A track star, not a social butterfly

I was pulling into the parking lot of the high school (which is next to the middle school and where the track is located) to pick up Nick promptly at 4:30 from track. The significant element to this story is promptly at the time that I was supposed to be there—and not one minute earlier. I have been in the habit of getting to the track at 4:00 to watch him run and compete with his classmates, but I had decided: not today.
It was a bit selfish on my part, but I needed a break from watching him not be like his other classmates. And I know that sounds harsh, but let me explain...

When I watch him it is so clear that he doesn’t socialize with the other kids, and he so easily seems to get lost in the pack. He sort of just hangs out and waits for a kid (selected by the coach) to help him out. A burden to the team? I really don’t know, and I don’t care, beecause he can be there if he wants to be.  And the kids and coaches do support him and seem to like him very much, so if he’s happy, then I’m happy. So as long as he occasionally runs and does not get ignored—because he could so easily be ignored, and break my heart—then all is good enough. Right?

So yesterday I’d decided that I would not watch him and just show up with the parade of other moms or dads driving in to pick up their own track-star teenager (hey, we can dream), while the kids were all waiting with their selected groups of friend, and Nick standing just slightly off to the side in his group of one, but looked just fine, happy enough, and waiting like everyone else: Like a typical 8th grader…and the reason why I came on time!

Ignorance is bliss is what I said to myself as we pulled out of the school and Nick was showing me his track wound (apparently, a little scrape from falling while jumping hurdles), which required a large bandage patch on his elbow. I played with fire and asked him if he had friends at track and he quite candidly said: No.

Ouch.

But it wasn’t a No in a sad or an embarrassed way, as I would have been if asked that question by my mother and said No… which I wouldn’t have said even if it were true. I would have told her that I did, and would have been upset that she even had to ask.

But I’m not autistic. And Nick is. And his autism doesn’t allow his lack of friends to bother him; actually, he seems to prefer it and I’m not sure if that’s a good or bad thing. He just doesn’t care about making friends and seems to run away from the prospects of a kid coming near him  to chat.

I think it is a combination of shyness and the lack of verbal ability. As a late talker and burdened with the inability to make conversation other than to simply answer one word questions (or nod his head)… he doesn’t like to be placed in a situation to chitchat, no matter where he is. (And yes, he’s had years of social skills classes, but it doesn’t seem to be catching on in the real world—at least not yet.)

When I think of this issue, I think of his very first school psychologist. It was in a different town than we currently live, and he was helping me with Nick in kindergarten to just starting the 1st grade. On the eve of our move and Nick’s last day at that school, we were chatting and I fought back tears while telling him that I was worried that he would never have friends and would be alone in life. And he told me, and I still remember the exact expression and smile on his face, “Oh, not a kid like Nick!” (Meaning that he would be surrounded by friends because he’s such a great boy.)

I wonder if that’s still true.

As it stands today, his friends consist of his 41 year old uncle (my brother, who has ADHD and likes the same shows as he does and can easily be just as silly), and the neighbor's kids, who are 5 and 6, who he finds entertaining to watch and will approach them when they are at our house.

I do have a couple of friends who have kids with ADHD and autism, but even when we get them together, it’s like they’re playing apart. It doesn’t work. They don’t mesh. But it doesn’t seem to bother Nick; instead, it seems to amuse him that they don’t socialize with him—like Nick would prefer not to have to socialize with them—a kind of relief, perhaps, but he seems perfectly content to just watch the kids and be among his own group of one: memberships not allowed.

The “label” thing

Autistics, Aspies, Special Needs, a Disorder, my Daughter, my Son, Other:

What do you label your child? Or better yet, what does your special needs child (or adult) prefer to be tagged with?

This is not a hostile post, but I’ve noticed that people call their child (or themselves) with at least one of the aforementioned tags. And it’s interesting to note.

Personally, I’ve never liked hearing the “autistics” and “aspie” label, it has always rubbed me the wrong way--not sure why, but it just does, but I’m not a person with autism or asperger’s. However, I have read recently through another blog that a few people with Asperger’s syndrome do not like to be called aspies--someone actually said that, for them, it was like being called the “R” word. Interesting.

I’ve mentioned before that I don’t like labels and I have not labeled Nick with autism. That is, he does not know that he is on the autism spectrum--like his sister. He does not know what PDD is, nor does he know about MR or even that “R” is used in a derogatory manner--by horrible people. I know this because he has never come home and asked what the R-word means, but he has come home and asked me what: dork, butt head, idiot, nerd …all mean … No, I don’t like it either, but he hears it and wants more input. And it was lesson one in labels.

He knows his sister has “autism” because she is on the severe end of the spectrum and we use the label as a mere explanation for why she cannot talk and has behavioral issues. And why she had to go to a residential school.

Nick doesn’t question labels for himself. He just knows that he has an aide in school because he needs the “special help” and he wants the help, for now. But I am thinking that this may change for him. He might want a further explanation for the “special help” -- someday. Or perhaps some “bully” might offer him an explanation for him and open his eyes further into the world of labels.

I do know that my brother wanted an explanation for his “disorder” because of a childhood troubled by bullies. But he never got this conclusive label until he was an adult. He pursued it and was tagged with ADHD. And to me -- his sister, and someone who understand disorders -- I was relieved for him; I was relieved that he had the "diagnosis." It provided him with the explanation for his behavioral problems growing up -- the remedy; the “why” he was so different from the other kids; the mystery solved. It was a revelation for him and a diagnosis that happens to come with its own label -- like a present. Or is it?

I suppose it’s up to him if he wants to use the "label thing" -- it’s his label. I guess the choices are that he could ignore it and continue on with life with satisfaction that he understands more about himself and his DNA, or he could use it and tell the judging world that he has a disorder so give a little won’t ya…

To note, he has always used the I have “special needs” tag before he was diagnosed and sometimes I believed he used it as an excuse for fearing the world or not getting what he wants. And, as of late, I’ve often wondered if he’d switched to the I have “ADHD” tag to let the world know that he’s now "officially" at some kind of a disadvantage than his competing peer. Or perhaps he’s learned that a “label” really doesn’t get him very far.

I don’t know.

A life that seems to mirror your own

I love Christmas! Not only because it is a joyous time of year with winter snow, sparkling lights, and gift giving, but I also just love the little extra reds and greens that are unevenly intertwined within my daily mail’s bulge of bills--the holiday cards. It’s so bittersweet, but my son only sees it as sweet!! As he should!

It’s a form of catching up, especially from people that I don’t call or visit as often as I would like (isn’t if funny how we say that: “as much as we’d like!”). Anyway, most of the cards that I receive (and give) are those with photos of their kids. To me, it’s a fun glimpse into their life—a little peek—and to see how much bigger and older their kids have grown. Some of these yearly cards I keep from year to year, and I have half a mind to show you a snapshot of that drawer of mine!! There is one family that I especially like to receive a card from; it’s always the same picture from year to year (same pose in front of their tree). This family is very unique because it’s the family of a friend whom I've known for over 20 years. We talk here and there, meet for dinner on occasion, and when we do meet up or talk, we know what to say and pretty much will pick up where we’ve left off—like time hasn’t passed.

The very last time we talked I was troubled. It was a month before Meghan was going off to her new school (July) and we had them over in June for a barbecue with their two kids. My friend and her husband were rubbing my shoulder and hugging me and offering me their support, encouragement and good friendship. But then again, this is what friends do, especially a friend of more than 20 years. But don’t get me wrong, this wasn’t the part of our visit that was troubling to me; the troubling part was how I noticed that her 4 year old daughter (a child that took years to conceive) was not developing the way that children her age should develop.

She was not responding to questions, she would not respond to direction, she would not play appropriately with toys, and she had trouble focusing on one activity at a time.

I didn’t know what to say as my friend and her husband sat next to me and looked at me like I was the only one needing consoling. I also knew that their older child had just been diagnosed with ADHD and Tourette syndrome, but the only thing I said about that subject was simply asking about his well-being and school. I wanted to let them offer me more… or better yet, I was hoping that they would. But no more came with their story.

I know for fact that her brother’s child has autism and now she has a child with ADHD (which I believe is on the spectrum) and now, again, from where I was sitting and observing, their daughter seemed much worse off than their son was at her age. She actually reminded me of Meghan when Meghan was 4, but I sucked that thought down with every gulp of my wine.

The most troubling part of this situation is that my friend (of more than 20 years) does not want to talk to me about her kids’ issues, especially since I know that her daughter has been in early intervention since she was three—but that is all she ever told me—even though I had gently prodded for more. I don’t think that she’s in denial about her children’s problems, but I think that she thinks that they will get better, unlike my situation. Then again, maybe that is a denial. And I have not taken this lack of divulging, or confiding, personally. I certainly know how tough it is dealing with two kids with issues, but, to me, that’s the point that I’m trying to make and to get through to her: The fact that I’ve been through it all, from diagnosis, to where and how to get therapeutic services, to advocating for kids on an IEP within a public school systems, and, if not most important, offer emotional support as someone who knows what she’s going through—as she already knows—and something that she and her husband have always been so willing to offer me.

I just don’t understand. How do you not utilize and appreciate the knowledge and experience of a friend who has been there?

The Bully Factor

I was visiting another blog and one that I like very much called Teen Autism and she talked about a topic that sent me back many years ago. It’s about bullies and that this mom has to homeschool her autistic son because of the unrelenting bullying at school. I commented that, thankfully, I don’t have that going on with my son, but I certainly had with my younger brother when we were kids. He has ADD/ADHD but we didn’t know it back then (1970s-1980s); instead it seemed to be a learning disability and a bit of quirky behavior; but he just couldn’t catch a break with his fellow peers. Some of the boys in the neighborhood would be so mean and violent, too. I remember kids would make slingshots and my brother was always the human target. Sure, they wouldn’t be mean to him while I was around, but I couldn’t always be around. They would steal his bike and toss it in the woods; throw things at him in passing; and yell and jeer at him.

One day my parents had the presence of mind to send him to a psychologist, but they weren’t happy about it. I think the school psychologist suggested it, so they thought it would be best to take him. I think that my parents wanted everything to just stay simple and be okay. Then one day I was asked (perhaps told) to be the guest visitor and speaker. On that day, the psychologist asked me about my brother and what I thought about the bullying. I was in the room with both my parents and my brother and felt like I was some specimen sitting there under a microscope being examined by all. The psychologist told me that my brother thought that he embarrassed me most of the time. How dreadful. I remember that I tried to play it cool, and that I didn’t want my emotions to show. I told him that it wasn’t a big deal to me that he was teased. I lied. But I didn’t want to tell the psychologist, my brother and my parents, for that matter, that I felt bad for him (and for me) that I had to witness kids mocking him behind his back. I didn’t want to tell them that I remembered the day that my brother rode his bike to McDonalds to get us both a burger and fries, and that he came back with barely anything left in his bag because the bullies got him. That I wanted to run to my room and cry my eyes out because this poor kid couldn’t even take a bike ride without being on some bully’s radar. Did he cry or complain? No. He just accepted it as if it were a mere fact of life. He told me, most matter-of-factly, that “they were after me and I couldn’t make it home with the full bag” of goodies.

I don’t know exactly when it ended. If the inauguration into manhood thwarted the bullies and that they had just found something better to do like “date” and “girls.” I think girls had something to do with it. In high school I had good friends and when my brother became a freshman, the rules changed. My brother became off limits in respect, perhaps, to his older sister: trust me, there were comments. But one of the most interesting days was when my brother’s number one adversary (if not the leader of the bullying pack himself) offered to walk with my brother, as a friend, the half mile from the school bus stop to home and, from what I understood, they had a nice greeting, shared some good peer conversation and ended on this high note: “By the way, tell your sister that I like her.” Who had the power now, baby!! ;)

Michael Phelps' Story--An inspiration to children with a disorder

The Michael Phelps story is an inspiration to anyone who has special needs or has a child with a disorder. (Here) I don’t blame his mom, Debbie, for being jubilant and expressively proud of her son. Lets face it, any mother of a child diagnosed with a disability and who has worked as hard as she has at helping her son overcome his disorder, as well as advocate for him throughout his school years, deserves to be as enthusiastic as she wants—she is his number one fan.

I say this with conviction, as I read another person's blog and that this person pointed out that she was a little too enthusiastic and that she needed to calm down or else she could hurt someone in the stands, so to speak, but that was the gist of his comment. Obviously, this guy does not have a child with special needs or understands what it’s like to raise (or have raised) a child with a disability. Not only did this mother help her son overcome his deficits, but he is winning Olympic metals like no other.

As you might already know, Michael Phelps was diagnosed with ADHD as a child. And as a mom, teacher, and advocate for her son, Debbie Phelps had worked to overcome her son’s disability by engaging him in activities that evoked excitement and passion—such as swimming—which has proved to be an effective form of therapy—in more ways than one.

Some people question the relationship or link between autism and ADHD as indicated in this link here. In my opinion, as a mother of two autistic teens—one severely impaired and the other on the PDD and aspergers side of the spectrum, and who, incidentally, also has a brother with ADHD—interestingly enough; and since some doctors/researchers believe that genetics play a bigger role in these disorders: autism, aspergers, PDD, PDD-NOS, high functioning autism as well as ADHD, is it fair to say that all of these disorders can be included within the autism spectrum or under the "umbrella of autism”—since it’s quite a large umbrella—indeed, and that there are interesting and correlating similarities as identified in this link here?

More on Michael and Debbie Phelps from this ABC video.

Let me know your thoughts?