I went for the placement meeting for the kids at the Special ed preschool yesterday. The meeting began at 10:30am and I left there at a little after 3:30pm. To say I was wiped out is a bit of an understatement. There were 2 potty breaks and no lunch in that time frame. The time was long, and the content grueling. The meeting was more like a summit. I was there with Patty, Nancy-our TIPS teacher, and then there was an OT, a psychologist, a Speech language therapist, a general teacher, 2 transition teachers, and the special ed teacher assigned to Kynsie or Kyan, depending on the session of the meeting. It was intense. I knew going in that the meeting would be hard, but I was not prepared for the emotional toll it would take on me. Not sure you can ever be prepared for things like that, but I did try.
I really thought the meeting would consist of going in and being told that Kynsie and Kyan qualified for special ed preschool because of their test results indicating that they were on the autism spectrum, and then we would discuss class placement and scheduling. Unfortunately, in my planning and preparing, I missed a few key and particularly difficult steps in that process.
When we began, Kynsie was up first. As we began talking about Kynsie, everyone began giving their reports of Kynsie's testing and explaining her scores to me. I had a written copy in front of me as well. Kynsie was given several tests- 6 or more, and I filled out 4 tests on her myself. In all of these tests, a normal score began at 80-85. Our little Sissybug scored consistently in the 60-65 range on all subjects in all areas. In addition, my scoring of her placed her securely in that scoring range. Several of the tests were autism indicators, and her scoring indicated Autism. As we went down those columns on the first page and every score was a failing score, I slowly came apart. It is SO, SO, SO hard to see that sort of thing in black in white. There is no hiding from it. No denying it. No questioning its truth. Not Autism Spectrum Disorder or ASD. Not PDD-NOS. Not Developmental delay. Just plain old Autism, with all its deep and ugly meaning. Autism. Autism. Autism. Autism. Over and over again. Failing scores, developmental delays, and autism. I stared at the words as they screamed at me from the paper, and my tears started flowing. I had to excuse myself to regroup. When I came back to the meeting, they told me that Kynsie did qualify for full services because of her disability, and that we would proceed with her goals and classroom plans.
Before I go any further, I should talk about that word disability. I have never considered disability a bad word, or a good word for that matter. It has always been for me an other word. Other than me. Other than my family. Just other than...anything I have ever experienced. So the first time I heard the word disability used to describe my child, I had to take pause. Truthfully, it was a kick in the gut. After I caught my breath, I stepped back to analyze that word disability. I just had to get my mind around the concept that my children were disabled. Could it be true? I starting thinking about the word and it's definition: crippled; injured; incapacitated. I also thought about making someone unable to do certain things that most people can do with ease. Did that word really fit Kynsie and Kyan? I decided to find out.
I began thinking about what Autism has done to our family, and most importantly to our children. What has it taken from them or made them unable to do?
Diet-Unable to eat 'normal' foods. My kids have no concept of McDonalds, or Ice Cream, or really any other typical 'kid' foods. On pizza day at school, my kids eat sandwiches.
Social-We have had the sum total of 4 play dates ever with our kids. On one hand, they are a play date all by themselves, but the true reason we don't go is because I know Kynsie and Kyan would have trouble. It is hard to explain that your child can't share, not because he is a brat, but because his autism gets in the way of his social skills. And it is hard to explain that he hits not because he is mean, but because he has no coping skills for anger or frustration, AND-that a spanking won't fix that, it only makes it worse. Or to let someone know that Kynsie is pacing back and forth to soothe herself, and that she is ok, just stimming--that's a whole long explanation that is not exactly play date chit chat.
As a family-we don't go to group social events, even with close friends with our children. They can not handle the over stimulation, and we can't handle the stress. There is nothing enjoyable about a 3 year old freaking out for 45 minutes while you try unsuccessfully to console, and others just wonder what is wrong with your child.
We don't go out to dinner because A. they can't eat anything prepared out due to food allergies, and B. all of the people, food, smells, and sounds are overstimulating and Kyan and Kynsie scream the whole time. We draw enough attention as it is. We don't want anymore.
School- Kynsie and Kyan can not consistently participate in classroom activities with their peers because their autism gets in the way. Some days its the texture of the craft. Other days, it's the loud noises or the change in the schedule. But any way you slice it, regular school is more than they can handle.
So the longer my try on of the word disability continued, the more convinced I became of the fit, and the tighter that knot in my chest became. I didn't want that word to fit. Like that itchy sweater from aunt Ida, disability is uncomfortable, unpleasant, unattractive, and unwanted. Just the same, no matter which way I turned the word fit, and denying its truth was futile.
So, we moved through Kynsie's goals in a fairly painless manner. I met her teacher and found out that her class is specifically for Autistic children. Another punch to the gut, but my recovery time was getting quicker as the meeting went on. I saw Kynsie's classroom, and pictures of the other children. There will be 5 kids total, and one of them is another little girl named Izzy. It is my prayer that Sis will have a new little friend. My soul was and still is heavy. I know that this placement is right and appropriate, but she is my baby, and I HATE that the sweater fits.
We got to Kyan next, and though I knew Kyan was more delayed than Kynsie, and felt more concerned about his Autism, I still did not expect the news or the diagnosis we got. Again, the pattern was the same with test results. Kyan tested very similarly to Kynsie though he struggled more significantly with language and some other coping skills that Kynsie had done fine with. His scores were pretty close to hers with language and cognitive skills, but his markers for Autism were higher. There it was again all over the page, Autism. Autism. Autism. I loathe that word. I know it is true, but it doesn't make me hate it any less. Perhaps it is the truth of it that makes me hate it most.
Even though I was still reeling, we got through the goals for Kyan-the mercifully easy part of the meeting. Next we talked about class placement, and my emotions came roaring back to life. Kyan was to be placed in a 'transition class' for kids with Autism who do not yet have the readiness skills necessary for 'attending' in or participating in a regular special ed preschool class. This class is short term and intensive. I was warned that he will be really frustrated at first until he learns to abide by routines and learns to focus and participate. There are 2 teachers and 2 Teacher assistants in this class as opposed to 1 teacher and 1 T.A. in the others. Once he develops these skills, Kyan will transition to a regular class specifically for Autistic kids. It is hard to accept that he is delayed enough that he can not handle a 'regular' class for Autistic kids. Just a lot of absorb. I met Kyan's teachers and saw his classroom. It is a good place and they are good people. He belongs here. It will be OK. That was my mini-mantra as I self-talked my way through the tour and worked my way toward acceptance.
I watched them sleeping last night and just kept telling myself that we will get through this.Kyan and Kynsie are sweet, happy, loving, and bright. They have great eye contact and love hugs and kisses. They don't flap their arms or twirl in circles. They can ask for anything they want, and have vocabularies of over 100 words. They know their ABC's, all shapes including trapezoid and octagon, and can count past 10 in English and Spanish. The psychologist and therapists all had positive things to say about the kids and praised these skills and their willingness and ability to learn, which puts them ahead of the curve when it comes to Autism. So--there is a bright tomorrow. We still have a long road ahead, and a lot of work to do and that is ok.
Braylen passed his tests with flying colors. He is slightly delayed in a couple of areas, but is not disabled. This was not a surprise, and really it was great news. Just the same, it was hard because it changes how we need to parent our children from now on. Since conception, they have been a package deal, and now that won't always be the case. For the firs time, the kids will be separated for 4 hours a day, 4 days a week. Each will be in different preschool classes, with Braylen at a totally different school. This is new and different, and will likely be difficult for each of them. It's hard, but we have to encourage Braylen to continue to thrive and grow, and we can't hold him back just so we can keep everything 'equal'. We need to challenge him and nurture him just as much as we challenge and nurture the others. Unfortunately, this will mean that more and more, their activities are different because we must accept that their capabilities are different. For example, the kids were invited to their first birthday party at chuck e. cheese this weekend. I was initially so excited for them, but the more I thought about it, the more inclined I became to decline the invitation. Kyan and Kynsie would be in sensory overload big time and they would HATE it. Brandon and I would spend 100% of our time consoling them, and Braylen would not be able to enjoy the party either, even though he would TOTALLY LOVE chuck e. cheese. So after a great deal of thought, I have decided to have Brandon take Braylen only to the party. There is a part of me that feels I am cheating the other two, because birthday parties are supposed to be fun and exciting. I don't want to take that from them. But the truth is, with Autism, birthday parties are loud, unscheduled, smelly, sticky, crowded and confusing, and really not a lot of fun. So add birthday parties to that unable list. As hard as it is, I don't want to keep Braylen from something he will love, just so I feel that I am being 'fair' to the other two. The kindest thing I can do for them, is keep them home or take them somewhere they do enjoy and make it a happy time for them. Just have to keep reminding myself of that.
So we are turning a corner. It is hard to see the developmental gaps between Braylen and his siblings grow, but I am committed to nurture and encourage them right where they are, even when it's hard.
Here I am a day later, still emotionally, mentally, and physically spent, but I am closer to okay today than I was yesterday. My children are the same today as they were before that meeting. There are worse things than Autism--MUCH WORSE. Dark, scary things that we know nothing of. I feel guilty that that knowledge doesn't snap me out of this funk, but to be honest it doesn't. This might not be as bad as it gets, but it hurts like crazy, and I just need to sit here in it for a moment. I am licking my wounds, and I will be ready for the fight again tomorrow. But today...today it hurts and the tears are flowing, and that is OK for today.