*Freaky Friday*

I figured that if I gave my post a title like FREAKY FRIDAY, it might lighten up the subject matter. Lately, it seems Friday has become the day for tragic posts involving my son’s development. As I often do, I’ve entered that stage of acceptance where I begin viewing his newly diagnosed syndrome with humor. Laughter is the best medicine, right?

My little guy and I spent a considerable amount of time in the pediatrician’s office yesterday. Have I told you how much I love our pediatrician? So does Joe.

Yes, he still has ADHD and we’re adjusting his medication to help those symptoms.

It also seems that he has Aspberger Syndrome…which is what I have suspected for quite some time. My gut was right.

When he was two and we were living in Boston, Joe went to an amazing preschool run by an amazing teacher. Her name was Siobhan. Siobhan and I both remarked that he had trouble making eye contact. It was then that I became aware that he didn’t play with the other children. He was just never fully socially engaged. From the age of two, Joe preferred building extremely complex structures with Magnetix. So much so, that one day, Siobhan saved one of his structures to show me. It was two feet tall and perfectly symmetrical in design and color. That structure presented a troubling mixture of amazement and alarm.

That summer, we went to Martha’s Vineyard and I bought Joe a wooden box filled with complicated Curious George puzzles. He sat in a restaurant and completed all four puzzles in less than thirty minutes and without any help.

When he was three, he became obsessed with two DVDs from a NOVA series called The Elegant Universe. He watched it every day, choosing theoretical physics, string theory and Michio Kaku over shows like Sesame Street or Thomas.

My guy has never really made a best friend. He’s not like the other guys. Group situations either cause him to find a solitary task or behave awkwardly.

In New Hampshire, Joe went to the Exeter Day School. It was there that a boy punched our four year old son in the stomach on the playground. Later, at summer camp, I watched a boy push and kick him while I sat in the carpool line. He was yelling at the boy to stop and the teachers leading the camp were nearby, but no one helped him. When we brought the situation to the staff’s attention, the woman said, “Well, Joe tends to go off by himself. He doesn’t play with the other kids…” as if was Joe’s fault that he was being hurt. That woman never apologized or explained why Joe’s behavior was never brought to our attention. We pulled Joe from that camp and cancelled Gwen’s planned preschool attendance.

Kindergarten began and Joe’s issues became more evident. Carpet time proved to be one of the biggest areas of difficulty. Joe wanted to lay down. Joe invaded the space of other children. Joe wasn’t picking up on social cues.

We moved to Maine that year and Joe finished Kindergarten here but his troubles have continued. Trouble with carpet time and coordination and bullying and tears.

Last year, Joe didn’t qualify for the 504 because he is too “academically advanced.” In the meantime, he struggles socially and his self-esteem has plummeted. At bedtime the other night, Joe said, “It’s easier for me to bad than it is for the other kids. For them, it’s easy to be good.” I assured him that he’s a good boy. A smart boy. A kind boy. A loved boy.

His diagnosis doesn’t change the way I view my son. Not at all. However, it makes me more aware of the way he is treated by people who don’t know. Strangers, teachers, family and friends who don’t know or understand that he is not purposely being naughty. I don’t want him to feel labeled, but I do want to empower him. Mostly, I want him to know that he is loved. I want him to go school and enjoy his time there without feeling like a bad boy, or a different boy or a boy who will be picked on.

And so, we begin the journey to give our son what he needs.

Comments

  1. Patty says:

    I’m very well familiar with Asperger’s since a close friend of my Granddaughter has it and….I’ve watched Maeve blossom in recent years. Yes, she will sit, for hours, engaged in a project, a book or television but she’s now become a great deal more social and outgoing at age twelve. It’s been rough for her Mom, especially in dealing with the village idiots in the Carmel school district.

    We were just at a gathering where Maeve joined us and she floored me with a huge warm hug and kiss and a “thank you” for including her. Quite a big step from the little girl who kept a safe distance from others.

    Hope, Hugs and Prayers for sweet Joe! And you!

    • No. 7 says:

      That’s encouraging, Patty. I don’t think he has a bad case of Asperger’s and his therapist agrees. We’re thinking that with the right skill set and therapeutic approach, Joe is going to be just fine. I love your story of Maeve…

  2. Traci says:

    I love Joe with all my heart!
    I wish people would consider statements made, before they “word vomit”….i see this with my other nephew and a friends child. Due to the fact that we are close to this, my girls are pretty sharp on picking up on the cues kids give and i am so happy that they are sensitive to this. Bad boy? Hell, no! Intelligent, adorable and my boyfriend forever! XOXOXOXO He will be a perfect and very successful man!

    • No. 7 says:

      Word barf by the Beulahs of the world will never stop. Grumpy old ladies always have something to say, don’t they? Good thing Gwen has his back!

  3. You are lucky to have such a special boy, and he’s lucky to have you. And now you get to begin putting the pieces of this puzzle together for him. He will blossom, I have no doubt.

  4. Kirsten says:

    I wanted to wish you luck on this journey. My young brother was diagnosed with Aspberger’s when he was a little guy, and my parents dealt with many of the same things you’ve touched on here. I want you to know that Maine has a lots of wonderful resources for kids on the spectrum. The Autism Society of Maine does tons and tons of gatherings and works hard to provide support for families. There is a wonderful summer camp in Farmington, Maine (Mt. Summit) that caters to kids with Aspberger’s and autism that my brother and his friend (who sounds very much like your son–very academically inclined, but has a tough time with social cues and the like) attended for years. My mom has been apart of a support group for years, which has led to friends for her and my brother, and I know there are support groups all over the state.

    I only know a small part of the joy and frustration that my parents have gone through over the years with my brother, but I do know through watching them that a parent who is willing to advocate for their child (and you certainly seem to be one of those people) will watch their child grow in such amazing and wonderful ways.

    • No. 7 says:

      Thank you, Kirsten! This is wonderful information to add to our growing list of resources. We’re still digesting the information and contacting the school to request another 504. He’s going to cognitive therapy for his ADHD, but now we’ll certainly be working with this new diagnosis. I love the idea of the support group and the camp. Can’t wait to share this information with my husband tonight. Best, Kelli

  5. kimberley! says:

    I read your post the other day about watching Joe on the schoolyard, and I teared up..because I know. My loving, precocious, sensitive, literal, artistic, intelligent, over focused, one sided conversationalist, and often frustrating child Elijah, lives in this world. When he was in nursery school, after a few months his teacher approached me, so apprehensively, “Elijah should be better acclimated to nursery school by now…we’d like to have him tested..” Only a wave of relief swept through me. There was occupational therapy, I learned about his difficulty crossing his midline..Swinging a bat, buckling his seatbelt, moving anything from one side of his body to the other was a struggle, Too much noise could trigger dispair for him. There was behavior therapy for his “meltdowns”…There was behavior therapy for me as well…The Adhd, last minute, disorganized mom, needed to learn how to parent a different way. There are so many stories, that I love to share about our journey. Rearranging the living while he slept resulted in a four year old stomping down the steps in astonishment, “what in the neighborhood is going on here??” He went and grabbed the timer, which i used for transitioning for one task to another , and said “Mommy when this timer goes off I want everything back to the way it was!” Change is difficult. The way he reasons is genius, although it’s not always evident to the teachers that teach the kids in the box. In fourth grade his school therapist and teacher were very concerned his thoughts weren’t lucid, “Really?” i asked… The school social worker explained “Well when he was confronted about a math problem being wrong he said, how do I know you are right? You don’t even know who the first president of the United States was, to which his teacher replied “it’s George Washington” “No it’s not” he told her matter of factly and refused to talk to her. “Well” I said ” Elijah just watched the show about the continental congress and Articles of Confederation on the History channel, and the first president was John Hanson” the therapist said “well that doesn’t have anything to do with math, he just pulled it out of no where.” “No he didn’t , you just don’t understand how Elijah thinks, I will explain it. He thinks he got the math problem right, and believes that since you teach that George Washington was the first president, that you can be wrong about this too,” I can always figure out where Elijah is coming from , I just have to retrace his thoughts, and now at 13 he is much better at explaining how he comes up with something. I did a lot of advocating for him and what he needed, at school.. I had a really great support system of friends. Elijah broke his leg a few years ago and the doctor told him it would be twelve weeks before he got his cast off. On the 12th week, Elijah anxiously awaited for the doctor to tell him he was taking the cast off. He came in and slipped the xray into the lightbox upside down telling him it wasn’t completely healed. ..Elijah went to snatch it off and said “You have it in the wrong way!” After twelve weeks of working with Elijah, the doctor should have been better prepared for this. He turned to me and said “God bless you, you have a handful being his mom ” to which I laughed “I am honored to have Elijah as my child, I have learned more from him about being a mom and have only become a better person because of , He is MY gift” If I can give you anything about how you look at having a child with Asperger’s, it is that. A gift. Embrace your journey with Joe, kid’s like him are few and far between. OH and humor works great with it! I’m here if you need me me. xo

    • No. 7 says:

      Oh, Kimberley. I do believe Elijah and Joe are cut from the same cloth. Joe is so absolutely literal about everything, trouble crossing the midline and a mom with ADHD. We’re going to get through this together and its’ turning out that we all have a fantastic support network. We’ll talk.

  6. Jackie says:

    Kelli, I cannot imagine the frustrations you feel on the struggle to find the “right path” for Joe. It seems that with the right teacher and support, he could find success academically and socially.

    My own experiences with Asperger’s have been confined to my role as a teacher. A few years ago, I had a student, Luke who was on the spectrum. Academically his skills were above average, but socially & emotionally, he had difficulties. At the beginning of the school year, I noticed the other students were cold to Luke. They would chose him last during games, or avoid playing with him. Something had to give, as he was turning off. In meeting with his mother, we decided for ne to sit down with the class and explain Asperger’s.
    And so, one afternoon Luke went on a walk with my classroom asst to the office, while, I sat down with the 21 other 1st graders. I gave them a watered down, 1st grade appropiate explanation of Asperger’s Disorder. They asked questions and seemed geniunely interested in making school a safe and happy place for Luke.
    From that moment on, the ignorance stopped. That little bit of information made all the difference in the dynamic of the classroom. They permitted Luke to be Luke- by letting him talk about Star Wars (again), letting him have an extra turn with calendar, and most importantly including him in conversation and play.
    While I don’t know if this is an option for you nor can I promise a similar outcome as mine, but that school year was memorable to me, because of that class. That little bit of knowledge opened the door for acceptance. Luke is now in 5th grade. While things have not always been smooth, he is finding success academically, emotionally, and socially in school.
    Good luck Kelli!

    • No. 7 says:

      Thank you, Jackie. I think that is a fantastic idea and it’s certainly an avenue I will explore with his teacher. Socially speaking, we definitely see that Joe is shutting down. Now that we have a diagnosis, I feel confident that the school will help him. My biggest fear is that he becomes so disenchanted that he stops working so hard on his school work. He’s so SMART!

  7. May says:

    Maybe a little fast forward glimpse at the future….

    My friend’s son Scott was much as you describe your son as a child. This year Scott is finishing his senior year in college. He is studying computer engineering. He has an amazing aptitude for mechanical workings and can function on problem solving that most of us would find tedious.

    He has attended a small college in a rural setting. I will never forget how he told me freshman year that he had friends there. That may have been a first for Scott. True friends, I mean. People outside the family or neighborhood who accept him for who he is.

    I have seen him experience real happiness and contentment in these college years. There were some hard years growing up-socially. But I think his whole family feels optimism about his future.

    I hope your own story will run along these same lines. I know the loving support of Scott’s family made a huge impact on his story. So, I bet the same will be true for your son.

  8. So glad he got a diagnosis, now you all can move forward with the right treatments for him. He sure is a cutie, I love his blue eyes :)

  9. Katie says:

    Kelli, I want to give you both a big hug so bad it hurts. My husband has Aspberger Syndrome. Unfortunately, he didn’t have the kind of parents who recognized something was wrong. His sisters with their various issues kind of took over his parents’ attention, and so, because he was always fading into the background everywhere else, he faded into the background at home, too. I’m glad Joe has you and your husband. You’re both obviously very caring parents, and I’m thankful that you recognized there was a problem, instead of ignoring it like Jeremy’s family did. That will make all the difference.

    Joe’s obviously a very smart, very special kid. He has gifts that will make him succeed. He will grow into a smart, accomplished young man, and it will be because you loved him and saw all of his wonderful potential. I want to punch someone over the bullying Joe has had to endure and probably will still have to endure, but I feel better knowing he has you. My husband didn’t have a you, and now we’re having to overcome obstacles that still stand in his way. Because no one saw his potential, no one saw all of his wonderful gifts. But someone sees Joe, really sees him and everything that makes him great.

    How’s the kitty cat working out, by the way?

  10. Amber says:

    Kelli, just a note to offer you my support. He is such a beautiful boy and my heart aches to think of him being picked on like that.

  11. He is soo cute, and it is heartbreaking that he says it’s easier for him to be bad:( but he is lucky to have a mom who is on top of things and who will protect him:) Thoughts and prayers for you and your sweet boy……

  12. ArtsyNina says:

    Big Hugs Kelli and Joe :) I’ve loved reading all of the comments here – seeing, FEELING the support -it’s wonderful. In another time, not too long ago, there would have been no way to connect with all these other moms, siblings, and friends who have gone through similiar experiences. I have no doubt that Joe will be successful and well adjusted. When Momma is armed with the right information and support, everything is possible.

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