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THE BEST GIFT FROM ELIZABETH

As our journey continued, I was able to revisit the “to do” category of a preschool for Elizabeth.  We initially had tried a preschool in our area that had half typical developing children and half special needs children attending.   We had thought it would be a nice fit for Elizabeth as she would get OT and Speech services as part of her day, some nice socialization and a new experience.  But what we thought would happen and what actually happened were two different things.  Elizabeth started to pick up some behaviors and sounds that we had not seen before.  As this was our first foray into any preschool setting with Elizabeth, we were taken aback.  We came to see that the school did not truly understand how Elizabeth “worked” and as such we knew our time at the preschool had to come to an end.  The whole experience lasted less than three months.  We were quickly learning that our role in helping our child included education of caregivers and new therapists and advocacy.  We were also learning that every twist and turn on this journey was teaching us something….even if we were not in the mood to learn.

This time of Elizabeth’s life, in my mind, is kind of the one that pulls on my heart a bit more.  We really wanted her to have a place to go to be with other children….but we were quick to see that wanting something for Elizabeth and actually finding it are two different things.  We could not simply sign her up for another preschool….this would not be something we could all happily anticipate.  No, with her dyspraxia, speech delay and SPD,  it would be work….we were quickly coming to see that even though we had done so much work with her prior, more awaited us.

We continued to work on Elizabeth’s speech as well as her OT.  We discussed with Mary, that we were going to look for another speech pathologist, one who would work the muscles in Elizabeth’s mouth or a Myofunctional Speech Pathologist.  Mary agreed that this would be a good fit and encouraged us to find her.

This type of speech therapy seemed to be just what we needed next.  We went three times a week to start.  We told the therapist all about Elizabeth’s disorders and she seemed knowledgeable about them and was very willing to try to help Elizabeth.

With much work, think oral stimulation with lemon glycerin swabs, actual physical manipulation of her tongue and lips, many oral exercises to make certain sounds many times. We continued these exercises at home, purchased many glycerin swabs and also the boxer vibrator from TalkTools to help with the oral stimulation of Elizabeth’s mouth and lips. We had new work to do at home but we knew all we did was making progress…and soon I got the best gift from Elizabeth right before Christmas.

The very best day of my life with Elizabeth happened…..syllable by syllable, with the therapist guiding her…  Elizabeth read a sentence from a Dr. Seuss book.   It was AMAZING.  Yes, it was slow.  Yes, it was syllable by syllable.  But it was a sentence.  Our first one…clear and understandable.    I really could not hold back a tear as I held this child on my lap and heard that voice that up until now had been half words, occasionally whole words, when nervous no words…….but was now present and showing us a sentence.

Something else that was wonderful was that this therapist had tested Elizabeth’s responses as we had been going along these few months and shared with me, my second gift, something I had been saying to everyone who worked with Elizabeth.  “Mrs. Gianetti, this child is extremely bright and motivated and she wants desperately to be able to talk.”   It felt wonderful to hear it from someone else and I did not ask her for this information, it was offered to me.

This helped us feel stronger in our advocacy for our child and whatever the next step was on this journey. Sometimes we have to realize, as parents of special needs children, that we need to listen to our heart and to do what feels right for our child.  With that said, we found a wonderful preschool for Elizabeth.  It was run by a friend of a friend.  Elizabeth loved it.  And just like Kathy said, she was so wanting this social outlet. Actually, this is the place she first met her lifelong friend Erica.

I am a firm believer that there is good in every situation in life, that some good comes of all things.  In the case of our first preschool experience, the good of it was that we learned about our need to advocate for our child.  We learned the need for good communication as well as the need for us to fully educate that staff about our daughter.

Well, we did these things and that preschool proved to be a wonderful, happy place for Elizabeth.

I guess you could say we showed Elizabeth the world this year. It definitely took effort and the need for us to regroup and try again.  But ultimately, so much good occurred.  Elizabeth was enjoying life, she made a friend, she had a place to go that was hers and we kept on working hard at home….we even had a first sentence the will always be remembered….yes I would say it was a good year.   The journey continues…..

-Michele

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

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