Socially Unacceptable

I was at the comic store with Nick, again, and we had a bit of a social opportunity… but then again, not so much. Nick was trying to look at comic books, as he always does when we’re at the mall, and the guy who worked there was straightening the comics and making sure that all was perfect. Nick was hovering and avoiding as he usually does when someone is in his, um, “space.” Nick wanted to look at the section that the guy was straightening (but not really needed much since the area looked great as it was). The guy spotted Nick and said “How ya doing buddy, everything good?” It was a nice way of saying how ya doing dontcha just love comics??? And, as always, I’m someone there, too; located just off center stage, set back to the side but safely in Nick's “protective” eye view and ear shot… “Not too far away, Mom,” Nick might say. So when this guy said that to him, Nick responded in his typical way… he turned away from the guy as if he wanted to forget that the guy was trying to talk to him.

Ughhhhhh!! Two years of social skills class and this is still what’s going on… I want my money back!!

So there I was (as usual) to speak up for Nick and say, “Yup everything is fine.” Now go away so I don’t have to stand here all day, buddy!!! The guy looked at me in a strange sort of way and nods. I understood this strange look all too well. It was pretty much equal to: What’s this almost 15 year old kid doing hanging around with his mom; and, furthermore, what’s the mom doing answering questions for him … hey, cut the cord already, lady!!

I know, I know. I’m asking myself the same question. It’s the same question I ask myself whenever we’re at the mall, the supermarket, Target, and Nick still needs me in his range of sight--no more than 10 feet away. And, needless to say, he is still so far from being able to stay home by himself, even for a few minutes. He’s just not there yet in his development. Simple as that.

I’m trying to question if this is an immaturity? His disorder? Or am I hanging on too tight and need to “cut the cord” already and force him to be out of my sight view for a few minutes at a time to exercise this developmental step. Or should I wait until he tells me that he’s ready and not force it? Trust me, I've tried to force it but he doesn't like it and I'm always afraid that he might panic.

And back at the comic store was a comical sight to take in: the guy was spending much of his time hovering around Nick and the comics section straightening bookshelves that were already perfect; meanwhile just a mere 15 feet, or so, away was this appalling sight.

Or perhaps I just have a case of OCD? Or perhaps I’m just getting back at the guy who made me feel like a bad mum…

Consolation of raising a special child--or is it?

Meghan still loves Barney, you know the big purple dinosaur… although I've noticed that the show has new kids from when she used to watch it--years ago, and as I’m listening to it right now from down the hall, I hear a new Barney voice as well. Oh, nothing stays the same--well almost nothing, but Meghan couldn’t care less, she’s jumping around to Barney and the music as she did when she was still a baby sitting in her walker--just bouncing around with the same big smile on her face. Even though she’s now 13, it’s still cute as hell to hear and watch. A child who can do more for herself than she could as a baby, and learning math and spelling, and long since has learned to write her name, still finds Barney a great joy.

Every time I see moments like these, from either one of my kids, I can’t help thinking that these are the moments that mothers (parents) of typical kids can’t relate to or identify with—among other things; it’s kind of like a weird consolation to having a child with autism and other developmental disabilities; that there is a piece of them, an innocence that may never mature—and likewise, child-like behaviors that a parent will never tire of; but, also, a fine, fine line of crossing over to a damnable offense, and an unsettling future.

The Breastfeeding Debate--it's so much more than that...

Sometimes I have to laugh at parents who sit and worry so much about such matters as whether to breastfeed and not to breastfeed (ongoing debate), and that these young mothers become so anxious about possibly “screwing up” the development of their child so early on…. These parents are made to feel guilty and shameful, and are usually open for ridicule from the “expert moms” and doctors who believe that they should over not.

As a mom who was not successful at breastfeeding her kids, Nick was just too hungry to be satisfied by my milk supply, that I would lean toward the bottle to supplement and then just allowed the convenience to take hold—because I knew my son and I knew what was best for him—case closed. Did I feel bad about it? Yeah—I’m no different than any other mother, but I also felt like a better mom for listening to my gut and not the words of other so-called "wiser” moms, doctors, and the damned “baby book bible.”

My point is that there are so many other elements to parenting—so far beyond those first few months and the breastfeeding issue—that parents really do need all their energy and focus placed on these other elements of their child’s development, progress and happiness. Trust me. Focus on getting to know your child for who he is and pay less attention to comparing, competing, or preaching.

One day when Nick was about 7 months old, or so, we were dining at a small restaurant in Boston and Nick was holding his bottle (Playtex) with one hand. We thought nothing of it because that was what he was able to do at that stage of his development. The people at the next table to us also had a son of about the same age and just had to say something about Nick. They were so impressed and in awe with his ability at his age that they started insulting their own child and his “lack of” abilities.

I didn’t walk away gloating that my son was a genius of all babies his age and soon to conquer the world as Nick the Great—hell, I already knew he was great!! But I took his abilities at what they were for him at that time. We all acquire our own skills, talents, concepts and opinions that others may have yet to acquire or own—heck, I’m still trying to acquire some myself, but the one thing that I did know about my son at that early age was his ability to sit, attend, and absorb information—even early on—and these are the “bigger things.” And more importantly, I learned to trust my own instincts about him—as my shield and armor—because I knew him so well.

Flash ahead a few years and we knew that Nick was slower to develop and needed special help; but, again, I also “knew” him and I knew he was taking in information and asking for names and labels and absorbing everything that especially interested him, regardless of what others were saying and prejudging his abilities.

So when a group of doctors—highly acclaimed in their field (who says so anyway??)—told me quite conclusively that Nick would be nothing more than a trash man in life, I thought what a fool I would be if I listened to them and not myself—someone who knew him and had learned to trust her own instincts. To actually believed in them more than I believed in us. To believe the words, convictions, and thoughts of others who had only known him for a few short hours as opposed to my expert opinion as someone who had known him his entire life—through and through—as only a mother could. To actually be swayed to believe or think differently of my child than what I had already come to trust in myself; well then—I would be a fool.

Good Enough Mother

The British physician D. W. Winnicott coined the term “good enough mother” in
part to help mothers who were overly anxious about their parenting skills.
Rather than worry about trying to be perfect (whatever that meant), he urged
them to relax, trust their intuition and realize that their children needed a
mother who was caring, alert and reliable — in other words, good enough.

The author (a psychiatrist) of this article posted in the New York Times used the preceding coined “good enough mother” as an analogy in hopes for helping doctors become “good enough doctor” as far as adopting a better bedside manner was concerned.

I’ve found it interesting that parents of typical kids--and even doctors--can be “good enough,” at their jobs, but what about parents of autistic or special needs kids?

It is clear that mothers (parents) of autistic or special needs kids have been left out of this benefit, because they are forced to be so much more than “good enough.” We simply cannot just relax and be caring, alert, and reliable. We have to go all out and be superhuman, or Herculean as someone had once said to me, smart, stable, determined, independent, advocates and, well ... fighters.

One must wonder why we are not given more credit--as parents of autistic or special needs kids--and be offered the proper acknowledgement for working harder than our typical-parent counterparts have to work. This “credit” can be in the form of offering more supports such as funding for classes, so that we can learn (instead of fight) about how to raise our kids with disorders, and offer affordable health insurance so that these parents can actually pay for medical and therapeutic services and other necessary supports that they may need. Instead of being left to feel alone, work harder and go broke.

It is refreshing reading the terms applied to the “good enough mom” theory and letting go of the notion that parents have to be perfect since there is no such thing as “perfect,” and actually set “attainable goals” of being simply “good enough” is wonderful advice for any mom—as it takes the edge off of what is known to be the hardest and most stressful job.

But I’m afraid that it simply does not apply to all parents …

Parent of autistic or special needs children are not given a real sense of direction when they first learn about their special needs child and/or a real guide or services to use to set “equally fair" and "attainable" goals; instead, there seems to be no desire to actually help these parents--parents who clearly have a much harder job! It’s a form of discrimination and a failure to acknowledge that there is more than one type of parenting going on—the parenting of “typical kids” and “atypical kids.” So where is the justice? I fear that the most troubling part of this issue is that we are being set up to fail (or at least faced with a horrible sense of it) before we can even try—as we are so willing to do.

And if one wonders why there is so much money being paid out to special schools, residential facilities and the like, then understand that it is obvious that these parents are not given the chance to simply be a good enough mother by being offered the supports that they need.

This is so strange to me because we all realize that there is so much more expected of the parent with special needs kids than there is of the “good enough mother,” yet we are often overlooked, if not clearly avoided.

There is another saying that “Raising kids is the hardest job in the world.” This, to me, is incomplete and just another form of discrimination, because it should continue with “And raising special needs kids is even harder...”

“Raising kids is the hardest job in the world … and raising special needs kids is even harder...”

Getting credit where credit is due…

The Power of Raising Special Kids

One day a friend told me that she was not materialistic. After sucking my left lung back in from laughing so hard, I said, facetiously, “Well, let’s see:

You have a 4-carrot diamond ring on your left hand because the 2-carrot one wasn’t big enough…
You drive a car that rhymes with “bummer…”
You know the staff at Coach "personally," as you do the customers (kiss, kiss left to right...)
You tell the world that you like, what’s that word: “Bling”

Mmmm, you’re right, can’t see why you would be? ;)”

She takes this personally. But I don’t think there’s anything wrong with materialism; it means that you like “things” and if you can afford them, then lucky you. She’s a great mother and a generous friend, so who cares.

I bring this up because once a long time ago, I, too, liked “things” (and still do) but the only difference between me then and me now is that I'm not judging myself or competing with my neighbors, as I once did. I no longer care about having a Volvo in my driveway, or living in a Mcmansion. The change: my kids’ diagnosis.

It's very sobering to find out that your children have developmental problems and working to help them is all you can imagine “having” and “doing” in your life. I remember this feeling clearly, it was an eye opener and a relief, as strange as that sounds.

I was no longer that person who needed things to feel better about herself; instead, I needed to help my children live a functional life, and had a life’s work ahead of me. It wasn’t the fact that I no longer had time for the mere silliness of “keeping up with the Joneses,” as it were, but it was more of the fact that I started viewing it as silliness. Mind you, that before my kids’ diagnosis--and this life altering view, I was making it my life’s mission to move on and UP. This new revelation of mine also came with the loss of some of my friends; people who live in that idea of a “perfect world” or fantasy of one, no longer find YOU attractive. And YOU no longer find them attractive, either.

It was very liberating to lose these friends. I was no longer fighting with them for a place at the country club; but, instead, I was fighting for my children futures. A real dichotomy, now isn’t it?

The most liberating part of leaving behind this “past life” mentality was that I found myself on the luckier side of this dichotomy, like it was a belated gift of understanding what life was really about—and glad that I was wise enough to accept it. Because I will tell you, the other life has a powerful way of sucking you right in. But the power of special needs kids is so much stronger and richer, and I think happier, too.