Friday, February 11, 2011
Please bear with me as I climb back in the saddle here... for some reason lately I haven't been able to get my blog on! I have come here many times full of angst and thinking I will write something new but finding sometimes it's too personal or it would be too hurtful for specific people to read whether it was really about them or cuts so close to their situation but still this isn't about pointing the finger! My Mother has always said "be careful pointing your finger because you still have 4 pointing back at you" My Momma's wise that way!
Anyway the current bee in my bonnet is in regards to how parents of special needs children sometimes bicker among themselves about their children. I see this happen more often on email lists because I think when you aren't looking into someone's eyes you can't really know what they mean and feel when they say something. You also can't see how much you have hurt them when you are careless or unnecessarily cruel in your posts.
I have a group of friends who I have written about before my "autism moms" or "sistamommychicks" as we call ourselves. We look into each other's eyes on a semi frequent basis and I think we are all very real about our kids... we aren't in denial and none of us are wallowers(spell check tells me that isn't a work but spell check needs to hang out with some folks I know and they would add it right in!). We are very real about our kids... real about our frustration, real about our heartbreak, real about the potential that our kids have that can be so hard to access, real about how most staffing agencies suck, real about how tired we are most days. We laugh together, cry together, grieve together... whatever comes we are in it together!
My child also has a genetic syndrome called 22Q or Velocardiofacial Syndrome or DiGeorge ( www.vcfsef.org has some great information for anyone interested in this syndrome and how it affects our kids) . At any rate we can't even decide what to call it and some will bicker about that too! It comes down to this black and white for me... call it monkey butt for all I care but my kid is missing a piece of her 22nd chromosome and it's not a good thing!
Recently there was a dogpile on a poor mom on the list who remarked that her child was "mild" and then gave documentation as to her using the term "mild". Alot of kids with 22Q have heart defects requiring complicated surgeries, immune issues requiring treatment and a limited way of life, cleft palates and lips, significant learning issues and mental retardation as well as a myriad of other medical complications with all kinds of body systems. Some of our kids aren't able to speak until surgical interventions take place and many years of speech therapy. There are LOTS of really scary things that can happen with our kids but at the same time some kids have very small issues. This lady was relating that she had great hope for her child and felt very blessed that he did not have heart issues, didn't have a cleft palate, his immune system was strong and so far (he's a preschooler) his development only lags a little bit behind his peers.
Imagine my surprise and I am SURE this lady's surprise when the next day there were about 20 emails saying she was in denial and unrealistic and there were probably all sorts of things wrong with her child she didn't know about because her doctor had to be incompetent to have not found anything wrong etc etc. Even a post that basically in a few years she would be rethinking that term "mild". WHOA! Really? Our kids are struggling, we are exhausted, we are heartbroken, we fight every day with the school, the world, medical institutions, governmental agencies etc etc and we are going to muster up energy to fight with EACH OTHER?? Bitter much?
I have encountered the mothers that are in serious denial about 22Q and about autism. The moms that tell you that even though their child has 22Q they will be the one child in the history of 22Q that doesn't have learning disabilities or any health issues. The moms that get an autism diagnosis when their child is 2 and pull out all the stops and chase every bit of snake oil they can find because their goal is to have their child normal by kindergarten. I have seen moms who have children that are so glaringly obviously on the autism spectrum but completely swear they see nothing amiss with their child (you know this same child that just licked the floor, opened all the kitchen cabinets in someone else's kitchen, spent 5 minutes spinning in the middle of a group of kids, takes direction nor correction from anyone, is unsuccessful in every social situation and has not one single friend... yeah that kid!) I have SEEN denial people I know what it looks like.
At any rate... let's be honest here, there are no other mothers on the planet that can get it like we do. No one who hasn't walked in our shoes has the first clue what our lives are like. Can't we just use that same passion and energy to hold and comfort one another? Can't we just bite our tongues and not say the first thing that comes to mind? Can't we just give each other the benefit of the doubt and be kind? We deal with enough harsh realities every single day, do we really have to stomp out every bit of optimism other moms have? I personally NEED that optimism to get through the day. There are days when I think AWFUL things about how much easier life would be without autism and 22Q in my life (just for a second or two and if we are honest we all go to that dark place now and then!). I need my friend who has two boys with autism and is currently struggling mightily with one of them having behaviors that are making family life nigh impossible to say things like "Hmmm a coyote was spotted in my neighborhood... perhaps that would make a good therapy dog for J?" I need that sort of humor to get through the day!
So here it is... be kind to one another... I think a great man said that once... it's written in a major best seller at least!