Mar

4

Featured Blogger Tuesday

Posted by preciouschild

March 4, 2008 |

Many apologies for falling off the radar! All of yesterday’s “free” time was spent getting ready for our tax appointment on Friday. Just one of those life things.

Today’s featured blogger interview is Friday Playdate! I’m so excited. I’ve been blogging over at Sparks and Butterflies for years, and Susan’s been one of my favorite reads. In fact I consider her up there as one of the leading bloggers. I was very excited when she said Yes!

susan.jpg

What is your name and where do you live?

Susan Wagner. I live in Oklahoma City.

Your website?

I have TWO, actually: Friday Playdate, which is my personal blog, and Friday Style which is a fashion and style blog.

Your kids’ names, ages, and disabilities?

I have two sons; Henry is seven and a half, and Charlie is five and a half (those HALVES are SO important, you know). Henry has been diagnosed with ADHD, NonVerbal Learning Disability, Sensory Integrative Dysfunction, and anxiety.

Do you blog about their issues? What do you personally get out of that?

I do write about Henry’s issues, although I like to think that what I write isn’t so much about Henry as it is about our life as a family, and particularly my life as as mother. I started blogging in February of 2005, quite literally as we were beginning the long process of having Henry diagnosed; I felt isolated and overwhelmed and I just needed some place to put all of those feelings.

Through Friday Playdate, I met a whole network of other parents, many of whom had kids just like Henry, and all of whom understood how difficult it was to be home full time with small children. As we moved forward through the diagnostic process — which included changing schools four times in four years and dragging Henry to half a dozen different specialists and experimenting with various medications — the writing became a kind of therapy for me, both because it was a way to sort out what we were going through and because my wonderful wonderful readers offered support and feedback and just general kindness.

What does a “typical” day consist of for you and your family?

This year, for the first time, both of my sons are in school full time, at the SAME school, which has changed our lives, literally. On a typical day, then, I get up at 5:00, get myself showered and dressed, make lunches, get the boys up and dressed and fed and medicated, and run everyone to school. For the seven hours that they are in school, I work, and then we do homework and read and play.

Pretty dull, which is really wonderful.

This is the first year that Henry hasn’t struggled to stay at school all day; this is also the first year that I have been able to commit to any kind of long-term work, without having to worry that at any moment I will have to drop everything and go scrape him up off the floor at school. Our days are pretty simple, because just being at school all day takes a lot out of him, so we don’t have a lot of playdates or after school activities. But honestly, I will trade those things — and I have traded them — for peaceful time with my kids.

How have their disabilities affected the children specifically? And the family as a whole?

Henry struggles socially; he misses cues, for example. He wears his uniform pants hiked nearly to his armpits and his polo shirt buttoned ALL the way up; he has to have the hood on his coat up over his head all the time. He’s in first grade this year, and for the first time, the other kids have started to comment a little bit on his oddities. But he has lots of friends and he’s doing well academically, and we’re hopeful that because he is in a very small school, he will always be part of the group, not an outsider. But we’ll see.

Henry also has anxiety issues, and he is easily overstimulated. He’s still prone to catastrophic meltdowns — he will have a tantrum, like a toddler has, but with the language and physical power of a child who is nearly eight. We’re trying hard right now to balance helping him learn to manage the overstimulation and just making choices for him about where he goes and what he does, to avoid situations where he is overstimulated. And that really does change the way our family life goes.

Ironically, I worry more about my younger son than I do about Henry, probably because my husband and I spend so much time and energy strategizing how to help Henry. Charlie is very easy going and has an incredibly kind heart; he understands, even at five, that Henry is different from other kids, and that sometimes he struggles just to be. I don’t want Charlie to feel neglected, and I worry sometimes that he does, because Henry takes so much time and energy.

How have their disabilities affected you as a person and as a mother?

One day recently, Charlie was playing outside, and he fell. He came in the house, with his little face all frowny, trying so hard not to cry; when he saw me he burst into tears and said, “Mama, I hit my head.” He sat in my lap, with his arms around my neck and his little face pressed up against me and sobbed for the longest time. He was so sad and so sweet, and it was such a contrast to Henry, who comes completely unglued when he gets hurt; he screams and yells and demands that someone help him but refuses to do what you ask or to let you touch him.

And I found myself wondering what it would have been like to have two children like Charlie.

Having one child who is completely neurotypical and one who is not has forced me to reconsider virtually everything I expected motherhood to be. Henry is so smart and engaging and funny, and I wouldn’t trade him for the world, but he is a tough child sometimes. And Charlie is kind and gentle but he can also be whiny and demanding, especially when he’s feeling overlooked. It’s hard to explain — it isn’t that I wish them any different, but I have moments when I wonder what it would be like NOT to have this disability in our house.

But I also can’t imagine Henry any different, so there is that.

How has this affected me? I feel more guilty than I ever thought I would, I am more exhausted than I ever imagined I could be, and I am happier than I ever expected to be.

What did you do right? What do you wish you had done differently?

I think the one thing my husband and I have universally felt we did right was establish a consistent schedule, including clear rules about what is and is not acceptable behavior. Henry needs consistency, both in the routine of his day and in the things he is asked to do. Fortunately, we are people of routine in our house, and we started out, when Henry was a baby, with a consistent schedule, which turns out to be the best possible thing for him. And we have always been clear, with both kids, about how we expect them to behave — say please and thank you, use nice words, share. I think that consistency has been huge for Henry — and for Charlie, too.

When I think about what we should have done differently, I can come up with both a million things and nothing at all. I wish Henry hadn’t changed schools four times in four years, but four years ago, we had no idea of the extent of his disability or of what exactly he needed. I think each choice we have made has been one we have considered thoroughly and carefully, and we have weighed all the consequences and benefits of each therapy and medication and strategy. I don’t really know what we could have done differently.

What do you want other parents fighting the same fight to know?

Trust your instincts — you know your child better than anyone else, and you are his advocate. Understand that there is a difference between making excuses and offering explanations — an excuse just lets your child off the hook, while an explanation helps other people to understand and, hopefully, sympathize with you and your child. Stand your ground — if your child needs special accommodations, either at school or on vacation or in your home, don’t let anyone talk you out of that.

For kids like my son, half of the dilemma isn’t his disability but the way the world is organized; tweaking things, like where he sits in school or what he wears to bed, makes a huge difference for him. And I know that other people think I’m one of those helicopter parents, and to an extent I probably am, but that’s my job right now, and I’m not going to quit just because I get criticized. This isn’t about me, after all, it’s about Henry and helping him to be the happiest, most successful Henry he can be.

Anything you else you wish to share?

I really think, in the end, that the only way to survive parenting is to keep your sense of humor. Anything is funny if you look at it right. I promise.

Thank you so very much for doing this Susan. I know I got really excited - but that’s OK! Everyone, go visit Susan!


Comments

4 Comments so far

  1. Featured Blogger Tuesday at adhd advice.net on March 4, 2008 11:21 am

    […] the rest of this post and contact the author: here Filed under Uncategorized […]

  2. ADHD Report» Blog Archive » Featured Blogger Tuesday on March 4, 2008 12:10 pm

    […] guppylovessharkReally interesting read I found today:This year, for the first time, both of my sons are in school full time, at the SAME school, which has changed our lives, literally. On a typical day, then, I get up at 5:00, get myself showered and dressed, make lunches, get the boys up … […]

  3. Featured Blogger Tuesday on March 5, 2008 3:29 am

    […] preciouschild had a pretty good blog post. Definitely worth your time. Here is a small excerpt:I think each choice we have made has been one we have considered thoroughly and carefully, and we have weighed all the consequences and benefits of each therapy and medication and strategy. I don’t really know what we could have done … […]

  4. Friday Playdate » petty larceny and teenage hi-jinks on March 6, 2008 10:29 pm

    […] that Michelle interviewed me this week for her new site, Special Needs Parent. The interview is here — come on over and see how many times I can use the word “consistent” in the SAME […]

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