Saturday, May 19, 2012

Trying To Have An Open Mind

As parents, we often pride ourselves that we know our children better than almost everyone.  We are told this by their teachers and we really know it to be true.  But every once in a while, something happens that makes you think twice.  There are times where others have a different opinion about things than the parents.  The hard part is trying to figure out who is right.

For Music Man, things have always been easy on this score.  What he does at home, he does at school and vice versa.  Yes, there may be some things that are slightly different, but we see the same things and are almost always on the same page.  For Ballerina, that doesn't seem to be the case.

For the second time now, her teachers are making a recommendation that I'm not sure I agree with.  The first time was when we were in our local Early Intervention Program.  They suggested that she needed an ABA program and suggested arranging for some 1-on-1 work through a local organization.  They commented that she was EXTREMELY rigid and the rigidity of the ABA program would suit her well.  My husband and I couldn't understand how this could work, but we decided to try it anyway.  And, let me tell you, did it EVER work!!!!  She is probably one of the many poster-kids for the success of ABA.  And this taught us to listen to what her teachers have to say, even when it doesn't mirror our opinions.

We are now faced with something similar.  Ballerina's kindergarten placement.  She is currently in the most intensive program offered by our school system (an ABA program with a 1-to-1 student teacher ratio).  She started here on her 3rd birthday (so over 2 years) and she will be entering kindergarten with the new school year. 

There are several different placement options for her.  My thought is that she would be placed in a special education classroom and would spend the next year learning to participate in a general education classroom.  She would start off going there for 30 minutes a day and by the end of the year, it would be for the full day.  But the school representatives recommend that she be placed in a typical classroom from the first day of kindergarten.

Don't get me wrong.  This placement recommendation has me WHOOPING for joy on this inside.  It really is a dream come true.  From Day 1 when we started working with the school programs, I was hoping both of the twins would be ready for a typical classroom for kindergarten.  But now that it is potentially becoming a reality, I'm scared.  Terrified.  Panicked.  I don't know if this is the right thing to do.

First of all, we know from experience that she experiences regressions during the summer.  Where it takes a typical student 2-3 weeks to return to where they were the previous school year, it takes her 7-8.  This is why she is awarded the recommendation to attend ESY (Extended School Year) during her annual meeting in October (normally, they don't begin awarding these recommendations until February).  Second, she will be going from a 1-on-1 environment to being 1 of (upwards of) 18 students with a general education teacher who does not necessarily have the added training of working with an Autistic child.  And, finally, I worry because she is my baby and I'm the Mommy.

I went to visit her at her school recently and was amazed at what I saw.  In order to assess whether this recommendation reflects my daughter's best interest, she has been participating in a typical kindergarten classroom for the last couple of months.  She goes there for an hour every morning (and they are in the process of increasing it to last the entire morning).  When I visited, she knew I was there and she looked just like everyone else.  She sat in her square.  She did what was asked of her.  She listened to instructions.  She has even made a FRIEND!!!!!!

So, now I'm torn.  I don't want to hold her back.  I don't want a diagnosis to hold her back.  But I don't want to push things too far too fast.  Every fiber of my being says that she should start the school year in a more protective environment and then be given the added freedom as she makes the adjustment.  But after what I saw, I have to concede the possibility that the school representatives may again be right about what we should do for her.  Her placement meeting is at the end of the month and we will make the best possible decision at that time.  I'm just so grateful that we have been given such a supportive team who are willing to work with her and with us to maximize her potential!

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Ilene is a SAHM living in the Washington, DC suburbs.  She lives with her husband, puppy and 3 wonderful children.  Big Brother is 7, and the twins, Ballerina and Music Man are 5.  She learned that both Ballerina and Music Man were "On The Spectrum" when they were 26 months old.  They were officially diagnosed 5 months later with "Severe Autism".  Ballerina has since been diagnosed with ADHD and POTS in addition to Autism.

They have both made such amazing progress in the last 3 years.  Ilene blogs regularly to chronicle the family's journey at My Family's Experience With Autism writing whatever feels right at the time.  She calls it her "publicly available online journal" and she invites all to read and share.


  1. Wow, first of all I am thoroughly impressed at the efforts and level of support from your school district and what they have to offer! I have 2 children on the spectrum, 1 16 yr old with Aspergers and a 7 yr old with autism (both boys) in addition to my 14 son with cerebral palsy and 9 yr old daughter with ADHD. We live in NY, but hearing that makes me want to move to DC, LOL. I have been in the same situation your struggling with and let me tell you it never gets easier making those decisions. They are our babies and our first instinct is always to protect them. But it sounds like she responded positively and you may want to try it and I have found that early on is always the better time to attempt pushing them a little to see what they are capable of as when they get older and academics and social situations get more challenging there is a LOT more risk to those attempts. Now, if it turns out that it is not the best situation you can change her placement and she will bounce back better then if she were older. Just my experience, but as I am sure you know every kid is different regardless of similar diagnosis and only you know what is best. I will tell you though that I am familiar with summer regression (my youngest on the spectrum gets summer services but not as intensely as during reg school year but it takes him a few weeks in the beginning of every year to adjust) so don't be disappointed if she struggles a bit more than you would like the first few weeks of school to give it a chance. Good Luck! :)

    1. Thank you for commenting!

      Overall, I have been very pleased with how involved our kids' teams have been. They regularly make suggestions and these have proven to be some of the best ideas we have seen. They have worked with Ballerina to make her program continue to work despite the fact that she has pretty much stopped the ABA which the program is based upon. They have been spending most of the time trying to integrate her into the general population rather than keeping her in the special education preschool corner of the school. I have no complaints! And I can't be too upset that we aren't on the same page at the moment -- it is these times that mean the most because we can work together to make things happen.

  2. I so wish your school had some programs we have here in NYC. First off many schools - including the one my non-autistic son attends - have some integrated classrooms (1 or 2 at each grade level). These have a team of teachers - 1 gen ed and 1 Sp. Ed. - and no more than 50% of the class population have IEPs. And then for spectrum kids who need more help than that? There is a program called "ASD Nest" in which only 1/3 of the kids have IEPs, the Sp Ed. teachers are specifically trained to work with kids on the autism spectrum and there is a greatly reduced class size (12 for K and slowly rising to 18 by 3rd grade). I have friends whose kids are in this program and it's awesome.

    Is there any way you could campaign for your district to institute integrated classrooms with team teaching? It sounds like that would be the ideal situation for your daughter. Good luck whatever you decide for her.

    1. Thanks for commenting!!!!!

      I can't look too far ahead (or I'll lose my head), so I'm only familiar with the elementary school model.

      There is integration between the 2 programs I talk about here. The special ed classroom has specials, lunch, and other scattered activities with the kids in the typical classroom. For the students who can manage it, they can go into the (for kindergarten, adjoining) classroom (on their own -- no support provided) and work with the typical classroom students and then return to their assigned class.

      The class size for K-2 at this school is reduced for the typical setting to 18 per class (maximum) to 1 general education teacher. The special ed class is limited to 12 kids with 1 teacher and 1 paraeducator (if the number of kids is higher, they add a second para).

      I think this is about as "integrated" as I'm going to get. :(

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  4. Thank you so much for reading our story. Ballerina's placement meeting was today and it went VERY well. We made the decision to place her in a General Education classroom and give her the chance to thrive there. We will be meeting again in early October to discuss how she made the transition and work out any snags that may have arisen. If you would like, this is the post I wrote about the meeting. Thanks again for listening!