Monday, December 28, 2009

Maya and the Autistic Raincoat

I make no secret of the fact that I am raising a daughter who has been diagnosed with Autism.  Before this diagnosis, I thought Autism was something which caused those affected to either have savant-like abilities or to bang your head against the wall. What a difference a year makes!

Maya has PDD NOS and in the Netherlands they never say that your child is high functioning or not, they just don't put it that way.  And after spending loads of time checking out every article and chat on Autism speaks I must say that I am a little grateful for the Dutch approach because really, what does it matter? Your child is afflicted with a developmental disorder.  

When Maya was diagnosed on the autistic spectrum, my husband and I of course went through a grieving cycle which encompassed all the stages of grief, from denial to finally acceptance. I spent a lot of this cycle combing the net for information on autism and while I did gain a greater understanding of what it is and how it can affect children and adults,  I also think there is a lot of mis-information out there too. After spending a few months on the parental forums night after night combing for information and finding people who are going through similar things as me, I found as time went on that these forums frustrated me more than helped me.  I think the forums are a positive thing but, and I am trying hard not to sound like an elitist swine here, but I started to find that many of the parents who are regular contributors to these forums fall into one of three categories:

1.  Parents who have just received the diagnosis and are looking desperately for support, help, information to try and make sense of what their child is going through and how to help them.  These are the questers.

2.  Parents (and maybe others) who have subscribed to one of the oodles of schools of 'thought' out there about autism and are there to hawk their beliefs the same way that some very religious people out there think that their beliefs are the only ones out there and everyone else is wrong and damned.  They sort of remind me of  very religious people who are so fervent in their beliefs that it blinds them to other beliefs and they start to think that their belief is the only thing out there.  For instance, there are the Autism is caused by immunization people, the gluten free diet people, the ABA (applied behavioral analysis) people, the medication people, etc.  and many, many, many others, tons of which I am probably not even aware of. These are the hawks.

3.  Parents who are just overwhelmed by their situations that they cannot step out of what is happening on a day to day basis and try to analyze their situation and try to figure out rationally what they could be doing to help their child, their relationships with their other children, spouses or other family members.  These are the venters.

Now, for me personally, I don't fit neatly into being a quester, hawk or venter.  Therefore the sites and forums just started to frustrate me after a while.  I am not judging the questers, hawks or venters but I just felt that if I continued on the forums I would probably get sucked into one or all three of these groups and that probably wouldn't do much to help Maya right now.  I don't want to denigrate the forums because I do think they can be helpful and a good resource for people, but for me it's not the right thing.  I also think that Maya's situation (at least now) does not compare to a lot of other childrens'.  I think scores of other parents, many of whom are regulars on the forums are dealing with situations far more difficult than mine and do not have access to appropriate services or do not have a good support system.  I don't fault these parents for falling into these categories, I just think the forums are not for me.  In a way, I guess I have stared my own one sided forum via my blog.  OK, I admit it, I am a hypocrite (admitting it is the first step isn't it)?!

For the moment, I am quite happy with the services in the Netherlands.  Maya is not yet attending an 'official school' but what they call in the Netherlands a Medical Observation and Research Center (which sounds a lot more intense and scary than it is)  Very simply, it is just a school where the kids are put in very small groups (8 max with 4 teachers) where each child is observed and a complete analysis is made of your child and their problems and they spend a period of time (1-2 years) having these problems treated in a pretty intensive manner via various professionally recognized therapies and at the end of the period, they give you advice as to what kind of educational environment would be best for your child, given their particular set of circumstances.  The kids are in very small groups and get tons of personal attention and their teachers really get to know their child.  Everything is on site (pediatrician, speech therapy, play therapy, physical and occupational therapy, psychologist, psychiatrist).  They offer parents help, guidance and counseling to try and provide as much assistance to parents coping with an autistic child and to try as much as possible to ensure that home and school are consistent environments.  Maya has been there now for a year and a half and she has come such a long way in that period.  It's amazing to speak to Maya's teachers about where she is now compared to where she was when she came there.  I must say it is a pretty great place although since it is not a school, there is no real educational traject, I mean your child learns things, but there isn't a curriculum like you would find in a school, so Maya is not yet hitting any educational milestones, therefore at the right time, she does need to transition to school.

There is still though not a lot of clarity about what the best next educational step for Maya is and we are about to engage in letting Maya be observed by a specialised diagnostician to try and help us.  So, we are not sure what the next step is, and I must say I have heard some less than positive things about the various special education options in the Netherlands and I am a bit afraid of what happens when she takes the next step.  But one thing I have learned during this relatively short journey is that thinking too far ahead is not usually that productive. Oh, and did I mention that I have to navigate all of this in Dutch? 

For Leo and I, I cannot say we have not experienced our sorrows, fears and doubts and continue to do so but one thing I am really proud of us for is for trying to just focus on Maya each and every day.  We do what we can for her and I think the most important thing we can and do give her is positive reinforcement and we try very hard to build her confidence by trying as best we can to lavish her with attention and love.  We really try to praise her when she tries something that she is afraid of or when she does something positive or reacts in a positive manner no matter how small.  I cannot say we are 100% successful all the time because like any other parents we have our good days and bad days and there are times when our frustrations get the better of us.  

Maya is a child who thinks well of herself and I think (and that has been backed by her school) that has had an enormous influence on how well she is doing.  We are just so proud of her!

While I certainly would not wish anyone to have a child with autism, I must say that there are certain traits that Maya has, that can be attributed to her autism that I am grateful for.  While I recognize that autism will be a lifelong challenge for her and we are not quite sure how much her autism (or more correctly PDD NOS) will influence her later life (in terms of education and what she can achieve), there are things that I am strangely grateful for. 

Maya certainly has problems socializing with her peers.  At age 6 her social world should start to take on more importance, but with her peers Maya is still very much like a toddler or young pre-schooler.  She wants to play together with her friends but it is difficult as she cannot follow age appropriate activities, has trouble carrying a fluid conversation with a kid her age and does not pick up on social cues.  Therefore kids who have been friendas as babies and toddlers now easily get frustrated with her and don't want to play with her.  As her mother, when I witness this, it breaks my heart and gets my tear ducts flowing, but Maya takes it in stride, never feeling the rejection or sorrow.  Granted this is because she doesn't understand what has just happened but for me, as her mother, I am sometimes grateful for that lack of understanding.  At the age of 6, kids start to become deeply influenced by their peers and their idea of self is largely formed by whether or not they achieve acceptance or rejection from their peers (and of course their care givers).  Because Maya cannot read these cues, her sense of self is not affected by these frustrations.  She recognizes when a friend gets angry with her and feels sad or confused when the result is that a child doesn't want to play with her but she doesn't take that anger and frustration inside of her or it doesn't erode her self confidence.  She may have a lot of significant delays in her development but her sense of self worth at age 6 is strong enough to have a sense of who she is and does not allow her own view of herself be influenced by negative reactions of others.  Part of this is because Maya thinks in a very compartimentalized way, part of it is that she is somewhat oblivious to social cues and part of it is that she just doesn't always understand when someone is frustrated that it has something to do with her.  But whatever it is, it shields her like a raincoat and I am so grateful for it!

I am not sure what the future holds for Maya. Above all, I just want her to achieve as much as she can, whatever that is and while I hope her socialization abilities do improve over time, I hope that she will keep her 'raincoat' on. 

1 comment:

  1. Thanks for sharing your blog with me. My eldest, who is 8, has an array of disabilities that have made her young years a challenge both for her and for us. But by advocating for your child, giving her love and encouragement, and keeping a cool head about all the theories and mishegoss that's out there, I am confident that you and Leo are being the best parents for Maya. Kol hakavod!