I was fixing Elizabeth’s hair this morning and may I add that her hair takes a village to do, as it is so curly and PUFFY! I am working on her doing her own hair well but it is a dyspraxic nightmare. I can remember trying to teach her how to put the hair gel on her hair. I told her to put some on her hand, rub her hands together and then put it ALL over her hair. She ended up with the gel on the top of her head only and in a blob as well. So suffice it to say, it is a work in progress! So anyway, I was doing her hair and then she went off to wash her face before her make up goes on. I was thinking of all the little behind the scene things I do for Elizabeth each day. Whether it making sure her clothes matched when she was younger to double checking for spots on her shirts to now encouraging her to remind me to touch up her nail polish when it chips. These are all little things but to me such important things. I have always known that Elizabeth wants to have matching clothes ( see my blog at www.talktools.com ), clean tops, fresh nails and so so many more things but simply cannot complete the tasks by herself. So we help her have what she wants. As she has grown and achieved, more detailed, skilled tasks greeted her. So we keep attempting new things and keep working. But in the meantime, it falls to us to help her with things she cannot yet do well. Continue reading
Can you imagine for a minute, wanting to do something but being unable to? Trying to accomplish a task, but having to ask for help ALL the time? Or being the age of 17 but at times being treated many many years younger? Or having the emotional feelings typical of your real age but because you are also affected by dyspraxia and SPD your feelings are not fully recognized or honored.
Now see Elizabeth, she has had a life full of therapies, hard work, and wonderful successes….and love, we can’t miss that but sometimes when I go to wake her in the morning I look at her and wonder what it must be like to wake up in the morning and simply be HER. I look at her sometimes and wonder what it is like to wake up and have everything be such work. From remembering how to do a skill, to calling up the words to express yourself. There is no doubt that Elizabeth is a strong, strong child, one who has made wonderful gains. Continue reading
I am sitting in the waiting area of our CranioSacral therapist office while Elizabeth is getting her second treatment in three days. As I sit here and hear Elizabeth crying about “things” I am left feeling that same old sick stomach and having the thoughts “How did we get here again?” “How after so many hours spent educating those who work with her,sending notes, communication forms, emails and even inserting myself into the school once a month…did we get here AGAIN?” But perhaps before I say more, I need to give a little bit of backround information here.
This is Elizabeth’s sophomore year in high school. She did great last year and really had no problems adjusting at all. So with that in mind, I did the same things I did last year for this year. I sent informational emails to ALL the teachers and support staff who would be working with or encountering her in the day. I met with her intervention specialist before school started to discuss the summer and all the things we did with Elizabeth and to ONE more time go over how the year will work for her….all was in place….until it WASN”T!…..all was okay for a week, and then I started to see signs of some stress in Elizabeth but since all my daily communications with the school were positive, I attributed it to stress that went along with a new year and new schedules and some tiredness as her school started almost an hour earlier than last year. I let this go until the second week of school and there were a few more signs of stress…some humming…some far off looks …some hiding her face as she walked in the school and some seriously LONG times to fall asleep. So Elizabeth and I talked and I thought we handled well the things she was concerned about. Again, all the information from the school was still positive.
Then came the day she started to asked me to pack her lunch for her. She has not asked me to do this for her since the 5th grade… and it came home untouched….again nothing from the school….So we talked again and then I heard it all…..
How hard the day was.
How horrible lunchtime was.
How much she hates her dyspraxia…..
How the work sent home is “baby work”…
Then the tears came….everyday for three days in a row,
It was like she just felt defeated and sad and …worthless….and it just about killed us.
For those who don’t know our story, these tearful, fearful parts of Elizabeth are few and far between. She is generally the happiest child…so to see these tears and hear her words makes me…to be honest….incredibly afraid.
After this first conversation, I phoned the teacher, and made plans to meet.
When I got there I was greeted with a concerned face from the intervention specialist who is unbelievably kind and loving, and notes from her aide describing all the “behaviors” Elizabeth has been showing for a long time…. I shared that they were the same ones we had seen at home this past week or so.
Our conversation that followed broke my heart…. The day is NOT what we agreed would happen,…..so much needed fixed. and it will be,I offer this story out as fresh as it is in our life for many reasons. Probably the biggest reason is that we as parents and caregivers need to be alert to any changes in our child’s moods or activities as they can signal problems. We need to remember that no matter how much the school may like our children and really want to help them, it is important that they UNDERSTAND our child’s disorders. The warning signs of problems, the ways they can help and the fact that we WANT to know of any changes in our childrens demeanors or moods. I know that we have been on our journey for over 17 years and to have this happen reminds me once again we need to remain alert and stay aware. The teacher said to me “But last year was such a good one, she never did things like this” My response was ” She never did things like this because of the work we do at home and at the school to keep her world organized” I truly think that the school and staff finally understand just how deeply dyspraxia and SPD can impact a child. I think until now, they did not. They saw a pretty, happy and organized Elizabeth. Now, sadly, they get it…. Could we have stopped this chain of events? I think we could have had we known more…….Can we learn from this? Absolutely.
John and I agreed that taking Elizabeth out of school for a few day and getting her system calmed down would be our first step…..then we need to meet with the teachers, inservice them more deeply on dyspraxia and SPD and fix the wrongs in her day so that when she goes to school she can trust that her day will be what we say and she can enjoy life!
This is a blog post that finds us working quite hard for our daughter, but what is amazing in all this is that even though we have been at this for over 17 years, when something like this happens you forget that you might be weary or overwhelmed and the only thing you can think about is how you will move any mountain to help your child.
Elizabeth…you are loved!