Saturday, August 28, 2010

Just Keep Swimming

Ok, it's been about a month since Maya started at her new school.  I don't know how many of my FB friends read my blog, but a lot of them have been asking how Maya is doing so I thought the one-month mark might be a good time for me to collect my thoughts.

While there are a lot of similarities with the new school compared to her former one, there are a lot of differences too.  For one Maya is now one of the youngest children there and she looks again so tiny.  At her old school (which was really for pre-school aged kids) she looked so big and towered over everyone, and now everyone is towering over her.  This is a natural thing any time any child goes to a new school, of course, but still it is a bit different to see right now.  Still, I sometimes get a nudge when I see Maya with these older kids, thinking, my girl is too little for to be around kids this big.  The other thing is that Autism really is an (old) boys' network and I feel that much more prominently in this environment than in her former school. I see very few girls when I have been there.  Autism is of course more prevalent in boys and at her old school there were always more boys around, but there were still enough girls where it didn't feel so dominated by boys.  I can't quit having images of Maya being the only girl in the boy's locker room or something.  I am not sure if there are other girls in her class.  In her group (I'll explain the difference in a minute), there is only one other girl.  I try to look at it as a positive thing.  Maya has always gravitated toward boys (just like her mother, insert your favorite snarky comment here).  The few friends she has are nearly all boys, so maybe I should stop thinking about this so much. I must say I was kind of pleased one morning when I took her there.  She was walking to her group with the other kids and her teacher and one of the boys in her group who has a good 5 inches and 10 pounds on her started running and Maya followed suit and passed him easily.  My girl can definitely run (she definitely didn't get that from me, or Leo).

Many things are similar at this school as in the last school but there are a lot of changes too.  Both schools are a combination of school and therapeutic center under one roof. A kind of one-stop-shop.  The formula is that your child spends part of the day in school and part of the day in their group and periodically they have whatever therapy appointments they need.  Common therapies for autistic children include speech therapy, physio therapy, play therapy, plus there is of course psychologists and psychiatrists on staff, in house pediatrician, etc.   The basic structure is the same as well.  Both schools consist of two different environments for the kids, a class (which was school both a class (school) and a group.  The group is kind of like a class, they also learn things there but it is not focused on classic school learning (the three R's) but is an environment where the kids can be observed by the teachers to gain a better understanding of their needs and how each child can best be helped.

While there is a common curriculum (based on the Netherlands special education regulations), each child learns at their own pace.   Autism consists is an aggregate of developmental delays in different areas and each child may have a different combination of delays and at different intensity.  Autism is also frequently combined with other types of disorders such as ADHD, Epilepsy and also you frequently see that cognitive functioning can also be affected.  In the past the experts thought that autism was a form of mental retardation and not so many decades ago, institutionalization was the only option.  However, as we have grown to gain a better understanding of autism this notion has evaporated as many autistic children also fall within average or above average cognitive development.  And even those who may fall below average cognitive functioning, can be advanced in many areas.  Therefore educating these children is extremely difficult.  There is no one-size-fits-all approach.  I read once that autistic children are like snowflakes, each similar but no two exactly alike. I've always loved that analogy.

Each child spends a certain part of the day in the group (and going to their various therapy appointments) and in school.  The teachers are certified special education teachers who have specialized in autism.  Maya is very familiar with this structure of course and is used to going back and forth between school (she translates it literally from the Dutch, so she calls it the school class) and the group.  So the familiarity of the structure has done a lot to make this step easier for her.

Even though the structure is the same, the routine and the expectations are quite different.  At her former school Maya spent much more time in the group than in the school class.  The group was the 'home base' for the kids.  Actually for the first 8 or 9 months at the old school, Maya didn't go to the school class because she wasn't ready for it.  Then she slowly started going, first for just an hour or two and as time moved on, she spent more time in the school class, slowly building up to 3 half days per week (with the rest of the time spent in the group).  This doesn't sound like very much, but Maya took such a long period to adjust, we literally had to increase her time in increments of a half hour or so, so we were extremely proud to build to 3 half days.

In her new school, the school class seems to be more like the home base.  She spends much more time in school than before and it is expected to be this way.  They don't use the 'slow build up option'.  Well actually there is the option, but they start off first with the intended period of time and only when that doesn't work, they scale it back.  There just seems to be more of an expectation and less of a 'let's let Maya set the pace' kind of approach.  This is somewhat unfamiliar to us and of course the unfamiliar can also cause apprehension and while in my guts I think she can handle this and that it is also good for a child (or an adult) to aim higher, it is still somewhat foreign to me and I have to get used to it.  The school day looks something like this:

  • Arrives at the school class at 8.30 and stays until 12.00 (in between there is a snack time, recess, etc.)
  • At 12.00 she goes to her group in the other building and has lunch, some days has therapy appointments, etc. and a recess.
  • At 2.00 in the afternoon she goes back to school for an hour until 3.00 
  • At 3.00 it's back to the group. Two days per week she goes home at 3.15 and the other three days at 4.00, so on the longer days that last hour is filled up with therapy appointments quiet play, or recess.
  • Also one afternoon per week she has swimming lessons geared toward autistic kids and two afternoons per week she has 'gym class'.   

Common to both schools also is the idea of the integration between parents, child and school.  In this school, as in the last one we have a 'family counselor' who is like a case worker.  She is not one of Maya's teachers but is heavily involved and a frequent visitor to both the school class and the group.   We meet with her once a month to discuss how Maya is doing, she is there to answer any questions we have and she is also there to help guide us in our parenting and so that we can create a consistent manner both at home and at school in dealing with Maya (which is of vital importance).  It is so integrated that the family counselor usually visits you at home a couple of times just to have an idea of what the child's home environment is like.  It is all done very professionally and admittedly Leo and I learned a lot in this process in teh other school.  We were doing things that we thought were good for her and without realizing it, we were sending her mixed messages, etc.  The family counselor will also listen gratefully to your fears or doubts about your child.  I've cried more than once in her office.  And part of their job is to listen and understand also what we as parents are going through and to help us channel our fears and doubts to help our child.    So, in her old school this process was extremely helpful for us. Actually coming Tuesday we have our first meeting with our new family counselor and I look forward to this process beginning again. 

Some things which are different are that at Maya's old school parents were encouraged to come and see their child in the environment.  They encouraged you bringing your child to school as much as possible and the routine was that the parent was to enter the group with their child and spend 10-15 minutes there, either playing with your child, letting your child show off their work or having coffee with the teachers.  You were also allowed to come and spend time during the day in the group as well.  You couldn't do this often (because it can be disruptive to the kids) but it was nice to see how the group works for yourself.  In her new school parents are basically not allowed inside unless specifically invited.  When you bring your child, you bring them to the reception area and the receptionists call the class and one of the teachers comes to get the children and escorts them to the school.  The reason for this is because, although this is not a big issue for Maya, many autistic children cannot handle even the slightest change in a routine and having parents around in the class or group can cause stress for the children.  It is a totally logical reasoning which I do support, however, it is strange to me, after so much involvement at the other school, that I have only seen her group one time and I've never seen her school class or met her teachers.  Parents do get invited for parent teacher evenings, so you do meet them eventually but coming from an environment where parents were very much a part of the routine, this feels a bit awkward.  Still, Maya is not bugged about it at all so I think it is more mommy worries than any real issue.

The other difference is that you definitely see that the kids at this school seem to have more intense problems than at Maya's former school.  I am not sure why that is, if the selection process is different at the two schools or if what I am just seeing are older kids whose problems have intensified with age but although I am trying to remain relaxed about it, I must admit it does worry me a little.  On Tuesday morning I had to go to the school to fill out some paperwork (because although the group and the school are integrated, they are actually two different organizations) and they gave us the school handbook, calendar and explained a little bit about the school and how it works and what the plan is for kids who are just starting there (first six weeks is strictly observational, after six weeks we will sit together with her teachers and develop an educational plan for Maya).  The school is a lot bigger (although class size is still small, 9 kids with 3 teachers and an assistant for each class.  So it is a busier place with kids going here or there with teachers.  One thing I liked was that no child there was without an escort, so even if they have to go to the bathroom someone comes with them.  But still, at one point we were sitting in the lobby filling out our forms and you could hear repetitive screaming from a child in one of the nearby rooms, after a few minutes a door flew open and a boy of about maybe 10 came running out and was rocking back and forth and screaming and flapping his arms (all typical autistic behavior).  A teacher was with him and was very calmly trying to talk to the boy to help him calm down and after a few minutes the teacher took him outside in the square where the playground is.  It turns out that this boy's mother was sitting in the same group with us.  The woman who was talking to us asked her if she wanted to go and be with her child and the mother said she would wait and see what happens.  I felt so sorry for that mother, how difficult it must be for her to see her child like that and how excruciating it must be to deal with that on a daily basis.  At that moment two thoughts came rushing toward me.  What I am dealing with is not even in the same neighborhood than what this boy's parents are and although I felt a lot of compassion for that mother, I was selfishly grateful that this is not Maya..  But the other thought which came and stayed with me all day was a question wondering what the effect is on Maya and her own development if she is around this on a daily basis.  Can it have a negative impact on her, or maybe it can have a positive impact as well, that Maya will be able through these experiences to develop compassion for those who are different.  That is also as much a possibility as the former, but still a feeling of sadness came over me and stayed with me for the day, that again my daughter does not have the ability to effortlessly move through her childhood.  Certainly, she is not this boy or others who are locked up, unable to speak or communicate without extreme difficulty, but she still is one of these children with her own set of circumstances and challenges.  She is not able at this stage of her life to be educated in a typical school and meet those milestones, fear over what the future holds for her, etc.  I think all parents worry about their children, about what they will be, what kind of person, what will they choose for their own lives, etc.  That is common no matter whether your child is typical or if they have a physical, mental or emotional challenge.  What is different for parents of children with special needs is that  you are constantly wondering if your child will grow up, be able to take care of him or herself, can they work, earn a living, own a home, live on their own, have a family, be a parent.  It's a different worry altogether and although I really try to not to think too far in the future, to worry about now, this year and go step by step through each stage and hope that all these puzzle pieces will somehow each fit in their own place and make a beautiful picture.

Even at Maya's old school I was not free from my worries and fears for her and I had my moments of fears and sadness and doubts.  But she was always moving forward, sometimes with microscopic baby steps and that has calmed me (most of the time).  In her new school, at least right now seeing my daughter together with children with more intense disabilities, somehow that fear has again moved to the front.  I am trying to look at it rationally and trying to do what I have always done, focus on Maya, on building her confidence (because I firmly believe that is a big key to unlocking her capabilities but also preparing her for a healthy life).  But it's there for the moment a little brighter than before. 

Despite all this, I am happy to say that Maya is handling the change very well.  We have not seen an increase in outbursts or sadness or clingyness (which is usually her signature in these situations).  She has been just herself.  I think she is just coping with it.  OK, she is wetting her pants a little more these days, but I think that is more because she is too unfamiliar with the teachers and won't ask them yet to go to the bathroom but at home her patterns have not changed, so I don't think it is "emotional incontinence".  So I am not worried about it. Each day she says school is fun and she likes it.

Maybe I am the one who needs time to adjust.  I am reminded of Dory's best line in Finding Nemo "...just keep swimming....just keep swimming!"


    1 comment:

    1. I really like how you are able to candidly express your fears. I can't imagine how frightening it is to you, her mother, to see a much more disabled older boy in distress. But I also do the same mental game when comparing my children, and their difficulties with others from similar backgrounds.

      It does sound like she is doing really well from your description. If you continue to feel that the environment isn't helping her, or that it may instead bring her to a more difficult place, maybe there are other programs that enable you to place her in a mainstream educational program at some point in the future.