Sometimes, the best advice you receive is when you are just listening in on other parents at your kid's adaptive gym class (or OT waiting room, or social skills lobby, you name it).
When we first received our son's diagnosis and started looking for resources, we were told by one reputable organization that we would never qualify. We mistakenly thought this was because of our financial situation since both my husband and I worked full-time. Therefore, we struck out on our own.
Our public school did an excellent job with in-school services, but we needed more: outside speech therapy, adaptive gymnastics, pre-school and then after school care that was sensitive to our son's needs.
At one point, we enrolled our son in a study through the University of Arizona and they had us fill out an evaluation questionnaire. Based on our feedback, they said his symptoms weren't serious enough to participate. We were dumfounded. There were meltdowns, and sleep problems, and overstimulation issues, and transition issues, and food issues. How could it possibly be that he didn't qualify? And then I overheard the other parents at our son's adaptive gymnastics class and it opened my eyes.
"Get out of your own way." Actually, what they said was "make it sound worse than it is" and I was horrified . . . isn't that faking? But as they talked, and I reflected on what they were saying, I realized that we had been faking all along.
As parents, we were tied to wanting to be good and competent parents, and to show our child in his best possible light. So not only did we learn to minimalize, we also normalized.
So many screening questions are related to how your child's behaviors interfere with your life - with your well-being. Can you take him to parties or out in public? Yes. Then it doesn't affect your life. Stops there.
We can take him to parties or out in public because we always travel together, or with grandparents, so there is back-up. We are flexible about leaving asap when a meltdown comes on. Travelling in pairs or groups means that one of us can chase our son around a parking lot and let him watch traffic when he can't sit in the restaurant with family anymore. We purchase last minute earplugs when all of a sudden there is a sound we didn't expect to trigger him. We carry all of his own food so he will eat something, and we make sure we have Lactaid for milk products, or ibuprofen for that childhood migraine that comes out of nowhere. These are scenarios every parent must be ready to handle if they happen, but for us, it is more like when.
There are numerous other examples of things in each of our lives that we have normalized to the point that we don't even think of them as interfering or inconvenient - they just are. And how can they interfere with our lives or well-being if they just are?
The message is, we know how to accept and accommodate most of the issues that come along. We try to be well prepared. We work to stay calm and keep a straight face in situations where stares and whispers cut at us, all while our hearts are bursting for the uncontrollable distress our child is in and how it might be impossible to console them. However, when advocating for our kids and the services they need, we have to be able to acknowledge how hard it is. We need to get out of our own way and recognize that just because we might be able to do it on our own, we don't need to.
There is a reason resources exist and when we approach our needs as a family and the needs of our children from a place that isn't normalized, we can receive help that can really make a difference.
The gym-talk made me a more honest parent and a more honest partner. I was able to get out of my own way and secure resources and support that continue to make a great difference in our son's development.
Score 1 for eavesdropping!
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