Stepping Out of the Oasis and Back into Life

Posted by Deborah Grauzam on

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It is funny or maybe not funny, but ironic that with a special needs child all the things you have in place and are working one minute can become things that need changed and adjusted the very next. I know the same can be said for life with typical developing children as I have two also, but the sheer work involved with finding the next right therapist, therapy or “piece of the puzzle” can make these changes for special needs children seem overwhelming.

With that little introduction in place, allow me to introduce you to a year in our life that had so many of these changes, in such a rapid fire type way that even I, when rereading my book about this year, closed the book and thought “WOW, that was one BIG year”

I know I left off my last blog with the statement that all was very well, we had a bit of an oasis. Yes, we did but then ....life stepped in. Elizabeth was quite happy with her new routine and her home school teacher at the end of the first year and with that in mind, we planned some fun things for her and the teacher to do when school resumed in the Fall. Such as trips to the museum, libraries, art classes and more. As of September, Elizabeth was also attending her old preschool for the socialization part of her needs. And we found a Kindergarten program that was associated with a school in our area and had classes three mornings a week at a local church. So the Kindergarten used state curriculums and the like but had a less stressful feel as it was in smaller classrooms in a church. Elizabeth had speech also and we, of course, continued our work with Mary for her sensory and dyspraxic issues.

It was a busy, full schedule but Elizabeth loved each part and each part was different and necessary. I think John and I felt that her current schedule was meeting all of her therapy needs as well as her need for socialization and the one on one education that was needed.

I guess I knew that, historically speaking, our oasis would not be a forever thing, but I DID think, I would be able to see the signs of a need for change and be strong enough to deal with what we needed to do for Elizabeth....but I did not and was not.

Let me explain. The problems started out so slowly. September went well but then it all started to unravel... First Elizabeth would look very uncomfortable when she went to “school” with her teacher. Which was, for those who have not read my book, upstairs in our spare bedroom. I thought perhaps she was reticent because she liked being with other children at preschool ad Kindergarten school and not by herself. This feeling of being uncomfortable turned into Elizabeth saying that she did not like her school time . While it was great she could articulate this to us, she was still unable to truly express and answer to the “W” questions. Why?, where?, when?.... So with that issue we could not truly understand what she was feeling. I could see anxiety and while she expressed a thought, we could really not get more than that from her. So we talked to the teacher a great deal. It turns out that Elizabeth had been showing some issues in the room, such as shutting down and showing some sensory defensiveness in the classroom. We talked about ways the teacher could help Elizabeth, the teachers feelings and ideas of things to do when she was showing these signs and we developed a reward system for Elizabeth to help motivate her.

Even as I type this now, I can remember feeling remotely sad at the moment of this conversation with the teacher. I was sad because it was like we were back at that moment when you, as a parent of a special needs child, realize just how challenging your child’s disorders are and that you are now facing yet another road block or challenge to your child’s success....and if I am truthful here, I really wanted to make this work. I thought of all the hard work we had done to put this schedule and places in to play and truthfully, I did not want to have to make another round of changes. I pushed away the sad feeling and replaced it with some determination to try our best to make this work. The one thing that I will share now is that ...no amount of MY determination, can change the disorders of SPD and dyspraxia. No amount of MY determination can change the fact that some things can’t be fixed, they must be changed.

If I had to turn our attention to the good parts of this year...I can share that she was enjoying her preschool time to socialize and she was fitting right in with a new groups of children at the Kindergarten program. She had her desk, supplies, a very cute classroom and a teacher who was willing to listen and work with Elizabeth’s needs. And I guess on a very superficial layer, Elizabeth also had some very cute outfits for her school days! That is one thing discovered during this year, Elizabeth loved to pick out her clothes. I would show her outfits and she would decide what she liked that day. I think through all the years of work and therapies, it did not really dawn on me that she would want to do this or that she would be interested in clothes. I was so busy getter us out the door and through a therapy, that pretty much clothes and their colors did not matter as long as her clothes matched, were clean and without an obvious flaw, we were good to go. But, I did learn quickly that Elizabeth, loved pink, purple and yellow, NEVER dark blue or green and she loved dresses way more than pants and there was one set of shoes, she simply would not wear. I believe she called them “ugly”. What a true treat it was to discover something more about my daughter and also, what a treat it was to shop with her and have her have an opinion and choice....yet another beautiful piece of Elizabeth to add to the ones we have discovered before.

So, with preschool and Kindergarten going well, I need to say that our work with Mary was continuing on the same as before. With the work stressing around the oral motor work as well as, once again working on clarity and and sentence length, thinking language and the body work. All of which are serious work. With that said, we began a new speech therapy that was to work on articulation or clarity of speech. Elizabeth went once a week and we did the follow-up at home. This therapist was so genuine and kind. I can remember her asking me all about Elizabeth and her disorders. She told me she had never worked with these disorders before but she was excited to try to help Elizabeth. This therapist proved to be worth every word.

So we now need to rejoin the homeschool story. Something our first OT had said I need to pass on now. It is was that children with SPD, need to end any and all experiences, if possible, on a good or successful note. As they will remember the last association made with the event. Meaning, if there is a struggle, a fear, a bad outcome to an event. They will forever remember that association and as such will come to that association even years after the event has occurred. I hate to say that the association of discomfort and negativity had been made by Elizabeth regarding the homeschool area. It had also been very well embedded as we tried to make the situation work. I referenced earlier that I wish I had had the true vision to recognize the problem and the strength to make changes, instead, I let time pass and tried to make this situation work. All that I succeeded in was making Elizabeth more anxious and the homeschool teacher more frustrated. It came to a point were we simply had to change. I do regret not digging a bit deeper for strength prior but I learned a lesson and made a silent promise to my daughter that if there was a feeling in my heart that something was wrong I would never ignore it again....thus far in life, I have kept that promise. This teacher and I had a long talk and as much as she helped Elizabeth and guided us initially, we both agreed it was time to move on. So we did.

We found a new tutor who was certified in special education, who was actually recommended by and a relative of our newest speech therapist. We met this new addition on a Spring day. Elizabeth was quite nervous to meet her. I could see just how strong her negative association of a teacher and the schoolroom really was. I will be so happy to say...that this new teacher...knew how to gently guide this nervous child to a calm place. As time went on the calm place became a happy place then to a fun, exciting, wonderful place. This wonderful person is still in our life only not only in the capacity of a tutor but a wonderful friend and honorary member of our family.

Our new tutor worked with Elizabeth for a month or so and then posed the next question that would bring about the final change of what has been quite the year. “ I think Elizabeth should go to traditional school next year. She is ready.” This WAS something John and I had thought would be our path but perhaps now was a good time. After all, and as our tutor thought, she was loving the children at school, able to do well with instruction and was going to be tutored in adjunct to anything taught in first grade. Well we thought about it and decided to sign the papers to have her tested. The testing was done, the IEP meeting was held, the plan was in place for which classes were mainstreamed and which were to be in the intervention room. The start date was September. Here we go on another leg of our journey.

I look back at the start of the year and then look at where we ended up and I can only say that I would have NEVER guessed that our journey would take us here but I learned more about life with our special needs child and it was called “ life and Elizabeth’s needs will be ever changing.” Our ability to adapt and change, grow and learn, fall and get back up instilled in us a belief in our own strength and in the strength of our daughter. Dare I say we ended the year in a calm way? Or perhaps best to say...the journey continues.

-Michele Gianetti

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

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