Tuesday, August 26, 2008

one of the hardest days ever...

Today is one of the toughest days of my life. Not that today will be tough in particular. I have no Hurculean tasks on my schedule, no doctor visits, no taxing phone calls. If I get motivated I might do the dishes, there is a shower in my near future, the laundry is in the washer now & I may even take a nap. Sounds pretty normal and boring, doesn't it?

So why is today so hard for me? Today my baby started kindergarten. Yes, I know, kindergarten is hard for any mom. We all get tearful, especially if our little one is getting on the bus. Especially if he will be gone all day. Especially if he doesn't talk, can't feed himself, can't tell someone if he is hurt or scared, doesn't understand playground rules or can't explain why the recess bell sound is terrifying to him.

But even all that isn't why today is so hard for me. Don't get me wrong, all those things bother me too, but I've been through this before. Beastie has been in preschool for two years. He's ridden the "short bus", he's been in a school setting. He even did a full day camp this summer with great success. So I can handle all of the normal first day of school fears, first day of kindergarten fears and first day of sending my autistic child out into the world fears.

What I can't handle is the disappointment. See, when Beastie was diagnosed with autism three and a half years ago, we were told we caught it so early (19 months) that we would be fine. We would just work really hard, get the best therapy that was available and he would be okay. I told people, "Yes, he has autism but it's okay, we caught it early and we will just work really hard and he should be able to start in normal kindergarten in three years." I said for years, "He is the hardest working (two)(three)(four) -year-old you've ever met." Last year, I began to realize that even with all that hard work, I was wrong. We wouldn't be starting "normal kindergarten". We can't even go to "normal autism classroom kindergarten" -- Beastie is enrolled in a special classroom for those with the highest level of need. Plus his level of need is so high he has to have his one-on-one independent therapist in school with him every day. If she can't be there, he can't be there. It's a huge let down from my hopes of three and a half years ago.

So who am I disappointed with? Beastie? Never! He works so incredibly hard to do a fraction of the things that other five year olds do. Am I disappointed with our school system? Not at all. We are blessed to live in an area with one of the best programs in the state, in one of the best states in the country. Am I disappointed with his behaviorial services, the people who work with him every day, set up his treatment plan & teach him how to be as successful as he can be? Absolutely not. Beastie has a dedicated group of people on his "team" who go above and beyond the call of duty, often for free or for little pay to help him learn and grow. Do I blame his pediatrician who gave him his vaccines? No. I made that choice and I would do it again. Autism may suck, but it's better then death.

So who does that leave? Me.

And yet I know I have done everything "right". I've been told hundreds of times, by hundreds of highly skilled professionals that I am the best possible mom I can be, not only to Beastie, but to his two brothers as well. I have even started seeing a therapist to help me get past the "mommy-guilt" that so many mothers of disabled children feel. And yet, when you get right down to it, I have a terrible time getting past it, I know I shouldn't, and yet I still blame myself. I should have done more, I should do more, I should be more, I should teach more, I should research more, I should, I should, I should....

I exhaust myself with the guilt.

So, at the end of the day, my dear, sweet Beastie will get off the bus, over 8 hours after I put him on it. He will probably be napping. He will surely be exhausted. But he will most likely be happy. He loves school & loves interacting with others. And I have to learn to accept that that is enough. I have to let go of the dreams I had three and a half years ago. I have to focus on making today the best it can be and hoping for the best for tomorrow and I can't think about first grade or high school or life. I cannot set my self up for more disappointment. I cannot have any more days as hard as today, one of the toughest days of my life.


Jenn said...

I wish I knew what to say, but I just don't. You seem to have a good handle on it all, and in spite of the difficulty of the day, you will get through it. If it helps to know that I'm thinking of you, I am. Take care.

Vtknitboy said...

oh darling, my heart aches with your anguish! don't be hard on yourself. autism has been a focal point on all the major news networks lately, and this can just help bring people's awareness and more studies to help those with autism and families/parents to deal with it. i send you love and blessings! rejoice in the life that you brought into this world and shine with all the happiness he experiences! xoxoxo chris (vtknitboy)

Naomi Mimi said...

my mom used to say to me "we have strength for today, and that's all we need."

you're a wonderful mom to beastie. i'm cheering for you all the way.