The latest news about the autism rates have brought us all to another collective sigh of horror, outrage and disbelief. We all knew that the current figures were off, we all knew that in reality, just in our own communities, counting the blogs, the books and the articles, so many more children were affected by a spectrum disorder than the often touted 1/150. When our son was diagnosed in 2008, I think the figures were closer to 1/250. It seemed astronomical even then. Now, 5 years on, that number has shot up considerably. Better diagnosis is blamed, well, forgive me, but 5 years ago we were still pretty much the odd ones out. We would go to the mall, to a fast food restaurant, to a party, and we, the parents of our son, would be the ones sweating, the ones calming, the ones holding onto our son so he didn’t run screaming a high-pitched scream through the throngs of people. Of course, eventually, we learned to manage with the behaviors, just not go, to stay close to home, to only be in situations that were controllable, but I digress. Luckily for us, he isn’t this kid anymore. We seemed to figure out the triggers for our son, and now thankfully for life, liberty and happiness, he is a totally different kid. Still a little out of control but not as sensory sparked, not as in your face, not as aggressive, not as uncontrollable; however, still not a kid I am taking to a nice restaurant. Although, to be honest, I am pretty sure a lot of parents could say that about their ‘typical’ kids.
Anyway, yes, those numbers, sending chatter across the universe. Did we do this to ourselves? Did something happen? Are we just seeing it clearer, diagnosing better? I see some autism professionals suggesting you still vaccinate, don’t change diet, live with it, learn to work with it, this is just better diagnosed, and I wonder, really? When I look around, I can see the phenomenon isn’t just limited to autism. Other things are happening to our kids, other rapid changes, other things that just are not quite right. Did we suddenly start adapting faster to our environments than we ever have before or is something seriously wrong with either the way we are raising our kids, or the food chain, or both of those things and more (BPAs, Coal Ash etc.) – I just don’t know, and until someone gives me an answer that makes sense, I think I will choose to err on the side of caution thanks!
I have been looking from the inside out now for many years, and it really started when we began our journey to become parents. A number of firsts suddenly meant, I went from a fairly normal living, smoking, going out, having fun, starving myself to be thin, kind of late 20’s girl to who I became today. Gradually as we tried to build our family, we became the odd-men out if you will. Now, for whatever reason you decide to think, I have a foot in many ‘groups and statistics.’ Originally we fell into the rates of infertility rising group, then we became members of the ‘adopting on the rise’ group, then we joined the ‘parents of a child with special needs group’ and we are the proud but also card-carrying members of the ‘culturally diverse family or parent’s raising children of a different culture/color’ group.
Along with adoption, comes other challenges – see “puberty before age 10” or the statistics I have written about before in regards to the mental challenges associated with adoption from a child perspective. I know that my children will always belong partly to another Mother. I have now accepted that – or at least I think I have, it took a long time, and part of my heart had to die to get there, but accept it I have, simply because I love my children. We now live the other classic adage, “if you love someone set them free, if they come back …” We are in the process of getting ready to do birth mother searches. Most families don’t have to question this, they have their children and spend the rest of their lives comparing them to Uncle Jack, or looking like Aunt Stephanie, or singing so well just like my dad, or my aunt, mother, brother…. but in our house that doesn’t happen. Our son’s drawing talent is becoming very evident and we wonder, who that came from, is one of his birth parents, aunts, uncles, an artist? Do they have his amazing insight? Talent? Gifts? Or my daughter, struggling to come into her own, having many things she does well, but trying to find the thing she does great! One might say, and we do, that our kids are full of untapped, unknown potential which is pretty exciting, but to gain that perspective we have had many hurdles and challenges to find a positive spin on the unknown, the questions, the grief of losing what you can’t remember you had. I know other ‘typical’ families can have this too, I don’t think it’s only adoptive families, but for us, the question is never answered, unless we are able to find the birth families, and then who knows what we are opening up too. We may discover personalities that match, talents that are family owned, but at what cost, what other feelings, emotions are going to be brought out, will I be able to cope? I have to, but will I? I know my thoughts on the media view of adoption, it seems to be mocked, Angelina is touted as some kind of freak, not an amazing person who brought a family together. She is ridiculed, and made jokes of, but so many families are built on adoption and this alone brings its own challenges. I don’t say this to differentiate, to say we have it harder, or better, I say this only because we are different, we are once again part of a statistic. In general, ‘typical’ families can go along without wondering, pondering, thinking… what would that be like I wonder?
So in the end, I have to admit our life hasn’t been the normal, leave home, career, wedding, family, retirement path that most of us envision when we are growing up. You don’t imagine struggling through miscarriage, after miscarriage to be told it’s not going to ever go the way you want it too, those odds are too small, just move on. So we did, we chose adoption to build our family. Interestingly, we chose to bypass some European countries knowing that baby homes and deprivation carried their own distinct risk, when the chance to adopt from a non-European country chose us, we went along happily for the ride. This led us to where we are now. Sitting in my little sun-room typing on my computer while my kids watch the Disney channel in our little living room. Are we normal? I am not sure anymore what that even is, except for the famous line “normal in our house is just a setting on the drier!” We are happy I know that, but we are isolated. We celebrate firsts in this house harder than most I imagine, we choose to celebrate little achievements and no longer push for the big! Both the kids are doing well in their new school, but to pay for it I work 40 hours a week, from home so I can be here with them, but still 40 hours on the clock. So the compromises are many but the rewards are finally coming fast, that makes the trade-off worth it – right? Do I sometimes wish that those 6 figures we have spent were still in our bank account, oh hell yes. Do I wish I was in my bigger house, oblivious to the outside community angst and rising rates of autism, precocious puberty, infertility rates, and who the hell knows what else, well hell yes again. Who wouldn’t want to be oblivious? But that isn’t where we are at!
We are doing better than most. We have been successful for the most part in dragging our son kicking and screaming to where we are now. It took a lot of work on his part, and it isn’t done yet, but at least now, he is wiling to put in the work. For all those kids out there who will never recover from autism or their developmental challenges, I say to the parents, I know you love these children, I appreciate the hard work you put in caring for your child/children, the hours lost in sleep and the $$ lost in therapies. I know you will die for these kids, I know you want answers, but where do we go from here? Just how do we change these figures without anyone really in the position that matters, doing anything about it? Will it only begin to change as it affects the budgets, then will people start thinking out loud? or as the families who judge autism and developmental delays on bad parenting discover it in their own children? or as the doctors who think parents who choose special diets are crazy, find it in more and more of their patients or their own children? As the questions become louder and the answers more obviously incorrect? Will it be as more special needs classes and teachers need to be hired, more adult carers, more community help, more medicare/medicaid?
I know for us, we are tired of being a statistic, we want to blend in, we want to be ‘normal,’ how do we make that happen? Oh wait, if the autism rates continue to rise, we will be the ‘new’ normal… time is on our side, time is truly on our side.
Not just autism, we should be worrying about. New York Times, Puberty Before 10.