Wednesday, January 19, 2011

That about covers it all.

I've been having a really rough past couple of days. I mean, we have bad days around here, where I wonder how I'll get through, but I usually pick myself up and move forward until I get over it. This time, I'm not getting over it as well.

For those who have kids who are going into Kindergarten next year, this is the time of year where you start getting your stuff together. Birth certificates, shot records, proof of address... and you get to find out more about your school (or, as us moms of kids with special needs' kids know them, your 'home school').

For special needs' families, there's (as usual) complications. See, we get to have these meetings. They're called IEP's (Individualized Education Program). It's when you, teachers, therapists, principals, representatives from the district and random people you have no idea who they are all meet in a giant conference room to discuss the services your child needs. I can't even explain how much research, thought and prayers parents put in before stepping foot into the several-hour meeting.

In order to discuss services, you get to hear about every delay and non-accomplishment your child has. While I should make clear that the teachers and everyone else we've had the experience with are angels they're so kind, there is no easy way to hear that your child cannot do what other kids do. You are bombarded with percentiles and age equivalents. Not so great when your 3 year old is at a 3-6 month old level for communication (yes, this was JT).

The added stress of this before Kindergarten is this is when we decide whether our kids will be 'mainstreamed' (ie in a class with 'typical' peers) or placed in special education.

Long story short, we haven't had our meeting yet, but his teacher and I agree... JT will be going to special education.

I knew this was going to happen. I am not deluded into thinking my son is capable of being one of the thirty kids in a K classroom with one teacher and one aide. I know this is not possible.

For some reason, though, yesterday it hit me. He's not going to regular Kindergarten. My kid is going to be in special education. At school age. For real.

Cue incessant tears.

This has me reeling. I can't stop thinking about everything... everything we have done. Was it good enough? Everything we haven't done... would it have made a difference? If I went back and changed something... would he be with 'normal' kids right now? How do I know I made the right choices? How do I know now I'm making the right choices? What if I've f*cked everything up, and it's because of me?

And this is a dangerous path to start heading down. Because then I question *everything*. Is this some sort of cosmic karma? Did I do something so awful that God or some higher power decided to punish me in the most cruel way possible: by forcing me to watch my child struggle?

As a side note, don't think I take JT for granted for one second. He (and his sister) are the absolute light of my life. I am so incredibly thankful to have happy, healthy children.

I have met some wonderful people, people who have loved (and do love) my son for everything he is. But I've also begun to see the incredibly cruel people who just don't care, who judge and who show obvious disdain.

I often try to shut these thoughts out... thinking (as pointed out in this amazing Hopeful Parents post) that maybe if I didn't say them out loud made them less true somehow.

But right now, I'm sad. And my reality is different than most others.

My son is going into special education. And I have to start looking into trusts for adults with disabilities, just in case he needs it later.

This is just as difficult to me as the diagnosis was. You always hold out hope, that somehow things will be different than you know they are.

There are so many good things that are going on (for one, his teacher said academically he's mastered Kindergarten, so he doesn't even need it for that)... but I just can't see them through the tears at this point.

Soon, I'll get over it, just like I get over everything else. But right now, I feel justified in being depressed about this whole thing. About life, how unfair it is and my baby.


  1. I'm so sorry Kate. I can't imagine what you must be feeling and what you are going through. I am sure it is really tough. You want only the best for your child. You want them to be "normal" - you second-guess everything. And in the end, did you do everything right? Maybe. Maybe not. But regardless, you did EVERYTHING you could have for your son (and your daughter). You are a wonderful mother and it will be okay. It's certainly not ideal. It's not easy. But you will get through this as you do everything and it will be okay.

    Good luck.

  2. I'm in your boat. I'm nervous as heck. I'm touring the Kindy/sped program @ Nikko's school tomorrow...why? Maybe to make me feel better about his future placement. I'll try not to be sad if you don't. ((((Hugs)))) Don't second-guess all the good that you've done for JT. He's thriving and he's loving, even if he's not always eating. ;)

  3. (((((((((hugs)))))))) I've "known" you and JT for over 2 year now... His progress is AMAZING and you are an amazing mother! Starting K is hard though, milestones usually are for us.