It was long and uneventful, no breakdowns and only a couple of going out of my way to make a "point" instances. In a nutshell (no punn intended): We no longer have a nurse one-on-one requirement; which is a good thing because the seizures are somewhat under control. So if things keep status quo, I couldn't be happier. No seizures are a good thing; although, it's going to be a huge adjustment and transition to not have LuLu riding the bus and going to school with him every day. She was a great asset to the classroom, the teacher and most importantly to the Doodle and our family. It's hard to find that kind of a good fit. And the Doodle isn't easy, so it's going to take the right person with him.
The Doodle doesn't know it yet, but he's got some big changes coming down in August for the new school year. New classroom, no more medically fragile class. New teacher, new Shape Aid, new Bus aid, new Speech Therapist (YAY!), new kids, new routine, lots of new things. Sounds pretty exciting, but for an autistic child with transition issues, it might be a complete disaster. I'm crossing my fingers and hoping for the best. I'm going to will it with my MIND to be smooth sailing. There. I just did it.
Thanks to my friend Jill...I asked for some more summer-time Shape hours. I didn't even know it was an option. So he'll get 3 hours a week where someone will come and work with him here in the home on "learning stuff". These are the kinds of things "they" know are available but do not offer up unless pushed. Learning what to ask for and what's available is like getting a PhD in special needs services--once a parent goes through all of the ins and outs and ups and downs of years of fighting for services, you are fully capable to teach a class on it and become a special needs advocate/consultant. However, since the services change las frequently as income tax laws, it would be impossible to keep up with what is available.
So, all in all, my 2 1/2 hour IEP meeting was pretty good. No screaming or yelling or arguing and I didn't cry once although I thought I might any second. Once seated around the little kids table in the medically fragile classroom with pictures of severely disabled children and wheelchairs and handicap devices staring at me, I had a moment of "wow, this is really my reality, I have a severely disabled child". Sigh.
Listening to these people talk about him in such clinical terms with not a lot of feeling or emotion became a little much for me and I had to go to my happy place when the lump in my throat started cutting off my air. It's hard, even though I know it's true--how very, very challenged and developmentally delayed my son really truly is. To sit and talk about his learning disabilities, his physical disabilities, his medical challenges and behavior issues, there is no running and hiding or burying my head in the sand. Things have gotten progressively worse in some areas and I'm wondering how unrealistic my expectations are for him. Each end of the year report had the same theme...depending on his mood would determine what kind of learning ability he had that day. Each report talked about his bad behaviors: tantrums, screaming, hitting, throwing. He sounds like such a monster and the mama bear in me almost got defensive until I took a breath and then felt validated.
I have to accept it and I thought I had but evidently I haven't...really. Most of the time I go through my day like this is just a bad dream and I'm going to wake up and everything is going to be ok. Like it's something he migh outgrow. Like he's going to catch up. Like he's going to fit in.
It is what it is and I can only hope and pray that it will improve with time. If I could only will him a better and easier quality of life, I would.