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Friday, May 3, 2013

Cupcake Wars

Whew, this morning kicked my booty. Aidan had an enormous, 45-minute meltdown over a cupcake. He demanded a cupcake that I had baked to share at Ella’s preschool picnic later today. We said Aidan could have one after school, when I pick the boys up early to go see their psychiatrist. That was not acceptable to Aidan. Picture a toddler having a tantrum. Only my boy is a 7 year-old first grader.

It’s so hard when your kids appear to be typically developing kids, but have issues in their brains that prevent them from acting like typically developing kids. Sometimes as a parent I even forget that my kids have special needs. I forget that one of the traits of having ADHD is having a developmental lag of about 3 to 4 years. So when you think of it that way, my 7 year-old was acting like a 3 year-old this morning, which is developmentally what we should expect. But when a big boy is throwing a hissy fit over a cupcake, it’s hard to remember that he is acting that way in part because of his disability.

I sometimes think about what it would be like to have a child who had a physical disability, instead of all the “invisible” ones my kids have. I know having a child with any type of special need is extraordinarily challenging. I think there must be a different set of challenges when you have a child with a physical disability. You probably never forget that your child has challenges, because you can see them. When you’re out in public, maybe strangers stare too long at your child. But if your child uses a wheel chair, no stranger would expect that your child should be walking. When your child looks “normal,” strangers stare at them because their behavior often doesn’t match society’s expectations of “appropriate.” People expect your kid with invisible disabilities to act “normal.” And sometimes I expect that too, because I forget how my children’s brains are different, their nervous systems are different, they experience the world differently than I do.

I have been attending a CHADD (Children and Adults with ADD) conference during the past couple weekends, hoping to gain some ideas about how to help our family function more smoothly, make sure I’m doing everything I can to help the kids, and just get some support for the challenges we face. It’s been a great experience. It’s just such a cool concept that there are support groups for any challenge anyone faces in this country. It really helps to know you’re not alone.

The people who lead the conference are parents who also have children with ADHD. So far, I haven’t learned anything new, but it’s been great to know that what we’re doing at home is a good way of doing things. Helping the kids stay organized, making things clear and concise, having ways to help them remember when to take a shower, when to take meds, things like that. The number one thing they keep saying at the conference is just that as parents you have to stay calm. I love this- they said you can’t let your child’s mood run the household. You have to rise above it and prevail as the person who is actually in charge and sets the tone for the family. That is so important for us.

Our boys have comorbid conditions, meaning that not only do they have ADHD, but they also have other diagnoses like anxiety, a mood disorder, Tourette Syndrome, etc. All of these diagnoses carry mood issues with them. It’s really easy to be run over by the horrible moods in our home. It’s really easy to just let the power of the anger and depression the boys feel crush me. I have to remind myself every day, sometimes every minute, to set the mood for my children. I have to stay calm (which is definitely not always possible).

When I used to work with people who had disabilities, it was easy to stay calm. I never yelled at them. I never showed frustration with them. I never lost my patience with them. Partly because it was my job to work with them, and then I got to go home and have a break from my stressful work. Now that I “work” with my kids who have disabilities every single day (and night), I lose my patience frequently. I yell sometimes. I get frustrated with them. I know that’s all normal parent behavior, but I wish I were better at being Mommy. I wish I had an eternal spring of patience.

Sometimes when I’m really exhausted and stressed and quick-tempered, I think about how I would treat my children if they were my clients at a job. I look at them as individuals who have a disability. I take myself out of my crazy life and try to act like a professional who is helping a child who has special needs.

When I do this, it really puts things in perspective for me. I’m able to see that Aidan’s behavior this morning was really just frustration being expressed in a disability-expected way. He was acting how I can expect him to act when he is frustrated and angry and doesn’t get his way. I have to change the way I deal with him in those moments, not the other way around. Because at this point he is not capable of changing how he reacts to disappointment. That’s a work in progress. That’s why he gets counseling, speech, OT…that’s why I have to be patient with him. Aidan is still learning, and his brain is still developing.

Sometimes I wonder what it’s like to have a child with a physical disability, because I wish I didn’t let myself forget that my kids do have disabilities. I wish sometimes that it was right in front of my face in a visible way so that I would be reminded that they are doing the best they can, and I have to do the same. 

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