to go far.
By the by, there are several good articles on being an adult with Asperger’s, and some various coping mechanisms, on Penelope Trunk’s blog (blog.penelopetrunk.com). Might be worth a gander.
Monkey is a brilliant kid with a brilliant mind. His focus and discipline will serve him well in the future. He will be a successful and accomplished adult BECAUSE of his lable, not despite it. Maybe he’s the lucky one and we’re the ones who should aspire to be more like him.
I have my own Monkey.. He was diagnosed when he was about Monkey’s age because he too got to the point where he was becoming more and more different from his friends… It was his choice to go and get testing to see if he could get some help for his sensory issues. As for his other quirks, we celebrate them. There is nothing wrong with this child. He is different, but it is in such a positive way. He has close friends who celebrate his differences and that is huge! Granted, we homeschool, so the labels don’t mean much around here. There is never a connotation of wrongness. From reading your blog I know you are a fantastic mom who will constantly reinforce that being an Aspie does not mean you are defective in any way, but rather you have talents and gifts that other kids don’t. My Aspie is 16 now and perfect in every way. While he couldn’t care less about things other 16 year olds hold dear… no drivers license, no girl friend, etc.. he is designing a video game and writing 2 different novels. And he is the funniest, sweetest kids I know. I am of the opinion that Asperger’s shouldn’t be called a syndrome but rather a gift. And the only time that Asperger’s becomes an issue is when we try to fit our star shaped kids into square holes. There is room for all sorts of differences, none of them being wrong. We don’t try to change our Aspies… we embrace the differences knowing that these differences might make them the next Einstein, Gates, Edison, or even DaVinci. Focus on their strengths. If they are visual, teach visually. Don’t expect them to blossom by trying to confirm them to the pack. I know that with you as his Mom, Monkey will know that he is in fact the best Monkey he can be.. no matter how different his brain processes things. My favorite story is how Edison’s mother contributed to his success. He said that his mother was the making of him, because she understood him and let him follow his bent. You are that kind of mom!
You’re such a good mom, Mir. And Monkey is so lucky to have you. A friend of mine is going through something similar with a school principal who has an agenda and just wants to get my friend’s son out of her school rather than deal with him because she claims she doesn’t have the staffing.
I wouldn’t be surprised if my guy (6) ends up being diagnosed with Asperger’s one day. At all.
Big virtual hugs to you.
I have what would be classified as mild aspergers. And we didn’t know anything about it when I was Monkey’s age. When it might have been a good time to know. Not knowing led to some interesting coping skills, that don’t really help all that much now.
Read anything you can get your hands on.
And I have it on relatively good authority that library sciences are a good venue for those of us with aspergers. Something about the rigid structure makes it easier to deal with. That might seem counter-intuitive, but there it is.
Love to you all during this transition time. My prayers are still with your sweet Monkey and all of the adults that see to his care.
Oh, Mir… you are such an awesome Mom. I don’t have anything to say, except that I wish I could just give you a big huge hug.
I am relating so much to this post today as we are dealing with a tough time with our daughter this year as well. Not Aspergers for us, it looks like an anxiety problem. Just so much of what you said clicked with me… the labeling, the calls from school (I think I have received them more days than not since the start of school), just the hurt you feel when regular life is so hard for the little person who is carrying your heart around with them.
I understand you being careful to protect Monkey in what you post (as you should be, of course) but I wanted to pass along that it helps to read some of the feelings I can’t really put words to in a situation that feels similar even though it is different.
We finally took my daughter in for a diagnosis (and medication) for Tourettes. We were SO READY for the label. For us, it made everything fit into a neat little box and we didn’t have to wonder and try to figure every thing out any more. We KNEW she had it for some time, and it got to the point where it was bothering her enough that she wanted medication.
I guess no one wants to LABEL their child, but there comes a point (at least for us) that the label was freeing.
My hope is that the label is something that can help Monkey feel better, and not just because of increased services. My hope is that knowing what the things that make him different (that he cannot help) ARE will increase his confidence in himself as an individual, and that the knowledge that other people share those traits will help too.
He already has the very best mama a kid could want and there’s a very good reason why he is YOUR Monkey.
This reminded me of last week’s Glee, when they were “labeling” the kids as minorities. “So Santana’s a Latina, Rachel is Jewish, or Finn” – “can’t tell his rights from his lefts.” It’s not a label, but it might just give him the help that he needs. Our school has a program for kids with Aspergers, and I have now watched several of them progress from elementary school through middle school. Instead of stressing their differences, they’re celebrated – if you’re good with music, science, whatever, you’re given the chance to do something with that, but still encouraged to step outside your box and try other things. There is also a “Friends Club”, where the kids go to learn social skills and how to read social cues, which is often a problem for Aspie kids.
And ass-burgers – I’ve never thought of it that way before, but I won’t be able to help it now!
I hope with the diagnosis, comes the help he needs. Good luck to all of you.
I would love to find the label for mine. Several thousand dollars later with issues we can’t hurdle. Two steps forward, three steps back. Maybe I will start by checking his ass for burgers:). I wouldn’t be surprised to eventually find ourselves on the autism spectrum somewhere. His diagnosis will be delayed with English as a second language(adopted at 6), and ADHD. We are technically still in the transition years. By the time we figure it out, he will be on his own. Or, I will be dead. Nice positive attitude, huh? I will be praying for your whole family:)
There are a # of parallels to my life as a kid that I can’t figure out how to phrase, so I’m just going to go with a big, supportive hug to you and the fam. You all sound like you’re in no danger of seeing Monkey as ‘an Asperger’s kid’, but that he’s always going to be ‘Monkey, who has Asperger’s.’ I’m so glad that there are way more advancements in thsi field these days than there were 20+ years ago, and I know that you’ll all get through it.
Oh, Mir. I hope this will take one big weight from your shoulders. Knowing is half the battle, right? You guys are all in my thoughts, especially Monkey man.
Try to remember, a label’s just a word. It doesn’t define Monkey. I hope it can help get him help he needs at school.
My 9 year old nephew was diagnosed with Asperger’s around age four. There are daily challenges, but everything has turned out alright. Mister Monkey will thrive now that you have a direction, I promise!
The “I don’t mean to” breaks my heart. But I have so much hope that this diagnosis means that things will get better for Monkey at school, that his teachers will have more tools at their disposal with which to help him. The path isn’t necessarily going to be easier, but at least now it’ll be more well-lit, in some respects.
Hugs to you!!!
(Standing up and applauding you!!) YOU ROCK!! You are doing the best for your child, you got him tested, now he can have an IEP and it can get better for him now in school.
I cried reading this and yet laughed so hard at his comment that I started crying again. You are a wonderful mom, your children are blessed to have you. Don’t ever forget that. Together you can do anything.
Knowing is always better than wondering, and still so much different than labeling. And he will always be Monkey, the one we’ve all fallen in love with. He is a lucky guy to have such a wonderful, loving, understanding, hilarious family.
Tell Monkey that Ass Burgers rock. I’m glad you are closing in on something that will help him. Once again I have to tell you that you are the best. mommy. ever.
I’ve had those same arguments with people on getting a diagnosis. And I was just interrupted writing this by the principal about the child I was just writing about. Anyway, I agree that the important thing is helping them and a diagnosis does that. It gives you a starting point and proven things to try. I don’t believe that it negatively affects them forever.
Demystification is a huge step towards Monkey feeling better about himself.
My husband grew up feeling like he was a freak, he was shunned and bullied because of his differences. At home he was told to “man up” that he was too sensitive, that he just needed to relax. If his parents had been as supportive as you, maybe he wouldn’t describe his childhood as a horrible nightmare.
By the time I met him, he’d developed mechanisms to cope, but he still felt like he was weird, different, and a failure. When I came across a book about Aspergers, I saw so much of him in it that I made him read it. He then went about researching it and took some informal tests to confirm our suspicions. Realizing that this wasn’t his fault, that there were proven techniques to help offset the quirks- he was more than relieved. It changed his life.
And like another commenter mentioned, Aspies bring to their chosen careers a level of focus and intensity that is very hard for a nerotypical coworker to match. My husband is an Anti trust lawyer (think anti monopoly) and is valued for his ability to analyze the details and remember things word for word.
Mir, you have given everyone here such a gift with your writing and willingness to share. I’m sad that there will always be challenges for Monkey, but ultimately I know he will be OK because he’s got you in his corner. Out here, also in his corner, are so many other people who will be helped and inspired by his (and your) example.
I’ll admit that I was wondering if that could be the case, just from what you’ve shared here. But it’s not the kind of thing I would ask of someone that I really don’t know, because I know that I’m a) not a real friend of yours, even if I read you every day, and b) not aware of the whole picture.
Autistic disorder with a side of sensory disintegration is our dx here, so I’ve done a lot of reading, have a lot of new friends who are in different places on the spectrum, so I wondered. I’m glad you know. Knowing is easier, in my experience. Even when you don’t quite like the answers.
But yes, he is and always be your Monkey. That hasn’t changed and never will. Just as my little guy will always be my Little Prince and that will never change, no matter what label we find to stick on him in our efforts to help him to be the best Little Prince that he can be.
Blessings and good luck as you find your way on this new pathway.
I am just grateful that he doesn’t have a side of asschips with his assburgers. I’d hate to think of him spending the rest of his life going “crunch!” whenever he sat down.
Srsly, tho, I think getting something “officially” diagnosed is a good thing. At least you know what you’re dealing with, which will go a long way toward fixing/treating it. Individual symptoms are tricker to figure out.
TrickIer. Not tricker. But you knew that, right? I’m just thinking about Halloween a lot lately. I blame candy corn.
sensory INTEGRATION, not sensory DISintegration… though sometimes it does feel like disintegration is a better word!
Aspie here. I got diagnosed at 22, and would have given anything to be diagnosed at his age. It’ll get better, and knowing why helps a ton with coping strategies.
I’m sure you’ve got this under control, but I’m always happy to share my experiences with it.
I’ve been lurking on this site for months now, and all the other witty and really hilarious comments have really stopped me from commenting, because there is no way I can be half as funny as some of the people who read your blog.
But this post really made me want to say something. Our oldest boy (my step-son) has also been diagnosed with Asperger’s, and you know what’s funny? When we told him, his first response was, “So, I have burgers in my ass now too?” I don’t know if it’s an Asperger or a boy thing, but it cracked us up.
Having a kid with Asperger is no different than having a kid who talks like a professor, memorizes the entire encyclopedia, struggles with social cues, and can be very very lonely and sad. But it helps to know. It really does.
It’s not easy, and it hasn’t been easy for us, but we do really see improvements, in him and in us. We’ve learned to laugh a lot more (hint, Asperger kids are literal to a fault. Don’t ask them “are you decent?” when you mean “do you have clothes on” because they will say assume you’re asking if they are a good kid, say “yes”, and you will walk in on a naked boy). Most importantly, we’ve learned that everyone has their issues, there is no such as normal, and Asperger kids have awesome memorization skills, which means we never have a problem remembering birthdays anymore!
Mir, thank you so much for sharing this with us. I have never heard of Asperger before. So, like many, I Googled it. I pray that now there is a diagnois, Monkey will soon have treatment and learn to manage it. Bless his heart for knowing he doesn’t mean to sometimes…Bless your heart for not giving up on him.
As the mom of a 5 year old SID kid who is currently being tested to see what else is going on, I related to everything you said. I never wanted my kid to be labeled (I still don’t) but once he started having so much trouble I was desperate to know something and couldn’t wait for a label. Now that he is being tested, I feel oddly calm. I know he learns differently, I know his social skills aren’t up to par and that we might have a long road ahead of us. But at least I know something, yanno? The constant wondering and soul searching about what *I* had done wrong was making me nuts. Now that I know that I was blessed with a kid who is a little bit different from the norm, it makes me want to step up my mothering game a bit more. Yeah, there are some days when I want to pull out my hair or cry that I didn’t sign up for all of this but for some reason I was given this opportunity. In a way I feel honored to be my son’s mom. And I also feel honored that you are sharing your journey with us because it makes it so much easier for those of us who are walking the same path.
I’m really glad that he will get extra help. I worried about the label when my son Andy was tested to be LD, but the extra help enabled him to progress with his learning and to cope with his differences. It wasn’t always easy for him or for me, but it worked for him. Now he has a PHD, is an assistant professor, is married with two children and has a wonderful circle of friends and family. I’m thinking that Monkey will also be a success story. And, he will be the most handsomest when his braces come off. See you soon.
I’m so glad that things are going to be better for Monkey. He sounds like such and kind, loving and intelligent kid.
And I’m glad I’m not the only adult out there who watches Degrassi! I watched it as a kid and yes, it is much more sex charged than it used to be. It’s not as bad as Secret Life of the American Teenager though. I was curious and kept track. In the season finale, the word sex was used 71 times and that wasn’t even me keeping track of all the ‘other’ ways to say sex.
We gave in and took the ADHD label last year (even though I hated to do it)and it actually helped. At least now his school is legally required to help even when they are out of patience with helping just because it’s the right thing to do. It’s also helped us get him in classes with fewer students and better trained teachers. Hugs to you and Monkey and even to Chickie who sounds like she’s handling all this with special big-sister kid gloves.
I know you don’t know me… but I feel like I know you because I read your blog daily and have for years…
My son is 11 and was diagnosed with AS at the age of 7. We homeschool, for various reasons, but this decision has changed my son’s life. He is able to get the OT he needs and he is getting the best education. I know this is all new for you… so if you have any questions that I may be able to answer, please email me.
After getting the Dx of AS we qualified for SSI for my son. It helps pay for some of his special services… just another FYI.
You are NOT alone. There are many many many Yahoo groups for parents with Aspie children. “Aspie” (in case you don’t already know) is what people with Asperger’s Syndrome are often called.
And educational diagnosis is different from a medical diagnosis, and there are pluses and minuses to each.
Frankly, I’m all for an educational diagnosis (one given by the school district and used only for school district purposes) because it (as many other ppl before me noted) opens doors and gives the kid practical help.
Only you and your family can decide if getting a medical diagnosis is the correct path for you, as that has larger ramifications (think insurance documents, pre-existing conditions, etc).
A friend sent me a link to this site as she is a follower! Wow-what a God wink to see this after leaving the neurologists office only a few short hours ago where I was told my 13 year old is QUIRKY! I’ve been saying it for years! Of course the “official” diagnosis is mild AS, but now I feel like my husband and I have an explanation for all his eccentricities and know best how to handle everything! We have been to other doctors and neurologists with little success. We have had other family members sit in judgement of our parenting skills because our child is different. Our child is bright and funny and sweet and caring. I hugged him after our appointment and told him-nothing is wrong with you-just continue to be the best you that you can be! God bless you and thank you for sharing!
Tell Monkey that I love him.
I’ve been reading both Want Not and Woulda Shoulda for a couple of years now and have never left a comment (other than pick me! pick me!), but wanted to come out of the wood work on this one. As a professional that worked within the IEP system and focused on students on the ASD spectrum, I applaud you. It’s so scary to get that label, but you’re right – it’s only a small part of him and more help always equals more help. Just like more love can never be bad, neither can help be.
Thinking about labels:
Just as I HAVE a bipolar disorder, I’m not “bipolar”…
Monkey HAS Asperger’s, he is not “Asperger’s”
May not help with some of the kids (kids can be very cruel), but it’s a very calming, helpful mindset for me and it might help him, too.
You are yourself. You just happen to also have this condition.
Oh, and I think “Officially Quirky” would make a GREAT t-shirt!
You are such a beautiful writer. This brought tears to my eyes. I have six adopted children and 5 out of the six have some mild to serious issues. One of our more mild children was diagnosed last year on the Autism spectrum. This year they are doing more intensive testing to rule out Aspergers (I love how they say rule out when it’s exactly what they are looking for). I wanted to thank you for giving me some calm. Your post made me stop and remember that my little Boo Boo is still the best Boo Boo to me. I appreciate your words more than you know!
Mir, it seems from your posts that you are such a good mom. I come from a family that is a bit older than yours (there are six of us ranging in age from 18-29), and in hindsight it has meant the world to have a mom who accepts all of her kids for who they are. AND it means a strong, loving adult family in the future. Something to look forward to!
My oldest child also has Asperger’s, and I think you have made an incredible step by talking about it and naming it. I know I felt relieved and more “able to deal” once I had done so, and I wish the same for you.
Welcome to the wonderful “in” world of autism jokes–if you are on the inside, you are allowed. “Ass Burgers”–I love it. Sometimes you laugh so that you don’t cry.
I don’t mean to dismiss the pain that Monkey and your family have gone through, and I know that things are just harder for “Aspie” or quirky kids, but things will be OK. We finally relented and put my daughter in an special autism homeroom “class,” which has helped immensely with social skills, time management, and general coping. My daughter started high school this fall, and she is making A’s and B’s in Honors classes at one of our state’s top high schools.
Just realize that you are probably going to have to really push for Monkey to receive what he needs, and that is the value in the “label” that folks worry about. It’s about understanding his strong learning style and helping him get what he needs.
God Bless, and Good luck!
As a former special ed teacher who finds herself irresistibly drawn to children with autism and aspergers, I can’t say I’m too surprised. I think its part of what I recognized in your descriptions of him and found endearing. No, labels aren’t exciting, but they don’t have to be limiting either. The more you embrace the word, the less stigmatizing it will be. There is a sense of relief that comes with a diagnosis of any type – the quirks you notice ARE there and they ARE unusual and there are plenty of things that will help. Having a label can simply be a means of understanding.
All I have ever really wanted as a parent is to raise my children to be exactly who they are and to teach them that they are perfect exactly the way they were made. You do that. Daily.
Aw, Mir…you know what struck me, when you said that nothing is different today than yesterday. My son was recently diagnosed with muscular dystrophy, and that’s something I have to tell myself ALL THE TIME. He’s the same kid, but now we have a *diagnosis* and it’s so easy to forget that he’s the same kid and get bogged down in what it all MEANS, you know? But you just have to deal with what it means TODAY and worry about tomorrow or five years from now tomorrow or five years from now. Hang in there.
My 10 year old son has Asperger’s. He’s quirky and brilliant and sweet and I wouldn’t change a thing about him… I just wish everyone could see him the way I do. Adults think he’s amazing, but kids think he’s weird. We’re homeschooling this year because the public schools couldn’t (or wouldn’t) accommodate in a way I felt was appropriate, and I couldn’t put him through another year of being bullied, picked on, and harassed.
Good luck in your journey.
The “I don’t mean to” killed me. Give Monkey an extra-special hug from me, ok?
Mir, I am so touched by your honesty, transparency and ability to find laughter in the challenges of life. I both laughed and cried reading this post. I’m sure you would not have picked this for dear Monkey (or any other child) but God did pick you and your Monkey for this. While it is easy to rail at the injustice of it all, I am overwhelmed with the wonder and blessings in how folks who struggle with Asperger’s or ADHD or whatever else can come and feel part of this community you have created. I see in this the truth that God does, indeed, use all things for his glory.
I’m so sorry Monkey has had such a hard year. But I am also so glad that you are all getting some help and that he remains such a brave boy.
Ok, I am still snorting over the “ass burgers”, I need to tell my daughter in law who is a special ed teacher, she will love that one!! But seriously, having had children in our family with tourette’s who have sensory integration issues, and a grandson who had autism, I understand the stress and strain of trying to figure out all the puzzle pieces. Monkey is lucky to have a wonderful family to get him thru all this.
You are very brave Mir. You are also a great mother. Being open with your children like that is wonderful and he is lucky to have you to see him through this.
I laughed and laughed, too. Monkey is priceless beyond description. Please tell him people who don’t even know him, love him, but in a non-threatening, supportive kind of way. Not a creepy stalker kind of way.
Love and Hugs.
This sounds like a huge step forward to everyone being happier. He’ll get the help and tools that he needs to succeed. Good luck with the process, I know it’s not an easy road ahead.
Mir, I’ve got two officially quirky kids – and four others that might as well be. Love to all of you.
Ooph. But on the other hand–yay! Knowledge is power, and knowing what you’re working with makes it that much easier to tackle.
I have been reading for a while, but I don’t often comment because I’m am simply not as good of writer as most of your other commenters. I want to thank you for sharing Monkey’s story. Having read about his life with SID made it much easier to understand and accept when I was told my 2 year old son has SID. It wasn’t as scary of a concept as it would have been before I started reading your blog. I would say that there is an excellent chance that he will continue to follow in Monkey’s path. We live in California, so with the SID label came an amazing amount of help through the Early Intervention Program. I hope that you guys will also receive great services. Thanks again for sharing his story.
Monkey you really are amazing! Thanks for being ok with your mom sharing parts of your journey with us. We’re praying for you and cheering for you as you learn to cope with life. You are a rockstar in my book! Plus the burgers in the ass comment made my week!
First, hugs to you guys. This is hard, hard stuff and you are handling things well, and gracefully and with strength and determination.
The labeling thing…from a teacher’s perspective…sometimes it’s a *good* thing for us, it gives us a parameter or a basic guideline. It has been most helpful to me when I have parents and kids who are upfront about issues. A lot of the “refuse to label” issues end up with a confused, frustrated teacher and student, as we teachers struggle to figure out how a child learns best by trial and error.
If I have a kid in class with ADHD and I *know* it, I can adjust my teaching in ways that have worked with other ADHD kids and then refine some more to meet the needs of the individual child. Same with cerebral palsy, PDD-NOS, sensory issues, etc. The label, for good teachers, is a starting point, not a stopping point.
My personal philosophy is: everyone has something, some issue or challenge. It’s just not always immediately apparent; we need to treat each other with kindness and forbearance, as much as humanly possible.
i’m so glad he has you. i think you are right to name it. say it outloud. own it. no secrets, no shame. then you go forward and move through, up, over, in, and around- life. bless and keep you.
Love that boy.
And his mom.
And that inquisitive girl-child too.
Labels have this tendency to put people into boxes as if all the ones with the same label were to be considered in the exact same way. Which is why we hate them. On the other hand, the fact that there is a name for something means more hope: other people have been through similar ordeals, Monkey is not alone. Hugs to all of you, but him more particularly.
As I sit here and read all the words of encouragement, the love, and admiration for both you and Monkey, I want to say how fortunate he is to have someone asking the right questions. Not everyone is as lucky as Monkey to have someone fight for him and then have someone hear the cry.
Keep going Monkey! You can do this! You have an excellent team behind you!
This has me in floods of tears. Only because we went through similar issues with my son who has Dyspraxia and a mild learning difficulty. He is different and finds normal things hard. We always told him that this was only a tiny bit of him and he has now learned to live with it, kinda. He works so hard at school and never gets the results he deserves. He tries really hard to brush his teeth properly but I end up having to help him. He tries really hard in social situations but I see other not getting him. It is a constant worry but his personality totally makes up for his shortcomings. He is the most loving kid and is extremely kind to younger kids. He adores his Mammy and Daddy. He has a huge support system here at home and at school. I really would’t change him for the world, just change the world a little bit so it understands him better.
My boy is now 14 and life has got better since he got labeled at 8. I really hope your little boy, Monkey, gets the help he needs and learns the tools to help himself. My thoughts and prayers go out to you all but especially to Monkey. Best wishes.
Tis has me in floods of tears. Only because we went through similar issues with my son who has Dyspraxia and a mild learning difficulty. He is different and finds normal things hard. We always told him that this was only a tiny bit of him and he has now learned to live with it, kinda. He works so hard at school and never gets the results he deserves. He tries really hard to brush his teeth properly but I end up having to help him. He tries really hard in social situations but I see other not getting him. It is a constant worry but his personality totally makes up for his shortcomings. He is the most loving kid and is extremely kind to younger kids. He adores his Mammy and Daddy. He has a huge support system here at home and at school. I really would’t change him for the world, just change the world a little bit so it understands him better.
My boy is now 14 and life has got better since he got labeled at 8. I really hope your little boy, Monkey, gets the help he needs and learns the tools to help himself. My thoughts and prayers go out to you all but especially to Monkey. Best wishes.h
Dammit you made me cry. Again!
It is what it is with or without a “label”. My grandsons school refused to “label” him austic. They said they thought “developmemtly delayed” was better I found this nuts.Later I found out they “mislabel” children so they can have less IEPs.Under the Equal Education Act they must provide any service you or your doctor request.I’m sure some schools are better than others this was our experience.
I love the “ass burgers” comment – so innocent and cute! I’m not sure if you’ve ever watched “Boston Legal” but there’s a character on the show (an attorney) who has Aspergers. He is lovable and quirky and very open about it – and he is very successful. All in all it isn’t the most kid-friendly show, but if Monkey could watch some of the episodes about “Jerry,” it might help to “see.” Maybe? They have it on Netflix. Just something else to look into. :)
I have 4 kids, one officially quirky and one never diagnosed with anything but he’s very quirky. My two
quirky kids have done the best in school, have the most amazing empathy for other people and just generally are great kids. Not that the other two are not, they are all great kids. I have high expectations for all of my kids.
Your Monkey may face some rough times ahead, but with you as his mother he will be just fine, more than fine even.
I went through something similar with my daughter. It wasn’t asbergers, but dyslexia. I’ve known in that deep down mother way ever since she was in first grade and made a card for the neighbor boy with stencils. The words were spelled correctly but every single letter on the page was written backwards. And it didn’t bother her one bit. I thought, okay, she’s wither a genius or…. she has dyslexia. As school went on it became very apparent in more ways than one. I continually asked for the school to test her, but they always declined saying she was doing well in school. But in 3rd grade she was spending three hours on homework each night. Because it was too hard for her. Dyslexia is also associated with other personality quirks that she has – time mismanagement and poor handwriting. I finally had her privately tested mid 5th grade. She knew that she was being tested, of course. But I never used that term with her, because I didn’t want to give her a label or a complex. I assure her over and over that she is bright, and smart, and that it’s simply the way her brain works, that it doesn’t mean that she can’t do well in school and in life, but that she is sometimes working much, much harder than her peers to keep up and that’s what the accommodations are for. The first time she heard the phrase dyslexia used she freaked out. She’s still not fond of the label, so I avoid that term. I am proud to announce that 1/4 of the way into 7th grade the she finished the first semester with B’s and A’s. The only accomodations she is really utilizing is that the teachers are not allowed to count off for spelling, unless it is a spelling test. So if she were to spell the word Asia A-i-s-a and it is the correct answer, it counts. It was so frustrating that she was missing these prior to the testing because she literally had all of the right answers and was getting low C’s and D’s. I have been amazed at how little the teachers know about dyslexia and the broad ranges it exists. Because she was high functioning – because she is above all else a pleaser – they were unable to see her struggles. I have yet to sit through one parent-teacher conference without bursting into tears. Even with the private diagnosis, they fail to grasp the reality. I’ve taught her that she can and will learn and get good grades. That she may have to work harder for them, but it’s no excuse not to go after them. I fear the teachers see me as a parent trying to let her off easy and someone who is not satisfied with average grades, so I have made this all up in my own head. It’s tough. But as parents, we have to be an advocate for our children, and teach them how to advocate for themselves. Hugs to you, you are doing all the right things.
Out of the woodwork here to say that back in the ’80s, I knew a boy with Tourette’s. It was “labeled,” dealt with. He’s in his late 20s now and has a good life — all the things you’d want for a son. A label is not a sentence. There’s hope.
My son has Asperger’s and SID too. And all I can tell you is that the label doesn’t matter – what you do with the label does. My son is wonderful and I wouldn’t change him for the world, although I’d change the difficulties he has in a heartbeat. If anyone can preserve the idea that Monkey is a great and wonderful and fabulous little boy within the confines of a particular label, it’s you. Hugs all around to you all. You guys will be just fine. I promise.
My daughter doesn’t have Aspergers but a huge learning disability and lots of shyness/unsureness because of it that just keeps getting worse making her more and more different from her friends…the few she still has. Yesterday we finally got the school to meet to start an IEP for her and just knowing that someone else is FINALLY going to help her takes a huge weight off my shoulders. It isn’t exactly what I would choose for her, but I think she is pretty amazing so who cares what the “label” is. Just knowing there is help and that she can be less frustrated makes me feel better. She seems happier to know it isn’t all her “fault” and it has actually made her more secure now that she knows what is going on with her.
You are an awesome mom. I think it is awesome that you are making sure he is not feeling “less than” for something that can certainly make a person feel that way. I think he (and my daughter) are pretty awesome (let’s see how many times I can use the word awesome in this paragraph) kids, and I think some of their “disability” might actually help them in the future when they are adults, but right now struggling through it all is very difficult. Anything different is hard as a kid, and I think both our kids are lucky that they have moms that understand just how amazing they are no matter what they think of themselves and encourage them to be themselves and keep trying.
I’m torn between crying because I want things to be okay for Monkey, and even though I don’t know you outside of the internet, it breaks my heart to think of Monkey being so distressed; and laughing because… Ass Burgers! I guess the thing that combines those two emotions is this: I’m thinking about you guys and praying that having an IEP will help Monkey and make school and everything so much better for him.
Read the book by John Elder Robison,
Look Me in the Eye: My Life with Asperger’s. He also writes a blog at-http://www.psychologytoday.com/blog/my-life-aspergers.
I don’t know how typical he is for an Aspie but it is his viewpoint of his life. I read some other book(can’t remember the name) that talked about how people with Asperger’s who go into science are the ones who will make breakthrough discoveries because they are so obsessive about their interests. It is just so hard to get through the lower grades until college.
Mir, Otto, Chickadee, and most ESPECIALLY Monkey,
This is a hard time, and a confusing time, and a scary “edge-of-an-unknown-cliff” time. Coming from someone who has more Asperger’s in her family than anyone should, that “label” isn’t anything negative. We have Doctorate degrees, we’ve been high ranking military officers, and we’ve gotten into top colleges. Just really quickly, I’d like to say something to Monkey, and Chickadee.
Monkey, you can do this. With your wit and intelligence, you will succeed and go further than many of your “un-labeled” peers. My mom (who has dyslexia, and ADHD and also happened to be a department chair at a university) had a magnet on her filing cabinet that read, “Normal People Worry Me”. Well said. What is “normal” anyway. Don’t let the Aspberger’s label worry you or hang over you. Embrace it, and use it to educate people. You’ve got this, buddy! You’re smart, and funny, and bound to succeed.
Chickadee, you’ve got a tough role here as big sister. We all know how much you love Monkey. It’s hard being the big sister to someone who is struggling with this. It’s worth it though, take it from someone who knows. When you’re boring grown-ups, you’ll be able to be the best of friends and support each other through the tough times. It’s all worth it.
Hugs all around. Mir, you know we love and support you. I hope you read all these comments and realized that you have a heckuvalotta people sending you good vibes and prayers. Otto too, he’s a saint. :-)
I hope this come out correctly, but I am so glad when I hear about kids who have these types of issues to deal with that have families so well equipped to help them.
I can only imagine how much harder it must be for kids like Monkey who don’t have that and how sure I am that he will be just fine because he has all of you.
You? Are amazing. And so is Monkey.
I usually only lurk, but teared up today as I snuggled my baby close and sent big hugs to you and yours. You are incredible family and I am so proud of you all. Thank you for sharing with us!
This touched me profoundly. Thank you.
Just wanted to send you all my love, encouragement and respect for what you are dealing with. When I was pregnant with my son, during the ultrasound when we found out the sex, we were also told (thankfully, a wrong diagnosis) that he would likely be born profoundly disabled. I was simply shell-shocked, and called a friend. In her infinite wisdom, she said, “Dawn, THIS is the baby that God meant you to have. Congratulations on your son.”
Congratulations on your Monkey- quirks and all.
Mir from one mom of a special kid to another, a label is simply a name for everything you already knew about your wonderful, incredible, amazing son, now it’s just easier to explain it to the rest of the world in 500 words or less.
My son has early onset childhood bipolar. The vast majority of the time he can play it off well enough to be on the wiggly end of the socially acceptable spectrum, and the only people who need to know that are family, close friends, and his teachers/caregivers. Other times, like last weeks soccer game, everyone within earshot knows SOMETHING is very different about my child, and on those occasions there is a huge HUGE relief in being able to explain quickly and succinctly that no your child is not a total bratty jerk and has not lost his everloving mind, in fact, he has a medical condition called and you appreciate their understanding. Faces that were full of disgust and judgment a minute ago make an immediate 180 and suddenly everyone has your back and can be part of the solution instead of part of the problem.
Monkey and my son Tristan will be who they are no matter what you call it, but calling it something is often the light at the end of the tunnel.
Best of luck to you and yours…
Here is a list of famous people with burgers coming out of their asses (Monkey is in very good company):
The biggest, warmest, most comforting hugs to Monkey. It is so hard being different.
My younger daughter has Central Auditory Processing Deficit, which isnt even a patch on Asberger’s and life (especially the school years) has been tough for her. (And for me, but I’m the Momma, so cannot admit this.)
You can tell Monkey that the entire Interwebs love him to pieces, regardless of how he processes life.
Also: Not the Dawn from two comments above. Although my heart goes out to her as well.
This having “different” children is a difficult ride, isn’t it? Luckily, we’re tough enough to handle it.
Hopefully, the diagnosis will help with coping skills. Sometimes it helps just to be able to point to something and say “I am not crazy, this really is more difficult for me than it is for other people!” Monkey is such a great kid, I am sure he will be able to overcome this, especially with the support of his awesome family.
I love the stories about Chickadee being so nice to him. My 12 year old daughter is getting better about being kind to her little brother, too, and it is so sweet. They still fight, but it makes my heart almost burst to see her trying to help him, or do something to make him happy. I love the stories about Chickadee being nice to Monkey, too. Sibling love is awesome.
My son has many of the same issues and I’m afraid labels are sometimes needed before you can access the assistance you need. Fingers crossed for Monkey.
OK, I’m wayyyy behind on this, but I think you’re an awesome mom. I have a five-year-old son who is a Monkey. I struggle with the label thing too. Hugs to you both!
You are the most amazing mom, and I know you will guide Monkey through this so he can be a happy Monkey. I’m a little behind in reading right now – but know I’m thinking about all of you!
I just caught up with this today and can only say God bless you and your Monkey. I know that your loving family will only find this label a blessing–a way to help Monkey navigate the years ahead–nothing more, nothing less. From all you’ve shared, I can see he’s a wonderful kid who just needs a little help right now. Good for you for finding it for him. And to Chickadee, you’re a great sister!
Best of luck with the IEP.
Stay strong and be well…
Aw, sweet Monkey! I’m sending you all love, and maybe some fries to go with those burgers ;)