You saw a hint of it here; but now I have a doctor's note to prove it. Christina, by means of my answering a Vineland survey and other self-reporting psycho-social tests, as part of a research project at the University of Rochester, has some personality tendencies that keep her from reaching her potential. Her refusal to break with certain routines, for example, and potty train, or her lack of cooperation with therapists in the home have made me feel like she will never learn to speak or use the toilet, get a haircut without a struggle, or stop running away from me in public, or get along with children smaller than herself. I have sought help in these areas, but nothing has worked. She hasn't potty trained in 5 months, she wasn't accepting her home therapists these past two months, she continues to hit children smaller than herself, and run away from me in public, forcing me to use a stroller to keep her safe. She seems stuck in toddlerhood.
I want to take her out in public and watch her play happily with other children, without an incident like a hot day last summer, when she hit a toddler's head hard against the bars of the playground, and his mother came running at her cursing like a sailor. I was mortified not only by what Christina had done, but by this mother's behaviour, and grabbed Christina out of her path in fear of her reaction, avoiding the park since. This incident has really shaken me, and I fear that in social situations, she could make herself an outcast like Peter in the HBO documentary, "Educating Peter". It's a two part film about a young man with Down syndrome in Virginia who had been mainstreamed into public school classes. Peter was the favorite of his second grade class, but, by the time Peter was graduating from high school, he had no friends and no job. He couldn't even tie his shoes. This is what I fear for Christina, not because she's not bright, but because she doesn't cooperate, and can't express herself in words.
She can count to ten and knows her colors, but has only done this once for her teacher, though she does count on her own or with us. She can throw a ball, but rare was the teacher for whom she would do this. I asked everyone I know how to overcome her refusal to do what she can do on command, and not one of her therapists had an answer. We even had a grant for a behavioral specialist who wasn't able to crack her code of refusal.
But, apparently God can. Today, she asked her speech teacher to go outside, and spoke continuously for their 45 minute session today. Her teacher was amazed and delighted; she hasn't had a day like this in months! Then, in her school-based sessions, she was again singularly cooperative, asking permission, for example to eat the Play-doh (promptly denied) and actually obeyed! She asked for her therapy vest to come off, rather than trying to pull it off and crying in frustration. Again, the therapists were overjoyed.
I am presuming that this is because your prayers for her are having an effect, coupled with the new pre-school, and five fewer therapy sessions in the home. Christina hates having to take instructions from therapists in our home, it seems to her enough to have two big sisters, and Mom and Dad bossing her around. She takes every opportunity to tell the cats or the dogs where to go and how to behave, she's got to be the boss of somebody!
Please keep the prayers coming, I had never stopped praying for her but my hopes for her were very low. I felt like a failure as a mother, yet was not able to trust her full time to a school before she can speak and tell me when something's wrong.
Today may not be repeated, but it has reminded me that she can change, and be open to all the wonderful gifts God has given her, and reach out and grow.
And I will re-learn the beauty of the Communion of saints, those of you who are here and those I hope to meet in heaven!
5 comments:
Oh Leticia! If you ever feel like a failure as a mother again, go back and read your posts about taking Christina to Eucharistic adoration. I forever have an image in my mind of her waving bye-bye to Jesus. Not having a child with Down syndrome I can't begin to imagine what you are going through, but please be assured of my prayers. I firmly believe she WILL be able to do everything you want for her one day!
There are going to be lots of breakthrough days like this in the future, I bet - as she learns more and more. She is making you grow in virtue in the inbetween times. :-)
I'm glad Christina had a great day. As happy as it made you, imagine how good it must have felt for her to have gotten through the day without a lot of struggle and seeing how much she pleased everyone. May she have many more!
What a delightful day! I know how much joy this must bring you.
Will pray..check out my blog..on Jim Caffery who has a grown up son with Downs...
I know exactly what you mean! My Jackie is so STUBBORN. So many things you said are also true with Jackie. I really don't know what to do either. I hope and pray a lot. She's now in kindergarten and the teachers all say she is stubborn. All it does is hinder her development. I don't know what to tell you, cause I don't know either. I just pray she'll cooperate more soon. She also is off in her own little world a lot. Takes lots of patience!!
Sounds like Christina can improve. I'll pray for you and Christina and please pray for me and Jackie!
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