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?

When you think that someone is autistic…

Ever since my children were diagnosed with autism--both at a very young age--I did what all good parents would do and read everything that I could get my hands on about autism. Actually, I studied autism, aspergers, PDD and MR; I knew that I needed to become an “expert” in the field so that I could, not only, advocate for my kids, but also understand how their brain worked and how I could help them better.

One day, many years ago, we went to visit family for Thanksgiving in another state—like an in-law family reunion (holy hell, but I survived). It was also about a year or so after my kids were diagnosed and I was still reading whatever new book there was about autism. On the drive back and while we were approaching the NJ turnpike’s tollbooth (I remember that exact location—freaky) it just hit me like a ton of bricks--really. I turned to my husband and said “I think (so and so) has Asperger’s syndrome.” I was so sure of it.

His eyes blew open (he, too, was reading and learning about autism) and he agreed.

The most interesting part of this discovery was that this boy in question was 4 years older than my oldest child and quirky was only one way to describe him. In the previous years, and before I knew about autism, we had probably seen him a half dozen times or so, so we knew that he had some obsessions and quirky-like behavior, but we all thought nothing more about it. He was very intelligent and just seemed to know things so we could just so easy overlook everything else.

Conversely, my kids were so easily singled out by these family members because they “weren’t” keeping up intellectually. It’s interesting how this is the only marker people use for signs of problems.

So now comes in the in-law who is studying disorders—um, that would be me.

What does one do with information like this? Really? I told my husband to tell his sisters and see what they thought. The unfortunate part to this path to discovery was that I did not find it my place to tell my husband’s family what I had thought about a member of their own; even if it was just my caring and “educated” opinion that he should be evaluated by doctors.

The real sticky problem here is that this boy’s parents would never, ever, entertain the fact that their son has a disorder. They were perfectionists. Type A personality over achievers who “clearly” would either ignore my thoughts or deem them as ridiculous and insulting; be shunned from the family and their house; or be accused of needing to put “blame” on their side of the family for having autistic children of my own—and deeming me the angry mom.

To understand this better was to know that the very first words out of my mother-in-law’s mouth when Meghan was first diagnosed were “Well there isn’t anyone with autism in our side of the family AND WE HAVE SUCH BIG FAMILIES,” so with a raised eyebrow and a smirk--she blamed me. Oh, I could just feel the warmth, love and support permeating!!

So I left it up to my husband to say whatever he wanted to say and left it at that.

To this day not one word was spoken about this boy possibly having a disorder, at least not to me. But one day when I saw this boy’s mom a few years ago, she told me that she believed that he has some kind of “disorder”—she put it in her own safe and quick way. And I said with a definitive bounce in my words “Like Aperger's syndrome” and left it at that.

Not another word was spoken, but I think we were both relieved that we had the conversation and I think she was relieved that I hinted on it even if it never went any further.

The Power of Denial

I had a friend who also had a child with special needs. He has mental retardation and I also think autism, but that would be my interpretation. This friend did have her son evaluated by a neurological psychologist but she never shared the outcome.

Instead, she chose to “defend” her son by stating that the doctors were wrong and that there was nothing wrong with him; essentially, choosing the path of denial.

The problem was that she was wasting valuable time by not helping her son with therapies that could effectively work toward helping him actually overcome his disorder, or the mere presence of it.

I found this issue very hard to be her friend: She was always looking at my kids as if they were the ones with the problems and that her son was coming along (more than mine were, which was not true) and that her son would be fine. She would also be very hard on any friend that mentioned that something might be wrong with her son—which was evident; to the point that she would even end that friendship.

She was lying, denying, and putting her friendships at great risk. Her husband, on the other hand, was the levelheaded one and who not only believed that he and his wife needed to be proactive and help their son with necessary therapies and the like…but also wanted to be open with his friends about the truth--which is so important and a healthy thing to do. I felt sorry for him but at the same time I respected him for acknowledging his son’s issues and also wanting to help his wife deal with her suffering. Boy, did he have a full plate!

One of the saddest problems with her denying the truth about her son was that when we were all together, usually at her house, she would be very hard on her son—as if to say, you have to be more than you are…you’re not good enough; and all for appearances.

This is not putting your child’s best interest at work; it’s ruining his chances of a happier life, for him and for the entire family.

As a matter of fact, she was working against the one thing that she wanted most: a recovered child.

Can anyone relate to this common issue of denial, and want to share their thoughts?

More on Denial Here.