A Mother Learns Many Lessons

Posted by Deborah Grauzam on

Elizabeth Blog Post | TalkTools

Elizabeth is one of those children, lucky or unlucky, depending on how you see it, who has a summer birthday. These children get to wake up and automatically be off on their birthday, go outside to play, and enjoy their day but they don’t get to celebrate their day with classmates in the form of birthday treats brought in, singing and signed construction paper cards from everyone.

Children like Elizabeth fall into the “Half-Birthday” crew. Where you can bring in a treat on the day that is exactly six months from your actual birthday and everyone will sing to you. We did not do that but many children do.

My son Michael insists that it is great to have the opportunity to celebrate “half-birthdays” but I secretly think it has more to do with him enjoying the number of treats brought in versus the actual sentimentality of the day…anyway, with Elizabeth having this Summer birthday we decided to make it a big one this year.

So on a beautiful day in June, we had bouncy castles and slides delivered, friends over and a rather delicious mound of cupcakes to enjoy. The party was to celebrate the day she arrived on this earth as well as the year she just accomplished. And it lasted all day!

Elizabeth was the happiest child on the face of the earth that day and those memories are safely tucked away in my heart and mind. We moved our way through a great summer and were riding the wave of happy for as long as it lasted…

The wave officially ended upon entering the school for the start of second grade. It was not that Elizabeth was upset or overly anxious. It was a combination of a few factors. One big one was that our inclusion teacher, the teacher whose class is picked to be the one as homeroom for the special education children who are being mainstreamed did not truly wish to be “the one”. She was less than happy to be in this capacity. I could tell by talking to this teacher and seeing her in action.

She had the inclusion children placed in a small group of desks off to the side of the classroom, very clearly making sure they were away from the typically developing children. Her demeanor was never mean, just conciliatory, as if she was just accepting that fact that these beautiful, special children were in her room, not trying to include them or encourage them to engage with other students.

Elizabeth would be with this teacher for everything but math and language arts. It was kind of hard to be part of this class as my hopes for Elizabeth included her being with typical children, to learn from them and to enjoy all that a typical classroom has to offer.

The other big factor was that the goals on the IEP were eerily similar to the ones on her first grade IEP. In other words, where were the goals that reflected the growth she made last year or even into summer? I was not entirely sure how to fix this as I was quite new to both IEP’s and school related to Elizabeth.

We had an evaluation with Mary our beloved therapist in October and it was at this point that I brought up some of our IEP concerns. When I brought them to the school, these concerns were mostly dismissed and by the time we really discussed them it was at conference time in November.

Even as I write this I cringe as November is in essence January. Because once you hit the holiday time on a school schedule, so many things happen at the school that adjusting goals of an IEP let alone changing the whole attitude of those working with Elizabeth, would simply fall to a place behind holiday programs, shopping with Santa, and the general holiday glee found in most elementary schools. And once you hit January, nearly half the school year is behind you. So the combination of these two factors led to my feeling so uneasy most of the year.

Why didn’t I push a bit more? A better question is why didn’t I KNOW to push a little bit more? This is due, I am sure, to my being quite the novice at this whole IEP process. As well as, how to be an advocate. But, to watch time passing and the attitude of those working with Elizabeth to be one I would term almost acceptance and lassitude, versus the one I have of “let’s go and raise that bar”, was so very difficult and frustrating. No one was ever unkind, but we seem to be quite far apart in how we approached the goals for Elizabeth.

Elizabeth was still working on achieving longer sentences and clarity. We would do the work from Mary at home, including oral stimulation done prior to the speech sessions to kind of “wake up her mouth”. The work was not always easy to accomplish because she was becoming tired of the oral motor work as well as being fatigued by the demands of a typical day at school. But still we worked on these goals.

We tried to work with our speech therapist to have her do oral stimulation with Elizabeth. We asked her to use mint toothpaste or lemon glycerin swabs to stimulate Elizabeth’s mouth prior to doing the oral stimulation with the Vibrating Elephant, purchased from TalkTools, and were told that she was not comfortable doing these things as Elizabeth did not always want to listen. I tried to explain her disorders to the therapist but she was quite reticent to try. We asked her to use the Jaw Grading Bite Blocks to help with her jaw strength and she said the school did not have these items to use. So, I offered to supply the school with the items.

It was quite the hard fought victory to have her actually try to do these oral-motor activities and as such, I learned yet another lesson. You may have to work quite hard to have the school truly understand your child’s need and then even harder to make sure they do all that is necessary for your child. I had such a hard time believing that this therapist would NOT do something for Elizabeth that was so necessary for her to continue getting clarity of speech. Simply put…lesson learned.

There were many lessons learned that year. I would say not too many were heartwarming, I learned to be more involved in her school days. I learned to communicate daily with her teachers. I learned an IEP is a working document and that adjustments can and SHOULD be made for the sake of the child and their continued success. I learned that settling back and trusting the school was NOT going to be in the cards for us and I learned that inserting oneself into the school at least once a month to check in things is quite essential. I learned that not every inclusion teacher is happy to be said “inclusion teacher”. I learned that even though we may raise the bar high at home, unless it is raised at school, the successes and gains of the child will not occur. I learned or should I say, I began to learn how to advocate for my child. You know how people talk about “sophomore slump”? I think we had a huge case of this.

I will say that through it all, Elizabeth continued to be the person she was before. Kind, sweet, caring and very well liked. I know she was blessed with the ability to kind of step over the negatives and continue to enjoy each day at school, being with other children and enjoying each day. These are the gifts that Elizabeth has.

The school year came and went in a fashion that I was ill prepared for. I wanted so much more for her educational and speech goals that year just did not come. Since the year would not be one in which Elizabeth learned a lot, I used it as one that I would learn from.

I did just that and when the year ended, I had a big, long list of things that we would address early in September, as Elizabeth would be entering third grade. As well as plans for me to meet with the teacher every three weeks.

This journey does not come with instructions and certainly does not come with a guarantee of success. We may have had a tough year but as the song says “what does not kill you makes you stronger” This year made me…stronger in my advocacy, stronger in my belief in my child and stronger in my drive to make sure all that could be done for her will be done for her.

The journey this year kind of twisted and turned but we anxiously awaited the chance to put to use all we learned.

Where will the journey take us next?

-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.

bite blocks Dyspraxia Elizabeth's Monthly Updates IEP inclusion oral motor exercises Oral Placement Therapy oral stimulation school therapist sensory processing disorder SPD special ed special education special needs speech clarity speech therapy goals speech therapy in school

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