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Support for the Asking

When the Child Find board approved further testing to evaluate my son, my family and I were en route to Maui for my wife's sister's wedding.

While there, it often felt like I was alone in paradise. The concerns about my son weren't a topic for group discussion. My wife and I didn't want to worry or upset the rest of the family, as we still didn't know exactly what we were dealing with, and didn't want to distract from my sister-in-law's great joy. The trip was taxing on my son, too. He appeared to regress in communication with the extended family. I think they noticed, but nothing was said.

As I watched my son frolic in the surf, he was doing a lot of hand flapping, something I'd never noticed before. Was this just normal excitement or more evidence of a serious condition?

I ended each day with a stiff drink, which I would strongly NOT recommend. And, still on East Coast time, I would wake in the middle of the night and pray, which helped.

As soon as we returned, I contacted Child Find to schedule appointments for my son's evaluation, which Fairfax County stipulates must be completed within 90 days of the initial appointment. Depending on what you're processing, 90 days can fly by or drag on forever. With my Maui introspection under my belt, I'd come to the realization that I certainly needed to do some serious processing.

I reached out to one of my oldest, closest friends. He and his partner had been addressing the same issues with her three-year-old son, who was going through a similar evaluation process in D.C. We had a long heart-to-heart talk that was cathartic for me. In the end, we were both optimistic, reassuring each other that our kids would be able to mainstream into the "normal" K-12 education without too much added drama.

I began opening up to some friends at work about my son. Some told me they had worked with Child Find to address issues like fine motor skills and speech therapy with their children and had been very pleased with the results. That was a relief to hear.

I also began sharing with my mother and two sisters what was happening. One of my sisters reminded me that her oldest boy (now 17 and having nearly completed an associate's degree at a community college), was a late talker and had gone through a year's worth of speech therapy.

I'd finally established my much-needed personal support network and didn't feel nearly as alone.

What I found surprising then, and even moreso since I started guest blogging, is just how many friends, colleagues and acquaintances have children with special needs. It may have been the biggest motivation for me to start writing about my experience. In most cases, the child's condition is mild or manageable, but in some cases, it's more serious or severe. So, why don't we routinely share and talk with people we know well or at least talk to on a frequent or daily basis?

Eventually, perhaps due to my self-absorption, I couldn't help but talk about it. I thought I'd explode if I didn't. Talking helped me allay my fears. But why is silence the norm? I realize, and appreciate deeply, people's privacy issues. And I know some folks don't want to bother or burden their colleagues and communities with their "troubles." But is some of the silence due to a fear of stigma, a holdover from earlier generations? I'm guessing there has to be some of that. And subconsciously, it's probably why I didn't start talking earlier, too, I'm embarrassed to admit.

[Previous posts in this guest blog series: "When Something's Not Quite Right" (10/23/07); "Questions Unanswered" (10/30/07)]

Next Week: Domestic Discord

By Mike Snyder |  November 6, 2007; 7:10 AM ET  | Category:  Child Development
Previous: Sleep. It Does a Kid Good | Next: Hovering's Not Always Bad

Comments


Mike, I am glad your finally talking about it. I find I can only talk so much about it and then I burst. It seems as if my mother wants to talk about it every time we talk and that is annoying. I have tried to tell her that but she gets all offended. On the hand flapping thing, if your son was never flapping before the age of 4, it is highly unlikely he will develop the behavior later on. My daughter was diagnosed close to three with high functioning autism. She was in speech therapy since a little over 2 years of age. She has NEVER had singular focus or stimming behaviors. She has infrequent eye contact, speech delay and is only parallel playing right now. But one day I noticed (around age 3 1/2) watching a tv program and twisting her hands around. I immediately thought holy c%&p, she is flapping. It turned out she was immediating a TV show where the character was doing abra cadabra. So I would relax for now about the stimming behaviors. It isn't likely that he will just pick that up at age 4. Even if he is autistic, he seems extremely mild like my kid. Hope your hanging in there. I love this series. It is so necessary.

Posted by: foamgnome | November 6, 2007 7:33 AM | Report abuse

Why is silence the norm? I think it's shame. Fear of being labeled as different (or even as a parent of a "different" kid). Fear that people will start pitying you or treating you differently because they think you've got more than you can bear going on in your life.

But Mike, it's so, so much better now than it was. The support services are there, out in the open, and easy to find. Instead of having to dig and question and reveal what's going on to a group of people in order to find out who you should really be talking with, as you had to do 20-30 years ago, it's easy to figure it out. Teachers are more well-informed and educated on how to help and what to look for, and so are doctors.

Posted by: WorkingMomX | November 6, 2007 8:13 AM | Report abuse

My son has high functioning autism (better known as Asperger's). Long story short, he was gifted in kindergarten, had lots of enrichment, finally diagnosed in 6th grade but we clearly knew there were issues sooner. I am glad to see that you are reaching out to your family but it will also help to read about this and reach out to other parents of children with similar issues. The only way for the stigma of hidden disabilities to go away is for people whose kids have these issues to speak out. If you haven't read any of Tony Attwood's stuff, this might be a good place to start. Good luck - in some ways the process you've described is kind of the worst part, once you have a better idea of what is going on, the sooner you can come up with a plan to address your child's needs. Hang in there.

Posted by: AS mom | November 6, 2007 8:25 AM | Report abuse

I wonder if the silence is also a combination of "if you say it outloud it's real" - so we try to keep quiet as long as possible in the (subconscious?) hope that it might go away, fear of stigma, and fear of being part of the "overdiagnosing our kids" phenomenon...

Posted by: Sarah | November 6, 2007 8:34 AM | Report abuse

I am so sick of all you parents with your special needs children. They don't have this or that. They're just slow. Get over it. Yes, that's right. You brilliant yuppies managed to have slow children. Ahhh, so sad.

Posted by: Get A Life | November 6, 2007 10:30 AM | Report abuse

Well I think you did the right thing in not bringing it up during the wedding festivities.

But why not a stiff drink? Aren't situations like that why stiff drinks were invesnted?

Posted by: Liz D | November 6, 2007 1:23 PM | Report abuse

Just popping in to say I am still really enjoying the series.

To Get A Life, well, I don't think that's true, but even if it were I guess I'd prefer slowness to trolling the Internet looking for people to tell off! Although I think you may have proven it's possible for both to coexist, since "slow" is such an old-fashioned catchall phrase for all these things we are learning about now - and learning to treat.

Posted by: shandra_lemarath | November 6, 2007 2:19 PM | Report abuse

Sort of OT: Take a look at today's On Balance blog. These two blogs sort of go hand in hand.

To Get A Life:

Why don't you... get a life?

Posted by: PakeMommy | November 6, 2007 2:44 PM | Report abuse

Sometimes I think the holding back information like this, and being weary of talking about it happens because of people like "Get a Life." We've seen it a million times in both this blog and On Balance, and I'm sure everyone has their own examples of opening up about something personal and then getting an inapropriate and often hurtful response. I wish so much people were more respectful - that would help more than a little. But in the meantime, I think we're all a bit guarded just to ensure our vulnerable spots don't get abused.
Thank you for sharing your story and opening up to this group.

Posted by: Mama | November 6, 2007 2:57 PM | Report abuse

Talking and opening up does help you realize your support group. It also identifies you as a future source of support for others who need help. So be ready for the day when someone reaches out to you for help.
Oh, and let's not feed the troll, tempting as that may be.

Posted by: AngelaA | November 6, 2007 3:16 PM | Report abuse

I think many parents need to take a deep breath and realize many of these "delayed" children are just fine. I can say this, because I have spent over a year and a half of unneccesary heartache and anguish regarding my three and a half year old son who started talking very choppily a few months ago. It is really too long to go into everything, but after the initital Anne Arundle Infants & Toddlers evaluation, I started noticing how their "tests" were very easy to fail. Children are not robots, yet the evaluators would make negative marks if my son didn't do exactly as they said he was supposed to do. They completely overlooked whatever signs of intelligence he showed outside of their parameters. A few months ago, we hired a private speech teacher to come to the house and he is doing great. Frankly, I think he was going to get there on his own, but pressures are different today in raising children. Also, keep in mind that the evaluators are employed by the state. I used to have a state job and I know that you have to justify your existence to keep funding coming for your job/position. I would be willing to bet that every child who gets referred to these programs winds up being lassod in. It happened to us. Now he is talking, but because they aren't complete sentences, a person from the county recently told me he could still use "intervention."

Posted by: annapolismom | November 6, 2007 3:26 PM | Report abuse

To Annapolismom, it may be the case that your child didn't need intervention; I wouldn't know. However, a child that doesn't need intervention but doesn't get it will still be fine, whereas a child that needs it but doesn't get it may not be. Early intervention can make all the difference in a child's life. So I think it is better to err on the side of getting an evaluation rather than letting things slide and hoping that your child will end up ok without it.

Posted by: Raia | November 6, 2007 4:34 PM | Report abuse

None of my family was as harsh as "Get a Life", but some of them weren't helpful, understanding, or supportive.

DH and I found much more understanding and support among the other families in our son's program.

The core of this group have had picnics and events where all our kids, Aspies, HFA, and neurotypical siblings, got together and got to know each other. The biggest blessing was probably for the parents though. When one's child has an "invisible" disability, one can be the target of an awful lot of criticism while out in public. Among our group, everyone understood when a kid had a meltdown, and nobody thought, let alone said, anything about poor parenting, lack of discipline, or any of the other nastiness that we've all experienced. Every mom and dad had had the same experience with their own kid, and we just tried to help each other out. So if "Amy" was having the meltdown this time, while "Amy's" mom was calming her, one of the other parents would offer to help "Amy's" little brother get another hot dog.

It's sooooo good to have friends who really get it.

Posted by: Sue | November 6, 2007 6:30 PM | Report abuse

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