Champions in the Ring

It is somewhat early this morning on a Saturday. With my oldest son in marching band, it feels like I have taken on a part time job. But, there are no complaints coming from this girlie-girl. I have spent most of the past decade waking up at the crack of dawn on Saturdays against my will. Liam is still peacefully asleep, and that is just fine with me. Once his feet hit the floor, I am on duty, so I treasure every 'non-waking' moment. :)

Big bro Walker carries a heavy load on and off the football field.

With Walker being in the marching band, it has been a different kind of busy. A nice busy. There are rehearsals, band camps, performances, and meetings. There are early mornings and late nights. But, as a parent with a child on the autistic spectrum, most of my school visits and activity have been IEP meetings, doctor's visits, and therapy appointments. This is the one memo that you do not get when you first get your diagnosis of autism. 

These psychologists know what they are doing when they give you the big 'A' on your child's chart. They don't blast you with all the information on the first visit. Because if they did this, you would hurl yourself off the nearest, tallest building. They don't tell you everything that you will encounter. They allow you to decode this for yourself, one day, week, month at a time, like a slow, painful death. (I kid, I kid)

I think this is the grace of not knowing the future. If we as parents knew what we would encounter, we could not handle it. We are just doing good to make it until the next day, much less month. 

Liam had the misfortune of having five or six different special ed teachers in less than five years. You might be tempted to say, so what? My kid has a different teacher every year! To that I say, talk to the hand! Because if the change and disruption of moving up a grade is not enough, the change in leadership for a child with autism can be devastating. 

This is the secret that we parents of spectrum kids know. You cannot do sudden change. Your kiddo will put you through the seven realms of hell if you do things to disrupt their cosmos. Autistic children depend on consistency like we do water. It brings them comfort and stability in a very unstable world. 

(To prove this point, generally every morning I watch the Today show. At precisely 7:27am, the local news comes on the TV with an update on news, traffic and weather. I know this because at 7:27am, their NBC news theme music comes on. Liam dramatically stops and drops whatever he is doing to stare at the TV and listen to that theme song. He will stare at it so intently and then have a smile of relief like, "whew, okay, I can move through the day now." I made the horrific mistake of instead having the ABC affiliate on the other morning. I shall never do it again.)

But, back to the lecture at hand, (Dr. Dre reference), change is no bueno for these little guys. And, unfortunately, we must learn the hard way. If I do something twice it quickly becomes 'routine' for Liam. So, I really have to be careful what I find myself doing. (like watching the Today show) [see also, "Hairspray is Hazardous", a few blog posts ago]

So, there we were having a new special ed teacher every single year of school. And, if learning is a bell shaped curve, figuring out Liam is like tackling the Liberty Bell. Or the biggest bell you can think of. 

I love walking in to these teachers on the first day and seeing them bright-eyed and bushy-tailed. Fresh out of grad school, they are ready to conquer the world of autism. It's like they are these young, champion boxers in the corner of the ring, bright red boxing gloves on, with a 'can-do' attitude and a perma-grin smile. 

By week 6, they are beat up, ego-bruised with a white flag, in the corner of the ring, shrugging their shoulders going, "he was much bigger than I thought", breathing heavy, "man, that left hook...woo!"

Now, no one got a literal left hook from Liam. But, he is smart and savvy. He is not to be toyed with. You must stay one to two moves ahead of him if you are going to survive. 

This is the point when Mrs. Vicki and Mrs. Kelley came in. They looked at the stats, the playbooks of all the former teachers and said, "don't worry, we got this!"

They rolled up their sleeves and made things happen. They started thinking not just one or two steps ahead, more like 5 or 6. They never told me this, but I think they would go home at night and think about my child. They never gave up. They saw his potential and took advantage of it. If Liam tried to flank them from the right, they were there ready to take on whatever he brought-never afraid to change tactics mid-stream if they needed. 

These are the people you want on your team. I feel an incredible amount of gratitude that I live in a school system that has people that give a darn. And, if you are reading this, and you don't have that support, I pray that you can find it in other arenas of your life. And, I believe, with all the new education and info on autism that more and more school systems are starting to 'get it'.

I often say Liam's smiles get him services at school. This is Liam wearing Walker's band shako. 

I know I stress this a lot, but support is paramount. These two women have been and continue to be creative in their approach with Liam. It takes smarts and know-how, but it also takes a necessary amount of intuition. 

If you do have a Vicki or Kelley in your life that is passionate about your child and the journey your child is on, I want you to drop whatever you are doing and thank them. This job has a high turnover rate because, quite frankly, it is hard as hell. It is thankless because many times they do not get to see the fruits of their labor until much, much later down the road. (if, at all!)

Worship them, kiss their feet, tell them how much you appreciate the fact that they spend 40 hours of their week with your child. (I will often say if I had the money, they would all get week long cruises to the Caribbean, but, alas, I do not.)

It will give them the much-needed encouragement to get back in that ring again- fresh-faced, gloves polished and tight, ready to tackle this diagnosis head on.