Interning in Advocacy

Posted by Deborah Grauzam on

Elizabeth's school picture | TalkTools Blog

I left everyone last month by saying that Elizabeth was going to school!  What an accomplishment for her and her strength. Yes our little Elizabeth is in school.  Everyday of every week she is in school.  She has a great intervention teacher and a very nice inclusion teacher.  The inclusion teacher is the one who has all the typically developing children but whose room, it is determined, will be the one Elizabeth uses as homeroom.  It is in this room that they have circle time, morning meetings and all parties. Elizabeth also has an aide that she will share with four other children.  The thinking behind this was that the aide would be there for her when needed but by the number of children she was to help, it would encourage independence in Elizabeth.  All was in order…it was quite official, she was a member of our school system.

Something that I think is amazing in this journey with Elizabeth is the number of feelings I can have in the course of a single day.  I can rejoice, worry, pray, feel relief, feel her pain, feel immense love, wipe away tears and fall on my knees to thank God for his grace.  Some feelings can take your breath away with their sheer strength and some can be simple little tugs on your heart that go away after a bit.  But one feeling I was NOT ready for was the one that accompanied the huge milestone that Elizabeth just achieved.

I was not ready for this feeling of loss. It was not a loss in the typical sense, where you have something and then it is taken away.  In my case, I think it was the feeling of a loss at what could have been.  Here I have this wonderful child so trapped in her disorders that finding her took so much time and effort, then as we continued to work and achieve, time continued to pass.  Just as we see the true Elizabeth, the one with the bright eyes and easy laugh, she is at school age.  With a bit more work, we feel she is ready to head into the school and LIVE.   And just as I see her head into the school, I feel, so empty.  It is like I guess I thought that we would have some time to simply BE.  To have Elizabeth in a state of calm and happy at a time that would allow us to enjoy those special times that you get when your children are young and are all yours, with no real accountability.

It hit me pretty hard that we did not get that gift.  We did not get those quiet times, those quiet mornings to sit together with no where to go or really nothing to do than just share time.  We worked and worked and so many wonderful gains were made so wouldn’t follow that I would simply be happy.  I would have thought so, but I guess it finally dawned on me that I was simply NOT going to get those times, that my time alone with her was done and that she was moving on in the world….and I felt quite cheated.  Again, the very thing we had prayed for had come to be, but it brought with it some feeling that were hard to deal with.

Something that helped me through these feelings was seeing just how much Elizabeth loved going to school, being with other children and doing what it is that children SHOULD be doing.  The typical kid things…coloring, singing, eating in a cafeteria, recess, and so much more.  Seeing her smile and laugh about her day helped, seeing her pick her outfits (SO MUCH PINK!!!) was fun, (She even used my perfume each morning resulting in two teachers asking my what makes Elizabeth smell so good),  doing homework with her was a novelty.  These good things helped me take the focus from me and put it once again on Elizabeth.  This was where she needed to be and wanted to be. When I think of Elizabeth just a few years prior, and mentally see the child who cried all the time, whose eyes looked so afraid and who was unable to speak a word, we can respect just what a huge accomplishment this is.

I like to think of Elizabeth as a work in progress. Because with her disorders, she will always be working on a new goal or skill.  And also because of her disorders, it is vital that those working with have an understanding of her disorders, how they affect her and how to work with her.    It was at this time that I started what I like to think of as my internship on this thing called “advocacy for your child” I had quite little experience being her advocate with educators in a school system and like in all internships there was a great deal of learning to do.

Something that I learned that year was to listen to your heart and follow what it leads you to do for your child.  By this I mean that I learned that I know my child and her needs the best and it is up to me to advocate for her and her needs.

Something else I learned was that communication between us at home and those working with Elizabeth at the school became critical to Elizabeth’s success.  Hearing how her day went, the good and the struggles allowed us to share thoughts and ideas to help Elizabeth.   Something that I learned and I advocate for to this day is to think of the school and family as a team.  NOT two sides that work separately but two parts that should work together for the good of the child.

I learned all these things and more throughout this first year.  I learned to be strong.  I also learned that things in a school system do not always come easy, that attitudes and opinions can cloud good judgment that sometimes you need to be stronger than you ever thought you would have to be, that you could be so thankful to an educator for giving that little extra bit. I also, once again learned just how strong and amazing Elizabeth is.

Yes, she went to school!  A simple declarative sentence, but really is so much more.

A beautiful child, happy at school, happy with her world, who a few short years ago could not have managed to put shoes on or leave my side, heads down the hall each morning to class, carrying her lunchbox and wearing her signature pink color and the perfume we have shared for years.   She is a little young lady.  We are proud.  Simply we love her… I can’t help but wonder what the next step of our journey will bring……

-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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