Kid Party

I end up talking a lot from my perspective in this blog.  I kind of view myself as a series of sensors in which we can sort of measure various characteristics of our family life since I am chief operating officer of the Morphet Homestead.  When I view past posts - I am sensing a bit of an evolution about myself.

Recently, Parade magazine had an article about Kevin Powers, an author who wrote of his experiences as a veteran of the Iraq War, entitled  "The Yellow Birds". As I read through the article, I was struck by an idea that I could relate to: re-entry into the "real" world. While I have no experience nor true understanding of what it means to serve the military in time of war, I was able to understand this feeling of different worlds. Mr. Powers writes about these ideas of coming home: "No matter how extreme the circumstances you’re in, they become normal...you’ve been in this kind of heightened state for so long, just the ordinary nature of everyday life can be confusing and frustrating."

For the past few years, I avoided birthday parties for Zach.  I really wasn't all that confident that he understood or appreciated the concept nor the party, and felt that I was pushing one world onto him that he didn't appear to want to participate in.  I also had a hard time rectifying who I would invite, what I would say to those invited, and could I deal with the possibility of unpleasant surprises when some of Zach's guests' parents realized he had a disability.   Yes, I am a very flawed person.  I was too weak to stand up to this situation so I let it pass.  I am not sure why - perhaps all my strength has been used for other battles along the way?


I am not quite sure what made me braver this year, perhaps it was the fact that I have bonded with some very strong women (and a few men) who are parents to special needs children - and I don't see them fretting over stuff like this.  Perhaps I don't care what others think of me quite as much as I did a few years ago.  But I also view life a little differently now, after years of feeling like I was in control of so much, I am more now curious about the possibilities of what could be.  So the invitations went out - and lo' and behold the RSVP phone calls came in from some of Zach's schoolmates with proclamations as grand as: "She is so excited about coming to Zach's party."  or "My son keeps on asking if it is Zach's party yet."

I just love kids.  They all know Zach has autism - they might not know it by name, but they know something is up with him.  Zach is in a typical class where he has an aid to help support him.  Knowing Zach is different did not deter many of these kids from attending his party.  I have a feeling they didn't think twice about it.  Wish I was that great.

So they came and there was bouncing in the bounce houses and there was cake and there were presents.  I would like to say it was exactly what I would have had for him had he been a neuro-typical child, but I would be lying.  I would never have invited some additional friends with special needs as I did to this party.  It wasn't that I was prejudiced per se, but I wouldn't have been as intimate as I am now with some of these great kids, I would have been afraid to reach out to them and their families.  Afraid of what?  I am not quite sure.  Probably not being able to relate more than anything.  Ahh - those different worlds.

Truth be told, this party was difficult for me - especially when conversing with the parents of children who have no (noticeable) special needs.  How do I relate that I followed Zach around for hours prior to ensure he had a bowel movement so he did not decide to take the opportunity in one of the fine inflatable structures at the House of Bounce?  How do I explain to them that although I never have seen Zach be aggressive to another child, that didn't mean I could trust him to not accidentally ram someone when going down the slide since he so often doesn't seem to understand the concept of personal space?  Or how I can't take my eyes of him or be out of quick reach of him, because if he wants to bolt, he will do so and end up in the middle of the parking lot, even though he hasn't done it before - nothing keeps me from worry that this won't be the first time. 

As I attended my school's PTA meeting, I heard some of the parents complaining that so-and-so teacher requested the kids have an orange 3 ring binder and this was some sort of travesty.   I thought to myself: "If people only realized we were dropping $2500 a month on therapy, we have driven all over the east coast for doctors appointments for him, paid for thousands of dollars of supplies, attended more classes and trainings on his treatment and education than a graduate student, we get the sleep of parents of a newborn, and still have all the typical things to worry about - a mortgage to pay, cars to keep up, aging family members, and more so - our children's futures which are more uncertain than anything."  I couldn't help but think: "Really?  Orange folders are what these people have gripes about?"  I don't mean to put these people down.  Perhaps this is an unreasonable request of Teacher X for some reason or another.  It just seems that in this other world that we travel in, that seems pretty innocuous.  This makes me very hard to relate to I am sure as my eyes glaze over about having to run to staples for  a $3.25 folder.

I heard some parents discussing the budgets for our modified sports programs being cut, I purposely try not to pay attention for fear of what I might hear.  Lurking on the internet as long as I have, I know that children like mine, with special needs, are frequently the talk of anonymous online newsrooms and how money is wasted on special education.  Comments on the order of "because of those kids little Johnny isn't going to be able to travel with the lacrosse team." or "Why are we spending a dollar on a fifty cent kid?"  I just cannot even let myself approach these conversations. 

Now, more often than not, people, even if they do feel that way, usually have the sense of civility to at least not mention these things publicly.  And in fact, there are people who are so supportive of those with special needs without having a personal reason to be; I am in awe of their empathy. Compassion on that level was not innate for me. 

I wish there was a way to reach out to those people who I once was, and let them know how to extend themselves to others, others who face greater difficulties in this life just out of sheer luck, not personal fault.   With autism now affecting 1 in 88 - it sure does feel like those numbers are increasing even though the "experts" are in disagreement as to if they are.  As one mom I know likes to say: "Autism: coming to house near you."

So Zach had what appeared to be a very typical kid party.  For that I am so grateful - the other parents didn't appear shocked when they met Zach.  Did their kids tell them beforehand?  I was trying my best to act normal, while parents spoke of soccer, spelling tests, and vacations I nodded with some recognition, although applied behavior analysis, hippotherapy, joint attention, spontaneous speech, and modified curriculum are generally more of what is going through my head when I think of Zach.

We live in a heightened state around here, we are limited in the activities we choose and we are "always on" as long as Zach is awake, for his safety and well being.  We have become accustomed to it, but the ability to relate to those without this makes us pretty much avoid a lot of social engagements.  As I explained how I worked with my son to a member of the school staff, she looked at me in surprise and responded: "Boy, you sure must have a lot of patience."  It's what's required to parent a special needs kid.  That and money.

Now before people go pitying us - please don't.  As crazy as our life is, I am so happy to have both my kids.  Zach's circumstances have taught me so much about life, I am definitely a better person for this.  As I said before, I wasn't born with the innate sense of understanding to those differently abled from myself, I frequently took my abilities in life for granted.  In the words of Madame Blueberry from Veggie Tales: "A Thankful Heart is a Happy Heart." I was never truly grateful for all I had, so I never was truly happy.  Zach has enriched my life this way - I truly am a much happier person!

 Maybe one day I can manage to get this very basic tenant in life across to others.  But for now, I will just relish the smiles of my dear boy and make sure he doesn't flood the bathroom, again.