I had planned today to share pictures from my son Andrews Christmas program at school. Andrew has Downs Syndrome. In kindergarten they had created a special part for him and had been very good about including him. After that we moved to Tennessee, which the school system there was bad about everything for him.
We were never even notified if there was no school. So that meant, because of where we were living, that we would load into the car drive down the drive way and sit on the side of the highway in the dark and cold. The bus usually picked him up @6:45 for school that started at 8:05. Anyway so we waited in the cold for a bus that never came.....
So we moved back to Kansas and we have always been pretty happy here with how the included Andrew. He had been in the school system since he was 3, starting in Head Start for his special services. We had always felt that the were doing a great job.
Last week the school newsletter came home and mentioned the 4Th grade Christmas Program and that the kids needed black pants and a solid colored shirt. So I picked up some black pants and a nice long sleeved burgundy colored shirt, you know a Christmasy color. Some point over the weekend the newsletter disappeared. I believe someone else in the house wanted to look at in and misplaced it.
On Tuesday I called and asked when the program was and they told me Thursday at 7:00. They also reminded me to be sure he dressed warm the next day as they were walking over to the High School for a dress rehearsal. So we made sure he was dressed warm.
Yesterday afternoon I realized that I had forgotten was it 6:30 or 6:45 he was supposed to be there. So I called. I got the school principal, I told her I was Andrews mom and asked when to be there. She said 6:45, I said thanks we and we hung up. 5 minutes later I get a call from his special ED teacher.
She said hey, did they tell you he had to have black pants and a white shirt. I said oh, no I could have swore I read black pants and a solid colored shirt. She said I don't think so. I was thinking well I can run and exchange the shirt, no biggie. Well then she says, I can check and find out, but I ummm really think it is supposed to be white. And she said and I know you guys have been struggling while your husband is off work. Which yes was true.
She really is very nice. And she continues on, ummm well did you know that this years program is a play?? I said no I did not. I am kinda wondering, obviously, at this point what is up....... And then she said well Andrew really enjoyed watching the practice. So at this point I am kinda getting what she is trying to say.
Then the poor woman told me this. She said they told me Andrew does not come to the programs, in our schools it is the music teacher who puts this together, and last year Andrew did not go, I was never told when it was. Not sure if they had a part last year either. Anyway she said so he does not have a part.
She said I am sorry I am not trying to discourage you from coming. She said if you want to bring him, I will be there and will take him up on stage, Andrew has to have a teacher or para at all times as he wanders off cause he thinks he has better plans, LOL. Anyway she said she would come and take him up there. And that they would figure something out.
I really appreciated her offer, but this is at 3:45 the day of the play. And since there is not a part for him what is she going to do??? I know she just wanted to correct the situation. She repeated it a couple of times, she did not want to discourage us and would be there if we wanted.
I am glad that someone took the newsletter. If I had not had to call, I would have shown up with my child who was not included and how uncomfortable would that have been?? I told her not to worry about it and I appreciated her offer. I did.
Andrew is a fun kid. People in general love him. They like to play with him and all the special ed teachers say how when there stressed they like to just hold Andrew on their lap cause he just loves to be held. Makes you feel better. Through everyones life there are disappointments. So I am not kidding myself.
But yesterday and today, I am struggling with these. I am disappointed in the fact that the principal who obviously knew something was up, the principles are involved in the programs here, did not say something. I am disappointed that Andrews very nice special ED teacher got put on the spot. And I am disappointed that the school system I had always talked about in glowing terms did not bother to include my child.
I know these are just small disappointments in life. Sometimes it seems being a parent of a special needs child is full of disappointments, lots of them. I was unable to get to my doctor due to weather when I had Andrew, and I was disappointed right away there when the rotten doctor who showed up AFTER I delivered alone at 1: 30 in the morning, my husband was parking the car.
Ths doctor comes in at like 6:30 am, when I am alone, and says your child has Downs Syndrome, he might learn to tie his shoes, and feed himself. And your not alone even rich and famous people have had kids with Downs Syndrome. And he walks out. That was disappointing. Realizing that your child will never be like other kids that is disappointing.
Realizing your child will never marry or have kids or say MOM!!! I want to be a fireman or a race car driver, that's disappointing too. When your child suddenly stops talking around 4 years old, that's disappointing. When you realize that even with everything they do now to include your child and others, that there is still the very real possibility that he will not be included or have friends, that's disappointing. When you here one of your DD younger friends say she was glad Andrew was not in her class at school, that's disappointing as well.
I think what is frustrating is that this last thing, this should not have been disappointing. My Boo should have been included and today I should have been posting pics, of my son and his part in the Christmas Program!!
But you know what today that's disappointing as well.