Wednesday, September 15, 2010

Looking At The World Differently

“What’s wrong with me?” Tommy asked from the backseat of the car.

I chewed my lower lip. We had just finished up Tommy’s IEP meeting at his school and it’s never easy to hear that your kid has trouble learning. That he will most likely struggle his entire life.

“Nothing is wrong with you,” I assured my eight-year-old son who I noticed had issues from a young age. For one, he wasn’t talking like all the other two-year-olds. Then I’d notice that he’d do this thing where he walked back and forth over and over again, watching something from the corner of his eye (I would later discover that this was known as stemming.) Loud noises would freak him out and I’d get constant phone calls from his preschool teacher (“Tommy melted down when we had a fire alarm drill. I couldn’t calm him down for an hour.”) When other children would cry, Tommy would run over and squeeze them, as if trying to stop them from making a loud noise.

Now that he’s in third grade, he’s improved on a lot of those things. He doesn’t really stem and he’s developed coping mechanisms to deal with sudden noises. But still. There are a lot of things that he still has issues with.

“You remember what you have,” I prodded Tommy.

He sighed. “Aspergers which is a form of Autism. And I hate it.”

I stuck the keys in the ignition. “What do you hate about it?”

From the rearview mirror I watched Tommy pick at his nail. “I don’t want to be different.”

He’s at the age where he’s noticing that people are different from he is. He asks why everyone doesn’t go to the Resource Room. He wonders why he gets pulled from class to go over Social Situations. He doesn’t comprehend why he can’t play sports as easily as the other boys in PE. (That part could be because his mother is a klutz.)

I turned around in my seat and faced Tommy. He didn’t meet my eye. He struggles with eye contact which is one reason why he does Social Situations with the school counselor.

“You do know it’s okay to be different, right? If you were like everyone else, the world would be a boring place, don’t you think?” I said. I squeezed his knee and he allowed this. I’m grateful for the fact that he allows me to touch him. Some Autistic children shy away from touch.

“I know,” Tommy grumbled. He’s heard the speech many times before. “But it’s just not….fun.” He blinked his eyes rapidly and took deep breaths. He does this in order to prevent himself from crying. Tommy has always been sensitive and he’s beginning to learn that eight-year-old boys don’t get mercy from other children when they shed tears.

“You see the world differently from everyone else. And some day, Tommy, you’ll see the good in that,” I promised.

Tommy finally met my eye. “I guess so.”

I started the car as a bunch of thoughts danced around in my head. Would kids accept him? What would he be like as an adult? Would he ever get married? What if….and oh God, this is the selfish thought that somehow finds its way in my mind and I hate myself for even thinking it….what if he has to live with me forever? Would my own marriage be able to survive that? Divorce rates are high when an Autistic kid is in the mix.

As I drove home, the envelope containing all of Tommy’s IEP paperwork was in the corner of my eye. When I got pregnant, I had no idea that the baby I carried inside of me would need so much paperwork. It’s almost a foreign concept for me to have my other kid start school without any paperwork. The other day I almost asked when her IEP meeting would be.

When we got home and headed for the house, Tommy said, “Mom? Maybe looking at the world differently isn’t so bad.”

I swallowed and felt a lump in my throat. “It’s really not, Tommy. I’m glad you get that.”

“Can we have ice cream for dessert?” Tommy continued and for a second he was just like any typical third grader.

I smiled. “Of course we can have ice cream for dessert.”

81 comments:

  1. It sounds to me like you are doing a fantastic job - it can't be easy for you, or him.

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  2. The second to last thing he said is so deep for a third grader! Good for him. Good for you as a mom. It has to be so difficult for you. I think you're doing great. (smiley face inserted here)

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  3. Sounds like you are doing a fantastic job with Tommy! I'm sure it is much more work than with your "normal" third grader but like you said - if everyone was "normal" what a dull place this would be!

    Oh and YEAH for ice cream for dessert!

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  4. This made me cry. My heart just aches for Tommy - not because he's different, but because the rest of the world often has trouble accepting it. Since Colin has started school I'm now keenly aware of that protective "mama bear" feeling ... the one that makes you want to stalk your kid from a distance and maul anyone who makes him sad, even for a second. You're doing such a good job of handling everything with Tommy, and of making him feel okay about it.

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  5. He's lucky to have someone so involved and resilient.

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  6. Tommy is truly blessed to have you as a mother.

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  7. You should be proud that you are teaching him to be strong and own his uniqueness. It's so hard to watch them struggle, but you are going a great job with him it seems.

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  8. It sounds to me like you're doing the best job you can...and that's pretty darn great! I sympathize with you. Princess was diagnosed with ADHD in kindergarten and school was a major struggle right up to the last seconds before graduation.

    I always thought something else was going on. At one meeting back when she was in elementary school they told me she "processed things to memory differently" than the other kids. To me, if you can't do what the other 24 kids in the class are doing it should be treated as a disability and help should be provided, but since there was no recognized disability to label she slipped through the cracks in the system. She graduated only because she was in "special" classes and only then because they cut her slack all over the place and let her do work that she never did, etc.

    I'll admit, if it helps you, that I've spent a lot of time wondering what kind of future she will have and how it will impact my life, as well.

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  9. ahhh, Tommy was put in the exact right family. This post, among so many others, is proof of that.

    What a gift you are to each other!

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  10. You are such an awesome, involved mom! Tommy is lucky to have you for a mom.

    And I totally understand the possibility of passing the klutz gene on. Roxy's already showing potential for having it :)

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  11. This was lovely and absolutely perfect.

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  12. i think you are an AWESOME mom and tommy is beyond lucky to have you...

    though my situation is different cause mine was more physical... but i was born with a pretty severe cleft pallet.. i knew i was different, i looked different (for quite a while anyhow).. and i would have to be pulled out of school for weeks at a time for reconstruction operations.... but the one thing my parents did for me that i think helped BIG TIME.. they DID NOT treat me so different as my brother and sister.. i still had chores, i still had rules.. and such as that....

    i think both your kids are way lucky to have you.. my thoughts will be with tommy as he deals with this..

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  13. He is such a sweet boy. Hug him for me. :)

    Great post.

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  14. Ice cream makes the world a happy place. Your son is a lucky boy to have such a great mom.

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  15. I may or may not be crying right now.

    Can Tommy come over and play at our house some day? I want to squeeze him.

    McKenna and Natalie can destroy Mack's room while not sharing and Tommy and I can talk about stuff. And laugh.

    You can come over too. I mean, if you want to. Or I can just watch the kids.

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  16. Oh that made me get teary eyed! you are such a great mom!! he is lucky to have you!

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  17. You got me all teary-eyed. It sounds like you are doing an amazing job with him. Amen to the ice cream.

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  18. What an absolutely beautiful and perfectly written post.

    Tommy truly is very lucky that you not only noticed something off, but sought out help for him. He's blessed that you are so involved, and so loving. He's blessed that he has YOU as a parent.

    I have friends whose child is CLEARLY autistic in some way (most like aspergers) and they REFUSE to get him tested or acknowledge it. It's heartbreaking. While another friend noticed something "off" in her son at 16 months and jumped on it immediately. He has Sensory Processing Disorder which is like 1 on the autism scale. BUT, he got the therapy and attention he needed and he's AMAZINGLY improved and has such a different looking future, all because she was willing to acknowledge his "difference" and get him the help he needed.

    And....off my soapbox.

    I just wanted to say...you're awesome.

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  19. You are such a supportive wonderful mother.

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  20. Are there other kids with Aspergers he could hang out with? Then maybe he wouldnt feel so different?

    The way you write about him, he doesnt seem all that different to me. Im sad that he is feeling different though. Makes me wanna wrap him in bubble wrap and keep him safe from any mean kids that might hurt his feelings! But Im guessing he probably wouldnt like to be wrapped in bubble wrap.. lol

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  21. Great post! I struggle with telling my daughter about her Asperger's. For now, we're not going to. But she is sensing that she is different from other kids. Right now, she doesn't seem to care. She likes being different. I hope that attitude doesn't go away.

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  22. I think... you are a great mom :)

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  23. Thank you guys for all your wonderful comments.

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  24. It's not easy being different from everyone else but you're doing a great job.

    As I'm sure you know, having Asbergers just makes things a little (or a lot) tougher but not always impossible. Just ask my CEO, he has it too!

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  25. YOU ARE INCREDIBLE! AND STRONG! AND SMARTY! AND AN AMAZZZZINGGG MOM!

    I worked in a group home with a guy who had severe aspergers. (among several other mental illnesses) It was tough, but what was tougher was that NONE of his family was involved! We were his family, and you could tell there was no communication while he was growing up!

    Your son is going to succeed because of your family! Keep pushing him! Keep explaining things to him! Keep loving him!

    You are doing an incredible job!!!!

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  26. This made me cry. I can relate in the aspect of a child realizing they are different and being sad about it (even though are situations are not at all the same). My eldest has severe peanut allergy and he has asked why he has it, and how he wished he didn't, and that it makes him sad when all the other kids get something that he can't have. He knows the severity of his allergy, he knows it can make him super-sick (we don't tell him he could die from it). We concentrate on what he CAN have (which is a lot). It sounds like you have a very bright and sensitive child and you handled that convo perfectly.

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  27. I am so touched. What a great piece.

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  28. Thanks for making me tear up. Sheesh

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  29. Bless his sweet heart. You sound like a wonderful mother - the perfect mother for Tommy.

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  30. I know it's not the same at all, but my boyfriend has ADHD and one of the things I love him the most for is the way he thinks. He thinks differently from anyone else I've ever known, and it's the most amazing thing. I can't tell you how much of a difference it makes, in a positive way! He had lots of trouble in childhood from the ADHD, but I can't imagine him without it now.

    I can just imagine your son getting older and having a woman fall in love with him for exactly the person he is. Don't worry too much about the future. :hug: Even if he didn't choose to get married, he'll always have people who love him.

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  31. Very touching. If only more people were accepting of his differences instead of faulting him for it.

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  32. breaks my heart. I teared up reading this. Keep on being his cheerleader and encouraging him to celebrate his own uniqueness...We all have something to contribute to the world :)

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  33. Tommy is such a bright boy, and just because he's different doesn't mean he won't grow up to be an extreamly functioning adult. You're doing an awesome job and so is he.

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  34. A lot of things are better when there is ice cream for dessert. (or just anytime)

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  35. I'm a new follower! I am an sppech language pathologist and my students with autism/asperger's are my favorite! I can't wait to keep reading and learn more about Tommy!

    Don't you wish IEP's weren't so much paper!? I do!

    www.werginznewlyweds.blogspot.com

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  36. Tommy is a good kid. And you are an excellent mom...

    ...and this was awesome writing...

    :)

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  37. I'm sure your aware of the many online communities that focus on Autism and Aspergers. Rosie O'Donnel from Rosie Radio on Sirus has been doing a number of segments related to this topic. You can find them here: www.rosie.com. The other two websites that are gaining huge attention are Wrong Planet (http://www.wrongplanet.net/) and Autism Speaks (http://www.autismspeaks.org/).

    Perhaps if Tommy has an online community network he can connect with, he won't feel so left-out and more unique. WrongPlanet was formed by a young man with Aspergers specifically for that purpose.

    Melaka

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  38. You handled his concerns like a total pro. And it sounds like he's a fantastic boy!

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  39. Oh, Amber, this was so sweet, and raw. You are a great mom, and I think Tommy is growing up just fine. There has got to be other kids like Tommy in school. Maybe he can become friends with one of them?

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  40. The idea that Tommy is hurting ever upsets me. That beautiful boy should never have a moment of feeling "different". I hate that he does. I'm so glad he has a wonderful mommy to make things right again. Bless you all, Sweetie.

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  41. It sounds like you are doing a great job. It can't be easy for either of you.

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  42. Nothing squeezes my heart like my daughter in pain -- physical or emotional. It's so hard to know when to rush over and comfort and when to stay back and let her work out the social stuff for herself. (Services over, for now) Hugs to you and Tommy; you are both inspiring to me.

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  43. This post is so heartwarming! You're doing a beautiful job and your son sounds like an amazing boy. :)

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  44. What a great post!! He is lucky to have you as his advocate! If you haven't read it, there Is a book called Cowboys and Wills written by a mom...it is fantastic and goes along with the road to acceptance.

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  45. I've had parts of this conversation with my daughter. The "being different" thisg is a hard one. She is really starting to resist the resources in place to help her do well in school and with peers. You're right, when the child is growing inside of you, you have no way to anticipate what is to come. My daughter's challenges are exhausting at best, my I trust there is a purpose...

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  46. Big hugs!! Being a mother is never easy and all kids are different in some way, at some point or another. It's so hard to shield your child from hurt, but we do try!!!

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  47. What a blessing for you two to have each other. He will get married and leave you and we'll have to cry thru that post too. ;) Big hugs!!!

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  48. What a blessing for you two to have each other. He will get married and leave you and we'll have to cry thru that post too. ;) Big hugs!!!

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  49. Now I'm blinking my eyes really fast to fight back tears. I'm working with quite a few children with Autism in my art room this year. I think the "differences" these students bring into the learning environment are positive things. Keep up the great work.

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  50. I've worked with a lot of kiddos and adults who are on the spectrum. Kudos to you for handling it every day all the time. Tommy is a lucky boy to have a mom like you.
    And I hope you both enjoyed your ice cream - sounds like you both deserve it!

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  51. This is so sweet! I wish that every parent of a "special" child felt this way. I sit in IEP meetings for my students and some of the parents say and do things you couldn't imagine. Tommy is so lucky to have you.

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  52. I love this post! Life is hard for kids anyway, and being different is like a curse. But there are so many ways of being different that nearly every kid feels it at some point. Maybe he can seek out other "different" kids. From another perspective, lots of other boys would love to be as handsome as he is!

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  53. I have two on IEPs. And an idiot ex husband that still believes his son couldn't possibly have Autism Spectrum. My youngest's mind is wired different, and someday that will make him amazing. He is destined for great things, and so is Tommy. And for the record... mine says he's going to live with me forever, and he wants ice cream for dinner, daily. -J

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  54. You know, when my daughter was diagnosed with autism, her pediatrician said back in "our day" the kids that saw the world differently were the geeks. Now they're the Bill Gateses of the world and that's not a bad thing...

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  55. A beautiful post... it brought tears to my eyes. You handled that like a pro, Mama.

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  56. You just made me cry! What a great Mum, and what a wonderful kid. I love that, when you talk about Tommy, his Asperger's is just a part of who he is. You focus on the fact that he is a lovely kid, who totally deserves ice cream for dessert!

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  57. Through HS I had the opportunity to work with kids with autism and a deaf-blind student my age...it really changes your outlook on life. Tommy is with you for a reason :o)

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  58. I love your blog...what a way with words. And you, my dear, are an awesome mom!! *hugs*

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  59. I want to reach out and hug you and your boy. And of course you can have ice cream for dessert. Duh. If everyone had ice cream for dessert the world would be a better place.

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  60. Oh, momma . . . let me tell you that tears came to my eyes reading this one. This is such a raw mommy moment you've captured here. With you as his coach, I'm sure that the rough patches that will inevitably come up in his life will be navigated with love. And as for getting married and leaving the house, um. . . we ARE talking about Tommy, right? Have you SEEN your kid lately? He's GORGEOUS! Add another 10 years or so to that adorable face and I'd say he'll be able to snag 20 wives. Of course, wives DO make an awful lot of sudden noises ;)

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  61. My nephew will be five in a few weeks and he was just diagnosed with Asperger's.

    I actually just shed a few tears reading this, because even though my nephew isn't my son, I still have the same worries for him when he grows up.

    I sent a link to my sister to have her read this.

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  62. That sounds rough, but you seem to handle it well. He has a great mama!!

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  63. When you talked about being pregnant and not knowing what would lie ahead with the paperwork, it really struck me. We get pregnant and while we carry that child, we have so many hopes and dreams for them, but sometimes they have other plans that don't involve those hopes or dreams. It's up to us to adapt and re-route our way of thinking to conform to their world and create new hopes and dreams. Sometimes that's hard to cope with but you do the best you can with the resources you have. Tommy is so lucky to have you for his mom =)

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  64. "When you talked about being pregnant and not knowing what would lie ahead with the paperwork, it really struck me. We get pregnant and while we carry that child, we have so many hopes and dreams for them, but sometimes they have other plans that don't involve those hopes or dreams. It's up to us to adapt and re-route our way of thinking to conform to their world and create new hopes and dreams. Sometimes that's hard to cope with but you do the best you can with the resources you have. Tommy is so lucky to have you for his mom =)"

    I completely agree with Tonya's comment, so I copied & pasted. This post really really struck me.

    Tommy is an amazing young boy and I'm sure as life goes on he will only grow to be an amazing young man. He is very lucky to have you as his mom & I think you're lucky to have him as your son.

    Hugs to you as you deal with such a difficult part of tommy's life!!!

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  65. Sounds like you have a great little boy there.

    LisaDay

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  66. It's hard to parent a kid with a social difference ( I hate to say disorder...). But I am so glad that we are in a generation where people are more understanding when we qualify a behavior with "he's got a spectrum challenge. Give him a break." I shudder to think where my eldest would be if he were being raised 50 years ago. "eccentric" wouldn't even begin to cover his differences...

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  67. He is such a sweet, good kid and you are an A+ Mom. I love this post.

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  68. I just want to give him a big virtual hug, ugh.

    My son learns differently too - needs a timer, put in the teacher's chair... it's just what's working now. I hoping that we can keep letting him now how 'special is exactly that'.

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  69. Wow, that made me cry. You are strong.
    Bless you and your family.

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  71. that sounds like its really hard to deal with. I think we all have things to handle that if we had known before we would have said, no way can't do it, give it to someone else. but we get it and we do it. sounds like you're doing great.

    I ran across this explanation that I thought was really helpful for kids with autism and those without. http://momnos.blogspot.com/2010/03/on-being-hair-dryer-kid-in-toaster.html

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  72. You're doing a great job Amber. And that is a very special little boy you have!

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  73. You're doing a great job Amber. And that is a very special little boy you have!

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  74. You are an amazing writer and so truthful and such a great Mom. This made me cry.

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  75. Yay for Ice cream for dessert and bless both your hearts. Sounds like you're doing a fantastic job!

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  76. I would imagine part of the reason Tommy does so well is that he has parents who embrace his differences but also treat him just like what he is- a normal kid.

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  77. Thank you for sharing this tender experience with us. Tommy is lucky to have a mom like you.

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  78. Klutz or not, you have been a wonderful mother. God has placed Tommy in a very good home, & in the hands of a great mother. *wipes tears*

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  79. I have a special needs child too and I think you handled his question wonderfully and have actually given me ideas on how to handle my own 9 year old's questions. You are doing an awesome job!

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