Monday, April 8, 2019

Special Needs Families


We had one bad t-ball practice with Love Bug. It was the first outdoor practice near a playground. Love Bug wanted to play on the playground and I told him he could after practice. He wanted to know how long practice was going to last and when I couldn’t give him an acceptable answer, because he has no concept of time, he spiraled out of control. So, I found a way to help him. I set an alarm on my phone. He practices for 5 minutes and then he takes a 5 minute break. At practice last week, he only asked me one time when the alarm was going to go off. He took one long, unsanctioned break, but he came back to practice easily and participated as much as the other restless players. I was relieved to know my plan worked. Mostly. When I was talking with his coach about my new approach, I got a little teary-eyed because it’s hard watching your kid struggle. It’s even harder when that cute little imp is kicking you and throwing sticks at you. The coach rubber-stamped my idea and another father, who was on the periphery listening to our conversation, chimed in that “it’s just kids.” Meaning, all kids have issues with something or another. I smiled at him kindly, but inside I was screaming, “You don’t get it!” Yes, all kids have their different personalities and they handle things differently. I am not talking about varying personalities. I am talking about a child who is not processing things within the range of clinically normal. The mobile therapist told me a few weeks ago that he isn’t 100% sold on the ASD diagnosis, like the early intervention therapist. He definitely sees ADHD and ODD but he thinks, with structure, Love Bug can manage as well as any child his age. The school setting might be the ultimate test. Love Bug will be evaluated by the school this week during kindergarten registration. We have a whole slew of mental health professionals working with and evaluating Love Bug. It’s not that I don’t recognize all children have different personalities, but by telling me that, the father of Love Bug’s teammate nullified our very real struggles. Somehow, the things that we have to work to overcome feel diminished and marginalized when they are readily brushed aside under the “all kids” umbrella. I know why the father said what he did, he was trying to make me feel better. He didn’t want me to feel bad that my kid might stick out in some way. But, his words had the opposite effect. Because, to ignore our challenges means ignoring our successes. Love Bug has been doing better at practice, not because of his personality, but because we have been doing a lot of behind-the-scenes talking and brainstorming about how to make it through that hour twice a week. It doesn’t make me feel better to hear that “all kids” have a bad day or a different attitude because, while that is true, not all kids have a hard time processing unstructured time. Not all kids require the level of intervention like Love Bug. I’m not trying to make my little boy stand out, but I am trying to realistically help him function in an unforgiving world. Please, don’t try to gloss over our struggles, rather celebrate our successes with us.     

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3 comments:

  1. It's hard when people judge us or our efforts when they really don't understand the specific situation. It sounds like you are a really tuned-in mama who is doing a great job helping her son navigate his world and make it understandable and safe for him. I celebrate your success!

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  2. Yes! What Lori said. I love the timer/alarm idea. You are doing great. But it does sound really tough at times, too.

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  3. I get annoyed by those types of comments too. It feels dismissive and we're dealing with our own outside the box issues with our oldest. I third Lori - you seem in tune with your son and are doing a great job!

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