I am going to try to approach this as delicately as I can. Whatever never mind. So today was Nate’s IEP meeting. You know, the one before the BIG one in March (kindergarten placement) Tensions are high- well for me anyway. I cried at least 3 times during today’s meeting. I cried in the parking lot before and after. I cried this afternoon. And once again, nothing has changed- I mean he’s continuing to very slowly progress. He’s showing some “positive signs” of progress. Blah, blah, blah. We are moving “away from academics”, to the more practical, social and communication skills- which is what he needs, but it’s sad, and it’s hard. His goals these days sound very similar to his goals when he was 2- he does a better job of actually achieving them, but it’s still just tough to swallow. I was speaking with his teacher, who I adore, at the entrance of the school after the meeting for a while and started crying AGAIN. And she asked “why the tears? He is doing great!” But I just couldn’t get on board today. So I just said, I just love him so much, and I’m scared. She said she loves him too. And I know that she does. But in that moment I just wanted to scream, you don’t understand!
It’s much easier to view the little progresses on a day to day basis, and focus on those and not the long term picture when you go home at night. There, I said it. We are surrounded by lots of supportive people, who try to empathize with our situation. But they can’t- not truly. Because they get to go home. If someone asks, who is responsible for this child, the answer is me (and my hubby). At the end of the day, if Nate can’t communicate effectively or function independently, it is my responsibility. Both John and I have already been mentally preparing ourselves to be lifetime caregivers, to have a trust set up, to have extremely detailed plans in case we both pass away. Here’s a story to make you cry- one day I was talking to my younger sister about this- she has a new baby, he’s 4 months old. She said to me “I want them”. I didn’t ask, didn’t broach the subject, she asked for them. OK, sorry, that just popped into my head and makes me sob every stinking time I think about it. What an amazing woman.
Anyway, so while I work my very hardest to focus on the little things- like Nate’s trick or treating success last week, or the fact that he is showing some interest in some toys FINALLY, there are days, like IEP day, when I just can’t do it. On those days, I find myself thinking about 5 years from now, 10 years from now, and even further into the future. And I can’t revel in the little things. Well, I take that back, I can, for a moment, but my focus doesn’t stay there. I think about the IEP meetings of the past, and the ones to come, the positive changes, and the areas where there is a real lack of progress. And it scares the crap out of me every single time.
Add in another IEP, another set of interventions, another set of special educators just casually emailing or sending new suggestions, apps, tools, progress reports, etc, etc, etc, and some days--- well it just flat out sucks. Today is a sucky day for me emotionally. And we haven’t even done Jack’s math homework yet J.
Do I have some words of wisdom to wrap up my whiny day? Well kind of. Grab your other autism families, grab them and hold on- you need them, and they need you. Appreciate all the love that the family members, teachers and therapists have for your kids, even if it is slightly jaded by the fact that they only deal with behaviors for short periods of time and then they move on with their lives. You need them to love your kids, you need them to be able to go home at night and recharge- because then they will continue to fight alongside you for your kiddos. The trick--- and it is a trick- is to recognize that you will never get to do this yourself. But that just like them, you too need to find opportunities for respite (although you clearly won’t get them as frequently haha). This is something my husband and I are working on- dating again, even if it’s dinner in an hour after an appointment, or an autism conference, or finally, finally going away for fun for the first time since we became parents for our 10 year anniversary. The burn out rate is high among special educators and therapists. What does that say for OUR burn out rate?? It says, we damned well better take every single break we can get- that’s what it says. It's not being selfish, it's refueling. So we can come back swinging.
But for tonight- we’re skipping baths, and I am writing Jack’s math answers instead of making him practice his fine motor skills. And somewhere tomorrow, his teacher will see this and maybe think that I was being lazy. Nope, not lazy- just prioritizing my sanity today, that’s all.