Saturday, June 19, 2010

What a difference a day, week, month, year makes

Three years ago I was in a total panic!

Maya was nearly 4 years old and about to start school and for the life of me we couldn't potty train her.  Nothing worked.  Not the videos, the sticker charts, the cute thingymabobs that turn colors when pee hits them in the potty, not letting Maya experience wet or poopy pants, nothing.  And in a few months Maya had to start school and be potty trained.  Leo and I were totally freaking out and we panicked, and then made every mistake in the book including punishing, yelling, threatening to throw out toys just to get Maya to go to the potty.

When I think back, that was the beginning.  The beginning of our own personal journey with autism.  Of course we didn't realize it at the time, we thought we just had a stubborn girl, who was not going to do anything until she was good and ready and that we were total morons because we couldn't get our child to do what was so seemingly easy for other parents.

So, October, the month of Maya's fourth birthday came and although she still wasn't trained, we pretended like she was and sent her to school.  It was a total disaster.  She wasn't ready, she didn't understand what was happening, we had chosen the wrong school and got the added bad luck of having a very crappy, insensitive teacher.  I spent the next six weeks panicking and in tears until we finally decided to pull her out of there.  Still, we saw that Maya was a little behind but just thought she might be immature for her age.  Still, we decided to have her evaluated.  She was only 4 and if there was a problem we did firmly believe it was better to catch it while she was younger and if everything was okay, then we would at least have comfort in knowing that, and besides, what was she going to miss in kindergarten, brain surgery?  It took a while to get her into an evaluation, we had to wait about 6 months while we put her back in daycare and tried to calm down and stop freaking out.  In the 6 months in daycare Maya matured a little bit while being in a totally familiar environment, her pottying got marginally better and we felt okay by the time we had to put her in an evaluation in a pre-school facility for special needs children (particularly autism, ADHD and the like).  Her 'school' for lack of a better term was a lot warmer, friendlier and kinder than the school had been so that did put us at ease.  Three months after the evaluation started we got hit with it.  Maya has autism, or more particularly PDD NOS (Pervasive Developmental Disorder Not Otherwise Specified).

We were of course shocked, sad, in mourning for the child we thought she was and scared about what she would never be.  On the one hand it was devastating but on the other, she was still the child we had loved and cared for from birth and the diagnosis didn't change that.  So, we tried to hold it together, to feel our sadness but not let it overshadow everything and to try and focus on our daughter and on helping her become the most that she can.  It wasn't as easy as typing this paragraph but I must say that I am grateful that I am the kind of person who can accept, I do think that quality has come in handy for us during the past few years.

A lot of people tell us that they do not recognize Maya as an autistic child.  She is verbal and affectionate and I think for most people those are the biggest indicators of autism.  She also does not have that 'autistic' look that people say they can recognize.  She also does not exhibit overtly repetitive behavior (like saying the same word over and over or swaying back and forth), although upon closer inspection she does exhibit some repetitive behaviors.  For instance, like having to arrange her toys by color, she does at times flap her hands and walk on her toes, although because it is not constant it is not so noticeable, particularly if you do not know these signs of autism.  Over time we have noticed too that Maya can produce more language than she truly understands (another classic sign, this is a type of language delay), she has trouble recognizing social cues, which means she has trouble socializing with her peers and she has some physical characteristics which are typically found in autistic children (Maya has a fine motor skills delay and her muscle tone is not where it should be for her age and size).  Still, a lot of these things are only noticeable to us because we know her very well and  because we understand the signs.  To most other people, she appears as a typical child.  On the one hand I am grateful for this, as it avoids people immediately labeling her or giving her those freaky or pitiful looks.  On the other hand when they hear that she is autistic, they often question it and us and our judgment based on the fact that she is not silent, beating her head against the wall or doing some sort of Rain Man impression.  I have over time learned how to deal with this and people are well meaning in this but in the end it is hard to be supportive of us or Maya if you are going to question the diagnosis.  We have unfortunately had to deal with the downright cruel as well, but thankfully that has been very limited and in the end, when people are cruel, that is their problem and not ours and it says much more about what is wrong with them than what is wrong with us.  A very close friend, and the mother of an autistic son said to me recently when I was really upset after one of these barbs talked me down and said that she and her husband know that they are in for a lifetime of criticism about their parenting and while these things always sting, they just try to remember that they are the ones that deal day in and day out with their autistic child and other people and their cruelty really have no place since these judges and juries swoop in with their judgment and go home to a full night's sleep without another thought.  Good advice and I am very lucky that I have the support of so many wonderful friends.  As my Meme used to say you have to take the bitter with the sweet.  And luckily enough our life is flowing with the sweet.

I will say that we were lucky that we have been able to get good advice that has worked for us. Parents of autistic children often go through years of trial and error to find a formula which will help their children.  From the beginning at Maya's school, the most important advice they gave us was that we had to be patient and not try to push development onto Maya.  What she does at school is hard work and therefore it was very important for us to create an environment where Maya could just 'be herself', where she could find comfort and security and not be pushed all the time to do things this way or that way.  They told us in very plain language that if we also tried to address Maya's issues directly at home it could hinder her progress in the long run.  Then Leo and I without really a plan in mind decided that the best thing we could do for Maya was to encourage her, to try and build her confidence because that would probably help her more than anything.  Helping her to feel good about herself, praising her accomplishments would hopefully encourage her to do more of the same, to keep striving and put aside her fears of trying new things or shutting down in new situations. Pavlov would be doing the hokey-pokey if he knew.  I think, that while we have faced criticism from well meaning people, that we should be pushing her more to do things other kids her age are doing (teaching her to ride a bike, giving her swimming lessons, drilling her on the alphabet and reading and numbers, etc.), that this formula has worked for us.  Maya, besides being autistic is definitely a child with her own ideas and there is no pushing her to do things when she doesn't want to do them.  Pushing actually most of the time achieves the opposite and actually makes Maya withdraw into herself much more where then it is extremely difficult to reach her.

If I look at the Maya we put into her school (called Kabouterhuis or in English the Woodsman's House) and the Maya she is now I see that she has come so far.  Two years ago, getting her dressed every morning was a struggle, Maya often ran around with us chasing after her trying in vain to slip a t-shirt over her head while keeping up with her.  I swear, if she keeps this up the NBA is going to want to talk to her about her footwork.  Now 80% of the mornings, she gets ready for school with no hassles, thanks to our encouraging her rather than alternately pleading and threatening her with time outs.  When she first started in school she could not stay seated in her chair, but always was getting up from the table in her class and roaming around, now she stays in her chair for the length of the activity and even joins in for a lot of activities.  Two years ago they couldn't even get her to sit in the circle to play games and now she does it enthusiastically.  Two years ago, she would scream, throw a tantrum or hide under the table when another child would approach her to play with or even near her.  Now she happily wants to play with other kids and is very  s l o w l y  learning how to do that.  I have feared over the past two years that Maya would not be able to learn how to read which I think has been my biggest fear of all, as literacy just automatically keeps a lot of doors closed.  Now Maya is really starting to learn her letters and although her teacher says she is still at least a year away from learning to read, they have no doubt that she will be able to read.  And mostly, her level of frustration and tantrums have significantly decreased because she understands more of what is expected of her.  I won't say that some days are not still a struggle, where fears and frustrations get the better of us (Maya, Leo and me included) but life does not have a continual black cloud of fear hanging over us as it once did.

Now in three weeks, Maya will leave Kabouterhuis, the place which has cared and nurtured her so well for the past two years.  Maya is familiar with the place, therefore she does very well there.  Her new school follows the exact same routine and teaching methods but is for older children.  Although I know that going to a new place will always be an adjustment for her, I do feel quite sure she is ready for it and will be able to handle it. I do have a little bit of fear that the kids there, because they are older might be worse off than the kids where she is now and that this might have some kind of negative effect on her, but we just have to see, maybe my fears stem also because the majority of kids at her new school are boys (since boys have a much higher incidence of autism than girls, autistic environments tend to be more male than female) and boys are rougher than girls, although I have no doubts that my Maya can hold her own.  Still, a lot of autistic children, particularly those who are not able to express themselves often experience a lot of frustration, which can turn into aggression if the right outlet is not found for the child (and finding the right outlet can take years with some children).  In our first meeting with the new school one of the first things they asked us was if Maya was aggressive and I had the feeling that they deal with their share of aggressive kids.  Maya has never been aggressive, I think partly because although she has language delays, she has always been able to express herself, therefore she is not 'building up frustration' on a daily basis.  I am a little scared though that if Maya is around children who are aggressive it can have a negative impact on her, that she might be scared or even emulate what she is seeing.  However, the children at her current school have a variety of problems and she has been around aggressive types before and that has never happened, so we are just going to keep a good eye on it and raise it as an issue if it happens.

I am sad that her time at Kabouterhuis is coming to a close but when I look at the sheer panic I felt just three years ago and how far she has come in that time, and when I think back on the last three years, it has been a journey of progression in baby-steps, but all totaled, they add up to a lot.  Each day she is further than the day before, each month, each year.  She has come so far, I just have to keep remembering how far she has come and just keep encouraging her and building her confidence.

One of the nicest things happened to us a few weeks ago.  Maya has been friendly with the children who live next door to us, a little boy and girl.  The boy is a year older than Maya and the little girl a few months younger than she is.  They have played together since they were toddlers.  Last year things started to go a little sour with the little girl, because Maya didn't listen and was 'wild' while the little girl wanted to play games and take turns, etc. which Maya couldn't do.  A couple of playdates did not go well and I have really feared that this little girl's mother would not want her girl to play with Maya since Maya caused the little girl so much frustration because for her, it was just not fun to play with Maya.  What a difference a year makes!  Since the kids go to different schools, in the winter they don't see all that much of each other because they don't play outside.  In the last month, as summer has approached. they are spending more time outside and wanting to play together.  A couple weekends ago Maya spent the afternoon at the little girl's house, swimming in their kiddie pool in the back yard.  When I went to get her, the mother of the little girl said to me that Maya has grown up so much in the last year and that the girls are playing together really nicely now.  Those words meant so much to me (and actually I heard them to the tune of We are the Champions).  I was happy for days!

Where three years ago, I was in a panic not knowing why my daughter was doing or not doing the things she was, now I can move forward to the next phase, with confidence.  I still don't know what the future holds for Maya or how far she will be able to go, but what I do know is that she will be able to make the change coming up with the help of our encouragement and support.  So, I am not panicking, I am calm and assured that my sweet, wonderful, kind hearted girl will keep moving forward.  


  1. Dana,
    Reading your journey as the parent of an autistic child is very touching. Teaching in a public school I have had the experience of working with students with varying degrees of autism. Reading your thoughts helps me to gain a better understanding of autism and the struggles that you, as a parent, face. It sounds as if Maya has a very bright future, she is blessed to have such wonderful parents.....Carol S.