Sunday, February 8, 2009
One frustrating and confusing part of all this “diagnosis & intervention” business is actually dealing with other people. And by other people I mean EVERYONE… strangers, friends and even family members. Now don’t get me wrong… I love my family and friends… and strangers are, well…strangers. But when we started to notice issues with Jonathan’s development, I had a very difficult time deciding how to broach the topic with friends and family. Who do you tell? Who don’t you tell? What should my expectations be? And how do I defend… yes defend… our decisions for Jonathan?
Many moms I know who have a child with a developmental delay run into this problem. The moms on the Speech Delays board run into these issues all the time… It is a constant source of postings! And I have a few friends who have children with developmental delays who also deal with this… and we all grouse about it! After much thought and debate, I have narrowed down these reactions to the following:
These are the friends and family who think you are nuts. They tend to say things like “oh, he is just a late bloomer” or “you are just looking for trouble”. They will tell you stories like about their great Uncle Fred who didn’t talk until he was 12 and look at him now…. He is a nuclear physicist. Or about how Einstein didn’t talk until he was three. They tend to believe you are an overprotective, paranoid mom who has watched too many episodes of Oprah and reads way too much into those milestone charts. They will try and tell you to stop worrying, give it some time, and your babe will just grow out of it. They will make comparisons between your child and their child…. Say things like “oh, well, I worried that little Suzy was behind when she wasn’t walking at a year, but then she was a toddling nightmare at 13 months” or “you know, little Mark doesn’t say mommy either” (even though little Mark has a vocab of 20 words which he uses VERY appropriately).
Maybe these folks are trying to be helpful. You know, downplay your worries just in case you really are an overprotective, paranoid mom. Or maybe they don’t know what to say… they wanna make you feel better, but don’t have the words. Or maybe they are just stupid and insensitive.
I ran into a LOT of Doubters when we first had Jonathan tested. To lay eyes, he does look just fine. A normal happy boy. And he was quite young, so I was prepared for it… one does not normally hear of a 16 month old in speech therapy! Typically, my response has been something like this: “Oh, I HOPE so! Wouldn’t it be GREAT if that is the case??? But hey, it can’t hurt to start early… just in case”… and I smile. Because all of that is true. I would LOVE to be wrong. In fact, there is nothing I would like more…
Overall, these folks are great. They tend to have a child with special needs, or have some experience in the area. They believe you, and want to help. Occasionally the advice is wrong, or inappropriate… but their hearts are in the right place. And very occasionally there are a few of these people who don’t really understand your situation… but try… usually it goes like this : “Oh, we had something like that going on with our youngest. He didn’t know his ABCs until he was 5! We were so worried. But with extra work and tutoring, we got past it.”. I just smile and nod. What else can you do?
These folks don’t wanna hear about it, don’t wanna talk about it, and tend to phase out of your life rather quickly. I am not sure if it is because they think it is catching, or they just don’t have the energy to deal with someone else’s problems. And that is fine… I certainly don’t need THAT negative energy around.
So what does one do? When we first realized Jonathan has issues, we did keep it fairly close to the breast. I mentioned it to my mother… and she had the Doubter reaction. I was looking for trouble, her grandson is perfect…. Actually, a great reaction for a Grandma! But, as time has gone on I see that she now sees what we see and is supportive. Still, therapy talk is still a bit taboo. We have friends who are very supportive, others who I am sure think we are nuts. We “came out” slowly. I think we needed to see how all of this was gonna play out. Now I am quite open about it. Still, it is difficult. I started taking Jonathan to ECFE classes this winter, and when we do the parent class time, I feel awkward. Those mommies talk about issues that we are not even close to worrying about… getting rid of the passy, beginning toilet training, etc…. I am so not even in that ZIPCODE. So it gets a little lonely.