Surviving the labeling process

All parents worry about their child’s development, but a growing number of parents are having their “red flags” confirmed by pediatricians. If you are one of these thousands of parents, you may be feeling scared, anxious and isolated. Is it autism? Is it Apraxia? Sensory Integration Disorder? What do those words even mean? Filtering through it all can be a nightmare. Here are a few tips that might help you get through it.

Keep a binder for the paperwork related to your child’s case. And keep a three hole punch at the ready! Paper work will be coming in quick, and you may not always know what it is. My pattern became receive it, read it, date it, punch it, binder it, dismiss it, revisit it when I could. Over the years the binder has endured several makeovers, but it primarily was divided into these parts; test data and results, CPSE, CSE and IEPs (notes from official school meetings and the legal documents outlining his services), notes from his therapists and/or teachers, and research and information from conferences that helped me understand what I could do.
Ask questions during the evaluations so you understand what is being evaluated and why, and be sure to write it down. When you take a two-year-old to a psychological examination, you will be emotional. In the rush to get siblings to babysitters and locate buildings, your stress will already be high. It is important in your folder to write down the name of the building, the person doing the evaluation and the purpose of the assessment. No matter how much you think you will remember this information, you most likely won’t. What you will remember is how it felt when your child struggled with a task, how s/he cried when you wouldn’t (couldn’t) help them and the reassuring tone of the test administrator.
Don’t label the problem too soon. I wanted a label so I could begin to find the solution, but that may have prevented further investigation. It drove my family nuts when therapists and psychiatrists would not label my son, but his case wasn’t clear cut. Eventually he was diagnosed with Apraxia, and we are actually still figuring the rest of it out. It is important to remember that the label doesn’t define the child anyhow, and you want to treat your child and the symptoms s/he presents, not the title. The label comes into play for the type of services schools can provide for the child. Eventually you will get a title of the problem, but don’t rush your therapists to make a decision unless there is a specific reason to do so.
Give yourself a break, and give others a break as well. Some family members couldn’t seem to talk to me about anything else but his therapy, their observations or suggestions to try. I didn’t want to keep talking about it, because there was so much more to him besides therapists. There was nothing they could say that I didn’t know first, better and had already done. Rather than waste my energy being sad and worried, I was constantly trying to move us forward. Then it would catch up to me, and the isolation, fear and exhaustion would hit me. Then I had to cry and talk about it, so I would give mixed signals to the people that cared about me. Then they would try and tell me he was going to “grow out of it” and that made me nuts! I quit my job to be home, and my husband didn’t see the in and out of the car seats three or four times a day to different therapies, the scheduling, the frustration and missed naps. In my mind he didn’t “get” how hard it all was, and it made the isolation seem greater. In his defense, he worked hard all day so I could stay home, and he didn’t see all that was going on, just like I couldn’t see what was going on with his day. I wish we just would have relaxed with each other and given each other a break! Parenting is hard enough without all the therapy and stress that comes along with it.
 While there is nothing simple about going through the diagnosing and therapy process, there are ways to make things easier. My favorite moments were at night when I let my son sleep with me. It was nice to see him be peaceful. He slept better with me, and I knew therapy would be more effective if he was well rested. You just have to find what works for you, and cut yourself a break!
Julia Garstecki is a freelance writer from Bemus Point, NY.