Wednesday, October 20, 2010

The Autism Two-Step

Two steps forward, one step back.  So it goes.

After two and a half months at her new school, we finally had a meeting yesterday to hear their observations about Maya and how she is doing.  As always in these things it is a mixed bag, there is always a part of these "State of the Union" meetings which is sad and depressing, as you again are faced with all the problems your child has and how far away they are from being a 'neuro-typical' kid. On the other, I always try, in between my tears, to look at how far Maya has come and use that as my measuring stick instead of my dreams and wishes for her to be a "normal" child.  Two years ago in a new environment, she would have dealt with the difficulty by throwing tantrums, taking her clothes off and hiding under the table all on a regular basis.  We have had very little of that at the new school and that is something.

As I have mentioned in other posts, this new school has taken some time to adjust to, particularly for us.  First of all it is a much larger organization than the other school so it has less of a personal feel to it.  I do think that by and large it is very well run but I must admit that both Leo and I miss the personal feeling of the old school, where everyone knew you and your child by name, even the teachers in the other classes.  This is a much larger organization, and actually it it two organizations being run simultaneously (the school and the therapeutic organization) and they don't always communicate with each other as much as they should.  Leo and I have more than once been on the receiving end of them not communicating information with each other.  Case in point:  last Friday they had Maya's birthday party in her group and we were told to come to the school at 11, take her out of the class and go to the group and have her party with the other kids and then we could take Maya home.  When we got to the school, her teachers had no idea that Maya would not be coming back in the afternoon.  These things, were always handled more seamlessly in the old school.  You only needed to communicate to the group, and they would communicate the necessary information to the school and vice versa.  Also at the other school, we were engaged in a thorough family counseling programme, where as parents we could discuss our challenges, feelings and problems with a counselor who would listen, try to offer advice and comfort to keep us as parents moving in a positive direction.  Although in principle we have a family counselor at the new school, there seems to be very little there to engage us, they only want to use this process to pass us information and the counselor does not see Maya on a regular basis, so even after two months she doesn't have any knowledge of her other than what she reads in reports, and like everything else the communication between the school, the group and the counselor is not streamlined, so we spend most of our meetings informing each other from the various streams.  I must admit I was not very encouraged the other day when I was walking through the school campus with Maya and saw our counselor and said hello to her and I could see on her face, that she didn't easily place Maya or me.  Still, even with all of this I do think, on the one hand that overall they are a quality institution (I am very happy with her school teachers who seem to understand her well enough) and also that for Maya this is a necessary junction on the road to education, we need a recommendation from them to let her take the next step, so I am trying hard not to be overly harsh and judge them based too much on what we experienced at her last school.  I think we were extremely lucky there and that place may well be the exception and not the rule.

Yesterday's meeting was an outcome of a two month observation period where they have observed Maya and tried to get a handle on who she is, what her problems are and what her needs are.  More or less their observations are in line with the reports from her former school with little variations here or there.  There is still some question as to where her cognitive abilities lie, she has been tested in this school and in the last and she still tests under the 'average' although now that Maya is 7 she has to be tested within the regular IQ tests and not the tests meant to measure IQ geared for preschoolers. These tests are more question and answer rather than intelligence tested through play exercises.  The school said that Maya was very difficult to test as the method is difficult for her to succeed in, therefore they suspect that her score is lower than where her cognitive abilities are (her school teachers estimate that she may be in a higher IQ range than where she tests but that due to her problems with the testing, this is difficult to assess and these tests are the only recognized method in the Netherlands), so at least for now we have to live with a slightly below average IQ.  Not easy stuff to hear and while I don't discount it completely, I do not let it IQ be the measure of all.

Their conclusions were not at all surprising as Leo and I are well aware of her problems and they have been well documented by her former school and the new school's observations are consistent with that.  They do feel though that the length of the school day is having a negative influence on her.  At her former school the hours were shorter (school started at 9.00 and ended at 3.00 PM) in general and Maya spent 3 mornings per week in her classroom and the rest either going to various therapy appointments or in her peer group.  At the new school, Maya first goes to school from 8.30-11.30, then has lunch in her peer group and then from 2.00-4.00 PM she goes back to school.  This means that Maya leaves the house around 7.45 and often does not get home until 4.30-5.00 PM 5 days per week. (this means she spends 37.5 hours per week at school as opposed to if she went to a regular school she would spend 26.5 per week at this age)  Her teachers have said that the afternoons at school are just too much for her and that her concentration tapers off significantly in the afternoons.  Therefore they recommend that we cut back her time at school.  They propose that we cut her back to 27 hours per week which will mean that she will have Wednesdays off (they highly recommend that she have a day off in between to rest and gather her energies) and that on the other four days she will leave school at 3.15 PM instead of 4.00 PM.  I do think considering where she came from in terms of hours spent in school, that this was too huge of a jump to make and I am more comfortable with the other schedule.

The other change they suggested was to make a change in her peer group.  In her current peer group, she is with kids who are her age or a little older, but this has not worked out well.  Maya is developmentally at the age of a preschooler still (they chart her developmental age at around 5.5 years) and Maya is having a hard time following the stricter routine.  Plus since the kids are older, Maya's disruption to the group is causing them difficulty as well.  Therefore they suggest that we put her back in a preschool age peer group, where there is more attention and where the rules are less strict, similar to the peer group she had in her former school), where there was more room for each child's individual approaches to things.

While both recommendations seem reasonable to both Leo and I (we had concerns at the outset about both of these things to be honest), still as a parent, it stings when you hear your child isn't making continual progress.  For us I think even more so because in the last year at her other school, she was really making steady steps forward (they were small steps to be sure, but still moving forward), that I do think Leo and I have crashed a little in seeing that she is stalling now.  I do think it also has to do with the newness of the school.  Even in her old school it took 6 months to a year before she started to show any measurable progress, maybe we just need to give her that time.  The irony is that during our first meeting with our family counselor we were informed that in principle Maya can only stay at this school for 6-9 months and then she is supposed to go to another school.  This was a shock to us as we were lead to believe that Maya would be at this current school for 1-2 years and we raised the concern that 6-9 months there would not do anything at all to help Maya progress because she is a child that needs a L O  N  G time to adjust and feel confident to come outside of her zone and take developmental steps forward.  Their answer was to let the observation period finish and then "see" which is the process we are in now.  Yesterday they told us that it might be possible for Maya to indeed move onto a more permanent school environment next year but then maybe combine with a peer group environment at this facility where she might go 3 days per week to school and then 2 days per week be in a peer group.  As with everything about the future with Maya we try not to put the cart before the horse and just wait and see and make the best decision possible for her.

So, as much as it hurts to sit in a room and hear experts talk about your child's problems and to have that little voice in your head sounding off like a distant fog horn, full of your hurt, disappointment and fears for the future of your child.   I always try to tell myself that she has come such a long way and even though it's hard to have the reality checks and to have your fears reawakened over what will be with her, how far she can go, etc. I just always tell myself that she is a happy and healthy kid and although she may only be taking the tiniest baby steps, for her she is sprinting along courageously in a most grueling of marathons, with unseen obstacles to overcome at every turn and through it all, she still remains our happy, joyful child, full of life and full of hope.  Therefore we just try to create a loving and secure environment for her at home, where she can be herself completely, be happy with who she is and hopefully gain the confidence to break herself out keep taking those steps.

Not easy, but even though we have to take a step back now, we are so proud of her!


  1. I'm sorry that neither you/Leo, nor Maya can have any certainty about where she will be going to school once her initial observation period is over at this school. Sounds very disruptive. My kids would go nuts if they had to go to a new environment every year. Karen's been in same gan, same teachers and many of the same friends for 3 years now. I can't imagine how much more difficult it will be for Maya.
    You are doing everything you can for her, and it sounds like the system is also working with you as well as it can. Baby steps are still steps, and I don't see where you see the "two steps back" part. Yes, she's going into a group with younger children. But it may also help build her confidence. Karen is a lot more confident, now that she's finally one of the "big kids". So it may be part of confidence building for Maya too.

    Too long days also have a detrimental affect on my kids' abilities to function socially. I just took a job that offered me the flexibility I need to be able to pick them up earlier, rather than later. Not everyone has that option.

  2. Thanks for the comment Lita. I meant the two steps back as kind of a metaphor. She is doing well but did not measure up to the educational plan. Don't worry I am not viewing it as a defeat. I am much tougher than that!