Saturday, May 19, 2012

Sister's Spectrum

Sister has Fragile X Syndrome.

She doesn't have Autism.

But, she has autistic-like tendencies or could be similar to Autism Spectrum Disorder, or ASD.

That isn't something I really tell people all that often.

So there it is.

For everyone to see.

Most importantly, me.

I can't seem to wrap my mind around it.

Besides, I have learned and read all along that girls with Fragile X are typically higher functioning than boys with Fragile X.

So why is she my hardest?

Is it because I have always expected her to be easier than Brother, therefore I see her as being harder because she is not what I expected?

I have fought hard to keep her out of any Autism Classrooms because I see so much desire in her to follow those who have autism. It's as if she sees their habits and thinks, "oh, that would really help me out if I did that too." Not to mention that children with Fragile X Syndrome are mimicker's. Brother, as a 3 and 4-year-old could impersonate Harry Potter's accent and would do the English bow and the whole nine yards. He was quite the half-time show when we would have everyone pause to watch his impersonation when he said, "Harry Potter" in his English accent and then bowed. He could barely talk but he could do that without a hitch. He loved the movie and he LOVES british accents so he followed it. Sister is the same way but she tends to impersonate people in real life rather than in movies.

When she was first being placed in her current class environment I was very concerned because her classmates didn't seem to be as high functioning as her, but I was very impressed with her teacher so we went forward with her placement.

Within a month she started reading and is now reading books with 4 to 5 words a page and is approaching a first grade reading level. She is comprehending math using touch points and her writing is improving. She tested higher than she did previously, and not only higher that she was at previously, but her IQ was head and shoulders above the rest of her class.

Her teacher called me a few weeks ago and let me know that she is testing so much higher than her classroom peers that her team at school felt she needed to be placed in an Autism Unit classroom that would be able to help her thrive academically and also help her with her behavior issues.

I was panicked and scared.

She has been doing so well.

She has been thriving in her current class.

I can't have her in with children with Autism where she would follow their behaviors when I am already dealing with her own behaviors. How could they even think that this could be the right placement for her? My initial thought was, "Heck no! She is NOT going into an Autism Unit. She does not have Autism. She has Fragile X. Period."

But, then I thought about it and realized how Heavenly Father has really had a hand in everything that has happened in our lives these last 7 months and decided I should at least go observe the classroom and give her teacher and her team the benefit of the doubt.

Last week I observed the classroom.

All sweet children.

All diagnosed with Autism.

No one diagnosed with Fragile X.

Yet, it was like watching a bunch of little Sisters. So many of the same mannerisms and personalities.

It scared me.

This is exactly what I am trying to avoid.

At the same time, though, I felt a certain peace about the classroom, a sort of feeling of ... home.

I talked to Marc about it.

We mulled it over.

We prayed about it.

I went to the temple and prayed about it there. All along I didn't feel any real answer any different to what had been offered as an option and just felt a general peace that it would all work out.

Then Marc and I attended a transition meeting for Sister's placement for the upcoming school year.

I was scared and confused and nervous because my mind was saying to "fight" for what was right for Sister, but my heart felt at peace with whatever was to come. It was kind of weird.

As the teachers and staff sat at the table with Marc and I, I could feel my emotions coming to the surface. I have never been emotional at any of my children's transition or IEP meetings and wasn't about to lose my composure at this one. But, as we talked and her teacher laid out her test scores and explained how much more she was doing than her classmates and her possible "future" teacher explained to me all the benefits of placing Sister in an Autism Unit I began to get emotional. When I asked Marc how he felt he so simply and eloquently explained to those in the room, "I hope it is OK to say that, I often pray that our children's teachers and educators will be inspired to do the right things for our children and I hope that you, in turn, pray for our children and know what to do for them, " (I know, bold, right, Loved it! He goes on.) "I think that the issue here, may be, that Rachael and I are just scared for the change and the leap of faith that this placement will take for us."

At that moment I knew the Marc felt right about the placement with the Autism Unit for Sister and that we just needed to have faith that they also want what's best for Sister and that is what they are trying to do with this placement.

I think I mostly cried because I don't think I realized just how much Sister's Autistic-like tendencies were such a dominant part of her life, and ours.

Maybe Fragile X is all I wanted to handle.

After the meeting was over Sister's teacher approached us, not as her teacher, but as our friend and expressed how he felt that this placement would be really good thing for Sister as long as we stay in communication with the teacher and do our part in preparing her for the change. He then went on to explain that his own son has Autism and that he has seen such beautiful changes and improvements in his life with him being in an Autism Unit. It really put my heart at ease to hear that, not only was he Sister's teacher, but he was also a parent who sees the other side of it all too.

I am so grateful that we have so many wonderful people involved in our children's lives who aren't just there for the paycheck, but are there because they LOVE what they do.
She was outside playing with her friends and she wanted to show me one of her Power Ranger moves.

Sometimes the right decisions are not always the easiest.

That seems to be the theme of Our Life these last 7 months.

1 remarks:

Ethington Family said...

love you, Rach! thank you for sharing!