Showing posts with label school. Show all posts
Showing posts with label school. Show all posts

Wednesday, November 27, 2013

Living on Borrowed Time

Your days are numbered Girlie!

Of course I am talking about Maya.

Tonight, she walked into my room, like she's done ten thousand times before with a book in her hand and I am ready for her to ask me to read to her.

She stood in front of my bed, saying nothing.

OK, you look like my daughter but you are not chattering a mile a minute, telling me of how hard it is to get the Hedgehogs to go to sleep or talking about how Thomas and the Engines are being naughty.  

She's still standing there silent.  And I immediately think of Invasion of the Body Snatchers.

Finally I say to her, "whatcha got there, Maya?"

"A book."

"Do you want me to read you a story?" I say.

"No, it's a Dutch book."

Ok, flag on the play.  Maya being autistic and loving structure hates it when I speak Dutch.  I have always spoken English to her and her father has always spoken Dutch to her, and for her, that's the way it is.  It can't be any other way.  When she was younger, she would cry if I would speak Dutch to her teachers or to the telemarketer who was trying to sell me a food dehydrator.  Now that she is older she has gotten the concept that I must sometimes speak in Dutch to other people, but if I say even one word to her in Dutch.  I get ENGLISH and often a few complimentary foot stomps.

On her birthday it's so bad that we cannot sing her a birthday song, because she hates hearing Leo sing Happy Birthday and hates me singing the Dutch equivalent Lang zal ze leven.  

Autism.

Anyhoo, me reading a Dutch book is completely out of the question.

So Maya's standing there, book open to a certain page looking at it.  I ask her what story it is.

She says it is not a story but a song book.  So I said what song, and she shoots off the Dutch title.

"Lemme see," I say.  She brings me the book and sure enough that was the song, but the funny thing is, there were no pictures on the page, only the title written and the words to the songs, there were some butterflies on the page but the song had nothing to do with butterflies.

No other possibility except that she read the title to know what the song was.

I stayed calm, because when I get all excited about milestones, I lose her, so keeping my voice calm and even (a first for me), I asked her if she read the title of the song off the page.

"NOOOOOOOO, I told youuuuuuuuu, I don't know how to reeeeeeeeeaaaaadddddd!

OK, I ask her to see the book again.  I flip the pages to about 10 pages later and find another song, Zie de maan schijnt door de bomen (See the sun shine through the trees).  I ask her, "Maya, what song is this?"

"I don't know, stop asking meeeeeeee!"

Never mind I say.  And Maya and her book walk out of the room.

Ten minutes later she comes back, without the book and says, zie de maan schijnt door de bomen.  

Without looking up, I ask again, Maya did you read that?  She stomps.

OK, little girl, the jig is up.  


Wednesday, August 28, 2013

The Wheels on the Bus Go Up Your......

F*&$ing a&%hol*!!!!!!!!!!!!

That's pretty much what I feel like screaming every single morning since Maya's new school year started.  

Now all parenting is tough, special needs or not.  All children go through difficult moments or phases or times.  They throw off your plans, your sleep, your sanity.  

You know what one of the  B I G  differences is though?

When you have a child with special needs, every single thing in their lives becomes a friggin' milestone.  Every nuance, every new thing, every change has the potential to wreak total and absolute havoc in your child's life and in turn, in your life as a parent.  

School is a milestone, vacation is a milestone, sickness is a milestone, birthday parties are a milestone, playing outside is a milestone, eating, sleeping, you get the picture.  

With autism nothing just is.

The changes have been running rather fast at Maya these last couple of weeks.  Vacation mode, going abroad, coming home, new au pair, new school year, new class (and away from her friends).  That's a monumental amount of change for my girl.  

The worst change of all though-- the new school bus.  

Now, the school bus is probably one of the hardest situations for Maya to succeed in.  It's small, it's noisy and there is no individualized attention because the driver, has to, you know, drive.  We've had problems on the bus before.  It's actually one of the hardest places because neither the school nor us as parents aren't actually there and therefore it is tough for us to have any real influence on the situation.  These are special needs kids and they all have their very individual set of issues and often those issues come into conflict, and they very little tools in the resolving conflict department.   So, the bus represents a place where issues can easily spiral out of control.  

Particularly if you have a bus driver that doesn't understand the situation properly and you know, who doesn't give a shit.  

For the past two years we had a great driver.    He knew the kids, he tried, he was patient and he was flexible and willing to work together with the parents and the school to try different ways to make the bus ride more successful for everyone concerned.  He took bad days in stride, he didn't take it out on the kids or write them off as bad kids.  He may not always have known how to deal with their issues, but he approached it with a good nature, a lot of patience and he cared about the kids.  There were bad days, but he never took it out on the kids or us, he'd always think together with us how we could address a particular difficulty, he listened to us and in turn we listened to him and tried to work together with him to solve his problems and make it easier for him.  

Apparently those days are gone.  

In the Netherlands, getting bussed to school is not a regular thing.  There are no school districts, parents are free to choose whatever school they like for their child.  Most kids go to schools in their own neighborhood and can very easily walk or bike to school.  For children with special needs though (like us), there may not always be a close by option which offers the appropriate environment for your child.  In that situation, the municipality where you live has to provide transport.  Every year you have to go through the usual song and dance, fill out the paperwork, blah, blah, blah.  This means though that the municipality will sometimes (as they've done now) change bus companies and go with a cheaper offer.  Which is pretty much what I think went down because we went from having a known, specialized bus company that deals with all forms of special needs, be it physical or cognitive and their drivers were trained and aware of the situation and understood that transporting these kids can be a particular challenge.  Now the municipality has changed companies, to another company specialized, but this company has subcontracted out to a regular taxi company and their drivers are just regular taxi drivers and have no idea what they are in for.  I don't know for sure but I am guessing the other specialized company got the contract probably by undercutting the price and then subcontracting out because the cheaper price does not cover the specialization.  

So I now have an older version of Beavis driving my daughter to school and every morning I have to resist the urge to special order a Louisiana Slugger bat from Amazon.com and beat this guy silly with it.  On the very first day of school he showed up at my house, I walked Maya out and he was yelling at this boy, let's call him Frank, from Maya's school, albeit a very difficult child, who doesn't talk and has a very hard time behaving.  The kids all have assigned seats in the bus and Frank wasn't in his seat and Maya was having a cow about it (because her autistic memory means she can remember who farted on the bus at exactly 2.13 PM three years ago) and she is having none of this jostling the seats around business.  I tried to explain to the driver that each child has their own assigned seat and it would be better for him and for the kids if they were to sit in the seats they were accustomed to.  He said, nobody informed him about it, so he doesn't have to do it.  

So I knew that the ride would be bumpier than my home state of Pennsylvania in winter even though the Netherlands boasts zero potholes.  

Day two, Beavis arrives at my house and I can hear Frank screaming at the top of his lungs before I arrive at the front door.  Maya's best friend L was in the seat next to Frank which is not his place and he had tears in his eyes.  When he saw me he undid his seatbelt and hugged me.  I again said to the driver that each child has an assigned seat and it would be better if L sat in front next to the driver, if Frank sat in the middle bench by the door and if Maya were in the back corner by the window.  Then each kid is not in physical reach of one another and cannot start tormenting the other.  He told me that it doesn't matter because your daughter doesn't know how to behave anyway.  I explained to him that these are children with special needs and while I know it's difficult he needed to listen and try to find an approach which will work.  He then turned to Maya and said are you going to start already, you need to listen and get your seat belt on and not cause trouble.  I told him he is never to scold my daughter, that if there is a problem, he is to talk to me about it.  He turned his head and looked the other way.  

These are just a few examples of the issues we have encountered in all of 8 days of school.  

At school they said last week that Maya came to school upset every single day and has been very difficult to reach these days.  

Tell me about it.  

Now I am not putting it all on Beavis, these kids are difficult and my daughter can be naughty and is more likely to be when her routine is broken and when things are stressful.   So, I cannot blame the driver completely, I certainly can and do blame him for doing absolutely NOTHING to be constructive and help the situation.  In all honesty he probably had absolutely no idea what he was in for when they gave him this route.  I've called the transport company and complained twice so far and have made an agreement with the school that if things don't settle down in two weeks, we will lodge a formal complaint with the municipality and they will back me up.  

It probably won't do much good but I will jump through the hoops anyway, because if I don't address it, no one will.  

The question is what to do if a change doesn't happen?  I am a working mom who has to be at work. Leo has to be at work early in the morning and can't drive her.  We are a one car family.  It's a one hour  trip to go to Maya's school each day.  I suppose I could take her on the days when I am not travelling and get the au pair to take her when I am.  But why should I have to do that?  This is well within our rights to have appropriate transport and while I don't lob all the blame onto the driver, I do expect someone to take a constructive approach.  

Now if I can get through the next ten or so days without punching that guy in his face.  

Saturday, May 11, 2013

What do you hope for?

On Tuesday we have an interview with the government agency charged with providing additional funding for those with disabilities.

While Maya's school covers her therapy basics, physical therapy, speech therapy and one-on-one attention and a personal education and development plan, that is as far as things go.  If you want therapy outside of school, you need to request additional funding from the government for it.

Comparitvely speaking, I would say that the Netherlands is a pretty good place to be if you have autism.  Because the Dutch place an extraordinarily high value on conformity , they pounce on differences and want to weed out anyone that can't conform to the standards.   Although the official education policy says that as much as possible, they want to mainstream kids with special needs, the reality is, that in the majority of cases most kids with special needs are not mainstreamed, even those that are high functioning, if they go to a mainstream school, they are in a separate class.

Actually in the Netherlands they don't even use the terms high functioning or low functioning.  Not one person we have dealt with in 5+ years since Maya has been diagnosed has ever used those terms.  In the beginning of the journey, I asked them to classify Maya in this way (because I read so much about it on the Internet) and they insisted that the Dutch system doesn't label children in this way.

There's two ways to look at that.

One is that they don't label the kids and look at each kid as an individual and understand that even a high functioning child might need extra support.  The other is that they don't believe a child with special needs could be high functioning.  So depending on how you look at it, the Netherlands is either light years ahead or light years behind the curve.

I've basically decided to apply my best tunnel vision techniques and not answer this question, because Maya is getting supported and she absolutely, positively needs that support.  A  high functioning label might make me feel better about her future but it also might deny her the services that she so desperately needs.  I am sure if she wouldn't qualify for support, she'd be a mess in a mainstream environment and the multiple daily meltdowns we were dealing with would have become much worse with age and physical strength and Maya would be largely locked in her own world.

Tunnel vision it is.

Anyhoo, we have this interview on Tuesday because we feel Maya could really benefit from some additional support and we are asking for additional funding.  The Dutch call this additional funding a rugzak (backpack).  It's basically an annual sum of money which can be used to offset the costs of therapy, special needs extracurricular activities or additional costs (for instance childcare) since there are no after school programs that accept special needs kids (and even if there were, the costs would be exhorbitant).

The backpack can make a huge difference.  One of Maya's school friend's parents gets enough each year to fully cover additional therapies and childcare after school in the home.  Here, I have been paying out of my own pocket to have an au pair since Maya's horrible mainstream school experience because there seemed to be no other options for us.  Not that I would use this money to cover the au pair, but still.  Amazing how after 5 years in the special needs system, no one ever suggested to us to apply for the rugzak.  You do get a lot more from schooling than you do in places like the states, in the US a school like Maya's would probably be a private school, so I am not complaining, but things are just as full of fragmentation and no one gives you straight information here either.  It's like they build the system purposely difficult so that you have to work to find out everything you need to.

We want to enter Maya into an after school program focused on developing athletic abilities for special needs kids.  It's a fabulous program and it is run by a friend of Leo's family.  They would pick her up at school,  bring her to the gym and they work one-on-one  on different sporting activities and if they find one that your child is good at, and enjoys they will coach them.  Some children  even make it to Special Olympics.  They also have dinner at the center and the kids  learn how to help with things like setting and clearing the table, preparing food and doing chores.   Five of their assistants are people with special needs so for some, it can even offer some kind of career path.  After dinner, they bring the children home.  We think it would be really great for Maya to do this 1-2 days a week.  She reallly loves athletics, and it is good for her physically and the one-on-one could really benefit her without putting her in a strict therapeutic setting.   Down the road if we do get the funding than we would look into ABA therapy.

We'd never even come close to being able to afford this kind of support on our own.  Without the backpack, we don't do it.

Here's the rub.

Maya has come a long way since she was given her official diagnosis of autism.  She understands much more of the world around her, she is more often than not present in the world around her.  If I re-read the psychiatrist's, psychologist's, therapists, teachers reports, Maya has developed quite a lot and while all the behaviors and things they point to which justify the diagnosis are still there, they have a much less significant impact on her life.  The fact she is in a special needs school, and actually the type of school for kids who have the hardest time learning should carry a lot of weight, but still, how do I know that the guy interviewing her doesn't really believe in therapy or doesn't believe that Maya is disabled enough to justify extra funding?

Do I, her mother,  actually hope that this guy finds her disabled enough?

As her mom, I am not enough of a Pollyanna to wish that she wouldn't have autism, because I know she will have autism for life, but what I would wish for her is that her life is not defined by her autism.  What I want is for her to develop enough so that her adult life is one that offers her as many choices as possible rather than a life which is defined by her challenges.   Of course, I don't have a crystal ball and it is hard to know what Maya's abilities will be in a decade, but I feel in my heart that Maya is capable of much more than she shows.  Even a year or two ago, I didn't feel that Maya was ready to handle any additioanl activities or requirements on her time and that anything additional would actually limit her progress.

I do feel she is ready for that now.  While we are very happy with her schooling and she does make steady progress there, I feel that without additional support we really run the risk that developmentally she will progress, but remain within the same competency level that she is in now.

I know that an athletic/therapeutic program or any additional therapy we would do is no guarantee of a different outcome.  I know that and accept it, but I also don't want my daughter defined by my acceptance either.  I want to give her every reasonable chance.

So, yeah, I guess I am hoping she is disabled enough.




Friday, February 1, 2013

Take that, Graph!

I got my ass kicked by a friggin graph.

The other day Leo and I went to  meeting to discuss Maya's progress at school.  It's more or less like report card day.

Of course the way they do grades over here in the Netherlands is very different to the US and, in a special needs environment there are not official grades in the same way, but your child is measured against their educational goals which were set in the last semester.  The Dutch though, are big fans of changing systems to make this ever more complicated and give off the impression that they are always improving, but in fact, each new reporting system is more complicated than that last and really doesn't tell you much more.

They give you this 5 page report and go over it with you, answer your questions and then you sign it and that's about it.  The whole thing feels more like every other administrative exercise in the Netherlands, the purpose being more to make the doers felt like they did something, than the audience feel like something has been achieved.

Still, it is good to see that Maya has done well against the goals we set at the end of the last school year.  She's moved up another level in reading and one in math which is great and her social skills are improving.

One thing which is new to the report card is now they plot your child's developmental scores on a graph so that you can see from year to year how much progress your child is actually making and see what all those scores mean in a visual way.  The graph is set up as a simple dot plot type graph, where on the vertical axis is your child's age and the horizontal axis is your child's development score in each category until age 19, (the end of required education in the Netherlands.  The categories they grade you on are spoken language, language comprehension, reading, math, social skills with peers, social skills with teachers, practical skills.  The graph is further broken into 4 likely developmental outcomes, the lowest one is for children who will never be able to work, function or take care of themselves, the next is for children who will likely need to live and spend their days in a supervised day care type situation, the next is for children who will likely be able to work but with heavy supervision and who may or may not, depending be able to live on their own and the fourth is for children who could work with minimal or no supervision and might be able to achieve the lowest degree of mainstream post-high school education.

There is no scale higher than that.  Not in Maya's form of education. 

Maya's current development is right under the line of the highest possibility on the graph,  which basically means that unless she hits a developmental spurt, the likely outcome according to this graph is that her possibilities to achieve a 'mainstream' outcome are not possible and that the chances of her being able to live independently are low.

Now, none of this was a huge surprise for us, nothing anyone has said to us on this journey has given us any reason to believe that Maya will somehow spurt forward and end up at university with all the other mainstream kids.  The Dutch educational system always takes the pessimistic view.  That is the difference between Europeans and Americans, we always hope for the happy ending, they never fool themselves into believing there is a happy ending.

Still , seeing your kid as a line on a graph is sad.  In some way it reminds you of all your squashed dreams for your child all over again.  I pride myself on acceptance.  Accepting where Maya is now, acceptance that she might never get further than where she is.

I hate that frickin' graph.

While I accept Maya for where she is and who she is, and who she will be, and more important, what she may never be, I will not allow that graph to have power over me.

I will not give that graph the power to take away my hope or her hope.  

Because no one really knows what my girl is capable of and while I can accept that she may never get off that graph in her life, that doesn't mean that graph is a crystal ball.

My girl is flesh, blood, brain, body, light, love.  There is hope for her.


Thursday, November 8, 2012

A's All Around

Last month, Maya's school went through their bi-annual inspection.  The inspection is carried out on behalf of the Ministry of Education but is carried out by the Special Education Division.  Every 1.5 years, special education schools are inspected, evaluated.  

These inspections occur over a two week period, where for parts of the day different inspectors are in classrooms, observe recess time, lunch time and make an evaluation of the school, it's administration, lesson plans, teaching methods, interaction with the students, how they handle conflicts.  

Today we got a letter detailing the results.

Maya's school received the highest possible marks during the evaluation but a lot of things in the report made me feel so good (translating from Dutch here): 
  • The school is beautiful and well kept, it is visually a happy atmosphere.
  • We observed a high commitment and engagement from the students.
  • It was apparent that everyone on the school staff, from teachers, to administration personnel are highly committed and focused on getting the best out of each student.
  • The staff is flexible and adjusts their approach based on the individual needs of each student and/or each situation.
  • Lesson plans and individual goals are integrated well.
  • There is an impressive balance between learning, social integration and pedagogical methods.
  • The staff are respectful of each other and each student.
  • The students, some more or less socially adaptive are respectful to each other.
  • The staff handles students with behavior issues well, treating the students with dignity and respect.
  • No child is seen as a problem .
  • You can clearly observe that the social-emotional example set by the personnel is mirrored by the students, not only during lesson time, but also on the playground and during lunch and snack times.  
  • There is a good balance and flexibility in terms of teaching methods and content.
  • We have rarely given such consistently high marks.
  • De Heldringschool is an exemplary facility and it is almost mandatory that they should offer other ZML schools the benefits of their experience and expertise in how to build a special education environment which excels.  
Two years ago when we were looking for a new school for Maya, Leo and I picked this school because it gave us such a warm feeling.  They really seemed to care about the children and I liked that their approach was highly individual, warm and caring.  Dutch society places very high value on consistency.  From a foreign perspective, we foreigners living here often feel that things are so consistent that they take on an almost industrial, factory floor quality to them.  Leo, and particularly I loved this school because it had a warmer, more flexible quality to it.  

It's so great to see that what we love and value about Maya's school is also something which is recognized and valued by the educational authorities.  



Monday, November 5, 2012

Acceptance isn't Apathy

This year at home we have been working on Maya gaining more independence with everyday tasks. For the past month or two she has been getting her own drinks and snacks and now makes her own sandwiches and the other day for the first time made her own bowl of cereal.  She even carried it on a tray so as not to spill it.  She now brushes her own teeth and washes herself.  She's about halfway there on tying her own shoelaces, but it's tough for her with her fine motor skills delay.  Still, she gets her shoes on and ties the knot and we do the rest.  

These may seem like no-big-deal kind of things, not even worth writing about, but for Maya they are huge, not just the tasks themselves but the fact that she does these small things from start to finish.  Concentration is a huge issue for Maya, but slowly and with a lot of patience, she is making progress.  

Maya goes to a special school for kids with severe learning difficulties.  She is one of the higher functioning kids in the school but because of her concentration, her issues with time pressures and her need for extra attention and consistency, it is the right environment for her, even though Maya is higher functioning and has more capabilities than many of the kids in her school.  

Leo and I have gone back and forth on the idea of putting Maya in additional therapy outside of what she gets at school.  Maya has a one-on-one aide 3 mornings per week and she goes to physical therapy and speech therapy.  We've thought about ABA many times.  ABA is relatively new in the Netherlands but we've considered it ever since it has been available.   Every time though we back away from it, not because we don't agree with the therapy, but because we seem to always come back to the place where we feel that slowing down is the best way to speed up Maya's development.  Putting pressure on her through even longer days and more schooling may not be the best thing for her.  Maya is a child who needs a lot of down time, she needs to be able to be herself, in all her glory without constant correction and re-channeling her nature.  

Still there is a certain guilt that comes with the territory, that says I should be doing more for her.  

I want to be that mother lion.  The one who keeps fighting and never giving up, trying everything in her path to help her daughter.  

In the world of autism you are always doing that dance where you make a decision and question whether it is the right one, turn it over and over in your mind while you are cleaning up the house, cooking dinner or not fully paying attention in a meeting.  It's par for the course.  

There is no escaping the second guessing.  

A lot of our journey with autism has had to do with coming to grips with acceptance.  Acceptance that Maya is different, acceptance that she cannot do what others do, acceptance that she doesn't understand a lot of things, acceptance that she has loads of challenges, acceptance that *this* might be as far as she gets.  I accept that I don't know what the future holds for her, and I accept that it scares me.  

Mostly I accept my daughter, for who and what she is today, right now, this minute.  

All the progress that Maya has made since her diagnosis, since her days of constant meltdowns and wetting her pants, from the days that Maya would strip naked just to have some kind of control over her own life, that progress has been made through acceptance. Consistency through words and deeds that she is okay just the way she is, that she is her very best version of herself, right here and right now.   Sure, I sometimes question whether or not Maya might benefit from other therapies, maybe it would help her to develop more, faster.  Every day Maya has to go against her own nature, to venture out into the world.  Every time she looks someone in the eye, every time she tries something new, every time she asks another child what they would like to do, every time she handles a chink in her routine, she is going against her own nature.  And I get that is necessary if she is going to develop.  

I think, at least with Maya,  there is a fine line between stimulating her development and giving her the message that she is somehow not okay exactly how she is.   This is why we opt for quiet weekends and not a lot of extra curriculars, and we are not enrolling her in therapy outside of what she gets at school.  While I can understand trying new therapies and new things on a continual basis might be the right thing for some families, with my heart and soul I don't believe it is the right thing for our girl or our family.  And if I look at her, at 9, she is a confident child, she thinks well of herself.  

That has to count for something right?


Friday, September 21, 2012

No Such Thing as Free Alterations

Remember when you used to be able to buy clothes and the store would alter them for you?  Your pants would be hemmed, taken in at the seat or sleeves or whatever you needed for that perfect fit.  You'd stand in the dressing room and the sales lady would come with big white chalk and mark up your new clothes.

You'd return in a few days and voila, your clothes would fit perfectly!

If only it worked that way in the world of autism, mark something up with chalk and boom a couple days later, presto, everything fits, everything is clean, pressed and beautiful, off the rack.

Maya just finished her third week of school and things are, well, a little off.

To be honest there has been a lot of change for her to process in a short amount of time.  Besides the obvious, the new school year, Maya is in a new class with new teachers although most of the kids are kids that were in 2nd grade with her and her closest friends are with her.  But I think 3rd grade has slightly more of an expectation for independence than 2nd grade.  It's hard to tell of course from this vantage point.  I have talked very briefly with one of Maya's teachers this past week and he told me that Maya is doing pretty well so far although all the kids have to adjust, but that she was happy in the second week when reading and math started.

Happy with reading?  Um, are you sure you are talking about my child?

The bus is particularly difficult right now.  


Maya's driver is a truly lovely and patient man but he is at his wits end with her as she apparently not only yells, screams and throws stuff but gets all the other kids doing it too.  The worst is that she keeps taking off her seat belt during the ride.

The poor driver has aged about 20 years in the past 2 weeks.

Last year when she was also acting up I suggested he put her in the front seat with him rather than in the back seat of the bus by herself.  At the time he was not really willing to do that because every kid has an assigned seat (although no one was assigned next to him) but now I asked him to do it again to see if she would settle down.  I also gave Maya a sticker chart so for 5 stickers, each one representing a day when she behaved well on the bus and after 5 days she can choose a new game on the iPad for under 2 Euros.

We haven't done a sticker chart in a good 2 or 3 years so I figure since they have not been a frequent visitor as of late, there is a chance it might work.

As of this evening there are 3 stickers on the chart, although our au pair told us that the report today was only so-so but she gave her a sticker anyway, lucky I wasn't home because I wouldn't have.

At home things are okay but I can see that Maya is struggling with all the change.  We are not having meltdowns but just a lot of not listening, disobeying and "I don't want to's."  Our new au pair, with us for a month is trying to find her way with Maya but Maya's totally taking advantage of the newness of the situation and taking her for a ride, taking her old sweet time with everything, stalling left, right and center.

It's a little tough right now but we've seen this before, it's Maya's usual pattern that she falls into when she has to face a lot of change.  The good great news is that usually when these periods of change happen, obstinance is usually accompanied by it's constant companion, meltdowns.  So far we are not melting down.

Not melting down is always a good thing.

I am no expert on behavior and I am not a perfect parent.  I lose my cool at times when Maya.  But mostly when she is having a difficult period I try to just ride it out, I try to be patient with her, I try to find the balance between nurturing and discipline, which is always a moving target.

I don't always succeed.

One of the many things I´ve learned on this journey is that just like altering Maya is no easy, presto-chango operation, neither is learning how to be the right kind of parent on this journey.   I am sometimes too permissive, opt for what is easy over what is right and other times I don´t give her enough space or patience.

Not only is dealing with autism a process but so is parenting.

I feel very lucky that Maya is such a happy child that a lot of the time she can be convinced out of obstinance with a tickle or a hand hold or a hug to snap out of her funk, I feel lucky that she never stays sad for long and that while obstinance sometimes arrives and stays for a stretch, sadness never seems to.

I am not grateful for my daughter's autism but I am grateful for her character.

In Maya's school every Friday the teachers send home a letter to the parents which goes over what was done over the past week.  In second grade letters were hit or miss, sometimes they did them and sometimes not and they were usually one little paragraph which told us the new words of the week and about how the kids had fun in gym class and some little generic sentences about the learning theme.  Every semester the class explores one or two themes, like at the end of the last school year the theme was vacation and the words they learn and use are vacation related, the stories are vacation related, etc.  Trouble was that the themes each last about a month so basically you had the same two sentences for a month which basically gives you no information.


Not that I wasn't appreciative, but they were short on details.  And of course Maya being Maya tells you even less than the form letter.

Letters from third grade, at least so far are a different species.  First off they are at least 2 pages.  Although they do not speak of your kid specifically they do talk about what they have been doing in detail and they talk about the mood in the class.

Today we got an extra letter because today was Sports Day at school   It was great, they gave us a list of the sports activities and what the kids liked and didn't like.  Because I was armed with information I could ask Maya more detailed questions about her day and she told me much more than our usual how was school/fine serve and volley.

I am grateful that even in the midst of difficulty, there is good news too. 

This week is Yom Kippur, the most important holiday of the year in the Jewish calendar.  A day of self reflection, of coming before G-d and asking forgiveness for your sins.  I am not a religious person and I am not big into the ritual of Yom Kippur.  I do believe in G-d but I don´t believe praying should consist of the mere asking of things for oneself so I am not asking G-d for this but I am wishing and hoping that I can find both the strength and the clarity to be more patient and I do ask for forgiveness for those times I was irritated or angry instead of focused and understanding.  I do pray that I can be what she needs to grow and develop to her fullest potential.

My wish for her is that no matter what her difficulties I can show her through my words, deeds and actions to love and be good to herself, imperfections and all.

I don´t think it can be drawn with chalk, but I do believe it can be reached.


Thursday, August 23, 2012

Good Vibrations

Yes, you should be reading that title with the Beach Boys' song in your head.

We've got a week and a half of summer vacation to go which means then I go back to work and Maya goes back to school (3rd grade, woo hoo!).

Usually a little sense of dread accompanies me during Maya's summer vacation.  Things always get a little bit tough when Maya's school routine is broken, last summer we had quite a time.

I have learned some lessons since then and this summer we played it a less loosey goosey trying to stick more to a routine and that has helped.  But to be honest I think the big difference is that Maya has matured an awful lot over the past year.  She has a much greater sense of what is going on around her and can deal better with change.  She knows that summer vacation is 6 weeks and after that 6 weeks she will return  again to school.  Summer vacation no longer seems like a black hole to her, she understands that it is temporary and that things might be a bit off for a while, but because they will resume again, she can deal with it much better.

Plus, we spent oodles of time preparing her for what would happen from week to week.  And we have tried to put focus points on each week to give her something to look forward to.  And all that seems to have helped.

I also think that Leo and I taking a longer period off from work has made a difference too.  Leo was off for 3.5 weeks and me for a full month.  We've both had a lot of quality time with her instead of trying to make quality time that thing you do between coming home from work, cooking dinner and taking out the trash.  There have been lazy mornings with lots of joking and tickling, afternoons by the pool or playing, movie evenings and just a lot of relaxed time spent together.

And two weeks sipping wine and eating pate by the pool in the French countryside doesn't hurt either.

Maya did so well during our vacation, not one meltdown, not one situation we couldn't talk her out of.  We changed up plans on her and had no schedule and she did great with it.  Most days we ate our main meal at lunchtime, spending a good 2 hours in a restaurant and she really was great with it.  She sat, ate, didn't run around and only got up from the table somewhere near dessert and always stayed in our sights when she did so.  We were careful and tried to structure the days more or less the same, relaxing in the morning, leaving mid morning to drive to a nearby town to explore, a short amount of time walking around, a leisurely lunch, shopping and then home to swim and sticking close to home in the evening.

At the house we rented the owners run a B&B in the main house, for 4 days there was a Belgian family there with their two kids, a little girl of 4 and a little boy of 6.  Although many Belgians speak Flemish which is basically a Dutch dialect (or vice versa, I can never remember which), the kids did run around a little.  When Maya was swimming these kids were very quick to grab her toys without asking and were not very eager to give them back but she stayed calm and walked over to them and asked them, could I please get my bubbles back or you can have the yellow ball and I'll take the blue ball.

I was so proud of her.  My girl taking the high road.    

The owners also have, since the last time we were there, gotten a dog. When we saw him on the first day, the alarm bells went off in my head, Maya loves dogs to a point of obsession and I immediately pictured two weeks of Maya chasing that dog everywhere and us spending two weeks saying, "Maya leave the dog alone." as we did on another vacation a few years ago.  But Maya was great with the dog, always asking the owners if it was okay to play with the dog and if their kitchen door was closed, Maya left the dog alone.  Of course when she would wander downstairs half asleep in the mornings the first thing she asked was if she could play with the dog and I would always try to hold her inside to give the owners and the dog a little peace but she was very good about it.  And at the end of the visit they told us it was great having a child who knew how to approach a dog and how wonderful it was that they didn't have to keep the dog entertained with Maya around.  They complimented her and were very generous about it, remarking to both Leo and I a few different times on how far Maya has come in the two years since they saw her last.  Now perhaps this was all politeness but I never saw a single look pass from those owners (and trust - I am an expert at recognizing the looks).

Happy Dance!

Since we've been home everything's been great too.  Maya is happy and easy, she's playing often with the kids next door.  The little girl from next door has been over at our house twice, each time staying for about 6 hours and I've not once had to intervene to settle a conflict, they've not had one fight and they have played together the whole time and tonight for the very first time she will sleep over.

For me personally, it's been wonderful to just be a mom rather than a working mom and have nothing to do but take care of my girl, my family and our house.  It's been so relaxing not to have to fit everything in on the weekends or evenings, when I am so dog tired.  It's been great getting my house in better order and doing some cleaning that really gets overlooked most of the year.  It's been wonderful being able to do all that at my own pace and still have time for myself.  I'm about to finish my 5th book of the summer.

I know that many parents, myself included, are a bit glad when summer is over and school resumes again.  It's tough finding childcare for the summer if you work, most working parents sew a quilt of sorts made up of day camps, relatives, friends and family vacations, but despite the warm weather and the fun, kids get bored or they go a little stir crazy without the regular routine.

There's been none of that this year for us.  It's just us and our happy girl, who is growing up, understanding more, maturing but still remaining our sweet, happy, over-the-top joyful girl.

I've enjoyed every single second.

Saturday, July 7, 2012

Roadblocks and Root Causes

Yesterday I had the opportunity to see Maya during one of her swimming lessons.  This is always a special treat because when I go swimming with her she is usually too over excited to do much except run from one pool to the other and splash around.  So I love that her school let's us come once a year to see them at their lessons, to see the progress they are making.

And Maya is making progress, step by step she is getting there.  Her big feat a year ago was being able to go under water.

But now she is swimming, it is a doggie paddle mostly with the occasional dive under water, but who cares, arms and legs are going and she moves from one place to the other, without walking.

Maya, being a Dutchie, and the Netherlands being what the Dutch call a "waterland" means that swimming is of prime importance for kids.  The weather sucks but Holland's canal systems means that there are very few houses without creeks running in front or behind them to help prevent flooding, so swimming is an important skill to master.  And since the Dutch love their rules and they are Calvinists, it is important to get a 'swimming diploma' or several swimming diplomas.  The Dutch being the Dutch having the diploma is way more important than actually being able to swim.  Me, I only care if she knows how to swim and has fun doing it.  But that's my American all-for-profit craziness at work.  


Still, Maya, being Dutch is a little fixated on getting a swim diploma.

Her swimming has improved a lot over the past year, going from this to this.  And I spoke with her teacher and she told me that they really think that she might be able next year to get her first diploma, they really said her skills are pretty good but lack of ability to focus means that the progress is very slow as it takes such a long time for them to teach her anything new, because she is chaotic, she runs off and does her own thing most of the time at swimming lessons (you can see that clearly in the video from this year, Maya is off swimming by herself while the teacher is at the other end of the pool teaching the kids something.  .

We always come back to focus.  Focus is a roadblock

If I apply Lean Six Sigma methodology to Maya and pretend she is a process, I would say that focus is our significant root cause.  Meaning that if we could find a way to address that we could experience significant improvement in all areas.

Alas, Maya is not a process, but a little girl with autism.  So while the principle works the same, solutions are not easily found.  She makes progress but her inability to focus adequately keeps her progress at baby steps.

I feel like if we could put our finger on focus, she could run, sprint, jump hurdles.

I can honestly say I don't have the answer.  Leo and I use patience and encouragement, we don't pressure her and I am 100% SURE that is right for Maya.  Pressure will take the progress away and each little baby step encourages her to do a little more, to try what she is afraid of, to not listen to her natural fears and anxiety which tell her to hide under the table.

And I also think that loading her up to the gills with therapy is not the right answer for her either.  Maya really needs her downtime, she does everything in her own time and her own way and turning her home into an extension of school, I truly believe will also impede her progress because Maya needs not only techniques, but encouragement and time and if we fill up every moment with therapy, that every waking moment of her life is a learning opportunity, I feel we risk her self confidence which I think is one of the main ingredients in this recipe.

I read about other parents that send kids to every kind of therapy under the sun and some kids thrive with all this extra support but some don't, they may make progress but some don't.  It's not a guarantee and there's no one thing that works for everyone.

That's the head banging truth about autism.  When you know one person with autism, you know one person with autism.  There isn't 1 answer.  What works amazingly well for one does nothing for another.

So, we as parents are largely left to our own devices and to the available support we can afford for our kids.

Autism therapies aren't as well developed here as in the US or other countries.  ABA is non existent, they don't even train therapists in it yet here and OT is quite rare as well and it is still mainly used for senior citizens to keep them active.

I do think the reality of special needs life in the Netherlands is while there is a lot of support available and what is available is covered by health insurance,  I do think the mentality here is to encourage but not really to push the boundaries. The Dutch are not a very push-the-boundaries-kind-of-people.  There isn't every kind of therapy imaginable (and also not a lot of drink-the-Kool-aid type therapy either).  



In the Netherlands they don't have the distinction of high functioning, low functioning.  You have a diagnosis and an IQ score and that pretty much determines your route.  I think it is, in a way a good thing that they don't use those labels because I think you can easily get fixated on a label, and a lot of high functioning kids have loads of issues too and they have a hard time getting support for those issues.  In many ways, in the US at least, you get much more support if you are low functioning and if you are high functioning your kid is probably going to mainstream school and maybe struggling, because they need support and services that just aren't available.  


I would say Maya doesn't fall into high or low functioning.  She is medium functioning.  She can do a lot of things but she cannot always demonstrate it in ways which are measurable by Dutch standards.  She is chaotic and cannot focus but she does have the ability to learn.  


At this stage in Maya's development, I do think she could benefit from ABA but it's not available here.  I know there are parents who learn how to do it themselves but I find without the support of a qualified therapist in the beginning it will be tough to do, it will just be me running around after Maya trying to channel and refocus her and while I have a lot of patience for my daughter, I am not that good with remaining neutral and in the moment with her.  Plus, I have to work and have no option not to work and take on a job as Maya's full time teacher and therapist.  My time with her is limited and I don't want to turn home into an extension of school because that is not good for her.  


I spoke with Maya's teacher about this yesterday, about how I feel that her ability to focus is standing in the way of her progress.  Maya continues to have a tough time listening and focusing in school these last weeks and we discussed that Maya is going through a lot of change at home and while she is not necessarily being difficult at home in the classic sense, that Leo and I recognize that she is 'off' these days.  And that we are planning to have a more structured summer holiday and spend a lot of time with her, things are where they are right now.  


Maya's teacher suggested that maybe it would be a good idea to talk to the school's psychiatric social worker about it.  She felt that we could use some more support for Maya at home and outside school hours.   So, I will speak with her next week and we will see what comes of that.  


So, maybe Maya's difficult time will lead to something great for her.  


For now, I'll take the swimming.  












Thursday, June 21, 2012

Just a Taste

So all week I have been celebrating/lamenting Maya's school camp week. 

My Facebook friends are probably all sick of me already.  As one friend put it, "it's so cute that you posted 600 photos of Maya leaving for camp." While that was overstated I can see where it would feel like 600 photos over a minor event.

A blip actually, not even an event.  

It's been a long week. Well, in reality 4 days.  

As the mom of a special needs child, I celebrate that she is able to participate in such an event, that she can spend a few days away from us without it being the end of the world (for her).  Many children in her school are actually at school this week because going to school camp is too tough for them, it's more a burden than a fun adventure, it's not a chance to spread their wings like it is for Maya, but it is more a surety that they will clip their own wings.  

I am so very grateful that Maya is one of the kids that can do it.  

Even though there is a little fear on her side, and a whole-lot-of-me-turning-into-a-whiny-woman-hailing-from-Anatevka on my side, I am so very glad that Maya has this opportunity to shine, to take some distance from her home and experience some little slice of the world without our watchful eye and guiding hand.  And I am so very grateful that the school makes this opportunity for her possible.  

How many times have I written so very in the last couple of minutes? Note to self:  thesaurus.com

I miss her.  I know it's good for her, but I just miss her, her being, her essence, that part of her that makes the atmosphere of our house different when she is around.  

I miss Maya's laugh, that infectious, unforgettable giggle of hers that has a musical quality to it.  I miss her tickling my face and hands when she is about to leave a room.  I miss how she yells from the top of the steps when I walk in the door from work, "is daddy home?"  I miss how she will look at me from across the room when she is about to do something for that silent half nod of approval. I miss how after she brushes her teeth at night she will come and breathe all over me to prove she actually brushed them.  I miss how Maya crawls into our bed silently in the morning after we wake her up, how she moves my arm from whatever position it's in to be around her and how she will throw her leg carelessly over mine and stroke my foot with her own.  I miss her nightly declarations after dinner of how she "wants to be with her mommy."

And I wouldn't be completely honest if I didn't say that on some level it is nice in a small dose to have that freedom back, that freedom before you had kids, where if you felt like going out for coffee, you grabbed your bag, threw on some shoes and went, not even thinking about where you are going, whether it is okay for kids, whether she will have enough to do, whether you packed a coloring book and crayons and have the iPad fully charged or how  you will gobble your food in 12 seconds flat in case she is restless so you can go for a walk outside with her?  

Plus, it's fun to read or watch tv without interruption or constant chatter by a little girl with a good nature but who is largely oblivious to clues that now might not be the ideal time to talk about Thomas the Train, or about how the purple dress cannot be worn by her stuffed white mouse because he doesn't like purple.

Look, a lot of my friends, who had kids at a younger age than I am are dealing with their kids going off to college, of moving out of dealing with that empty nest.  This is 4 days, I know it's not much to deal with.  

But I can understand the teeniest bit about what people say when their kids move out - about how it's the quiet that is so hard to deal with.  

It's deafening.  

I've gotten a teeny tiny nibble of that and I can imagine that in another decade or so if Maya can take care of herself and live on her own, that I will get the main course served to me.  

And like the others who came before me and already really know what it's like, I'll know too.

I won't like it any better than they do.    

Wednesday, June 6, 2012

Report Card Day


Maya's school photo
This evening we met Maya's teachers to discuss how she did this school year and to agree on goals for next year.

It's kind of like report card day and IEP day all in one.  And like with just about anything to do with autism and special needs, report card day is not anything like it is with a typical child, nothing like it was when I was a kid, when I brought home a handwritten oaktag report card with my grades written in, or in college where you waited for that window envelope with  your computer printed grades on them.

Report card day has always been a mixed bag for us.  While Maya does make progress it is usually microscopic and there are always so many deficits listed on paper and so many goals not quite reached that after a while it becomes difficult not to get lost in the deluge of her special needs.  While the reports are not negative themselves, it gets tough to read on paper how many problems your child has.

This year the meeting started off with the news that Maya will in the next school year move to group 3 (which is not really the equivalent of 3rd grade and the differences are less well drawn then in the American school system).  Plus in Maya's school it is estimated that each child will spend 1.5 - 2 years in the same grade.

Maya started at this school in group 2 in March 2011 and in a little over a year she has met the requirements to move to group 3.

Yep, I am proud!

Check out these results (and as always I translate from Dutch):

Reading:  Moved up 2 levels (goal was one level)
Math:  Moved up 3 levels (goal was 2 levels)
Writing/Fine motor skills:  moved up 1 level (goal was one level).  She can now cut with scissors which was quite a feat for her to achieve
Physical therapy:  met all her goals for the year
Speech therapy:  met all her goals for the year
Gym:  met her goals for the year
Swimming:  exceeded her goals for the year
Concentration:  moved from being able to concentrate 5 minutes to 20 minutes on a task.

Reading and writing are still tough for her but she is making progress, although it is slow going but her comprehension is good.  She can answer questions about what she reads and what others read to her.  With reading it is still kind of difficult for them to understand if she is just not motivated to do it or if she really doesn't know what is being asked of her.  She seems to be more easily distracted in reading and writing than in math, but next year she will get 3 extra reading/writing class periods per week with her one on one aide.

Concentration still seems to be her biggest issue, she often gets up from her desk in the middle of her work and that causes her to finish her work late.  When she is motivated to concentrate, all teachers/therapists report that she works very well but it is tough for them to understand what triggers her to lose her concentration.

Maya's class photo

So all is well, the progress she is making at home seems to be mirrored at school and I think we cannot forget that being in one school which is geared to her needs is having a good effect, as is the class aide that works with her 3 mornings per week.  Before the last year, Maya had been in 3 different schools over the course of one year.  It's really remarkable seeing what a consistent environment is doing for her.  

And to boot, the organization which deals with all the various therapies within the school has asked us if they can use a photo of Maya in their new promotional materials.  We looked at a bunch of photos taken and settled on this one.  Although she was in the full grips of a cold, with a nose which would rival Rudolph, I loved this one of her at her desk, seated with her hands in a typical "Maya" fashion.  

Our cover girl! 


So, all in all, I don't think it could be any better.  After one year at this school, for her to be making such steady progress on her own terms.  Yes, it is slowly but surely and of course as her mother I always want it faster and farther.  But like many things in life, autism and special needs are not a sprint, but a distance race.

I don't know where her finish line will ultimately be, but it's great that she is slowly and steadily moving toward it.

Sunday, May 13, 2012

Invisible Lines

When you have a child with special needs, one of the biggest decisions you ever make for them is the choice whether to put them in a mainstream or a special needs schooling environment.  There's no easy answer to that question and no one answer is the right one for every kid.  It's a decision, even after its made you come back to it time and again.  It never leaves you, you worry no matter what you do.  You worry that your child won't get enough positive attention or that she won't be challenged enough.

Truth be told, I grapple with these things quite often.  It comes up in a hundred different ways in moments you don't expect.  

Like on Mother's Day.

After a lazy morning Leo and I decided, that since it was sunny to head out to the beach for the afternoon.  Maya loves the beach.  And I love nothing more than seeing Maya's excitement, joy and enthusiasm as she runs through the sand, marvels at the waves of the ocean against the blue sky and as she picks up seashells.  I love seeing her laugh at loud as she watched the few surfers brave enough to tolerate the cold North Sea water in May as they attempted to catch a wave.  And how she let out a big wow as she look at the colorful burst of kites flying overhead.  

And Maya wasn't the only one in her element. Leo and I were able to assume an easy position at one of the many beachfront patio cafes, so we could relax and sip lattes while Maya ran between us, the small swingset and slide about 100 yards away and between the water's edge about 500 yards away.  Her jean jacket with hot pink scarf made her easy to spot, so Leo and I were able to sit and chat easily without having to get up and down a 1000 times and be by her side every second.  

At first I was a bit worried about leaving her to be at the seashore with us out of grabbing distance. Leo, who is a total worry wart and nervous nellie about  issues like the right way to carry a bag or if Maya put the iPhone or iPad in the charger wasn't bothered in the least about our daughter, whose swimming skills are largely still in the learning department, flirting with the water's edge.  

She's fine, he offered when I said that maybe one of us should be down there as she dipped her feet in the water.  

Now Maya isn't all that much of a daredevil, so I knew she wouldn't voluntarily go in the water, but for a few minutes the image of a mini-Tsunami or the thought of high tide coming made me a little bit nervous, so I joined her down there, collecting shells and listening to her laugh and shriek with delight as she out ran the tide to avoid the cold of the water.  

After 15 minutes, I wanted my latte and my feet and hands were cold so I tried to coax Maya to come back with me.  Maya promised me she wouldn't go near the water so with my shoe, I drew a line in the sand and told her not to cross it, she promised and I retreated back to the couches after standing there about 5 minutes to make sure. 

While Maya is a kid who does try to push her limits, she respects rules and lines and she dutifully played, outran the tide and collected shells for about an hour without ever crossing the line I drew.  

Even later in the day when she returned to the shore, the first thing she did was draw a line with her finger and look back at me and nod her head to get my approval.

When the lines are not so clear, it becomes more challenging.

At one point Maya went to the swings where there was a group of girls hanging out.  I could tell when Maya first approached it was not going to end well.  The oldest girl there looked to be about 10 and she was Lord and Master of the swingset kind of dictating who would get the swings.  

Danger Will Robinson.  

Leo and I started to talk about these girls.  Leo, forever being on the side that anyone who does Maya wrong is automatically in the wrong,  called them bad news.  But honestly, the scene was innocent enough.  They were kids being kids, one asserting their authority over the others as kids do.  The issue was more that in situations like these, Maya can't find the lines.  She needs someone to draw them and when they are not drawn, she is not quite sure what  to do.  

And it's precisely when she doesn't know what to do, that it invariably goes wrong.  

About ten minutes later Maya came back to the swings determined to get on one.  She waited there and I could tell by her body language she was ready to pounce.  When one freed up, she hopped on it and the oldest girl, tried to get her off the swing.  I could tell they were arguing and I stood up but also waited to see what would happen.  These girls' parents who were sitting across from us at the cafe were happily chatting with their friends and didn't notice anything awry.  

And to be honest, these were just kids being kids.  There really wasn't anything to notice, unless you're the parents of a child with autism.  

Maya started swinging and each time she moved, the girl grabbed at the chain of the swing to pull Maya back, I started walking toward the swings.  By the time I got there two of the younger girls were standing there  and they were trying to grab and stop Maya from swinging.  Maya I could see what getting angry and she pushed the oldest girl away from her.  The oldest girl then pushed back and by that moment I was nearly at the swings and asked these girls what was going on.  

The oldest girl told me that the two younger kids were waiting for the swings and Maya cut in front of them.  Now I honestly didn't see that.  I only saw the oldest girl there and only saw the two younger kids after Maya got on the swing.    I asked Maya if she did go in front of these girls and Maya said that the girls kept calling her a boy and telling her that the swing was only for girls, so she jumped on.   And then this 10 year old started shouting that Maya was a liar.  Not wanting to either wipe the floor with this girl or make Maya feel badly about the situation, I just put my hand out and said to Maya that it was time to go.  She jumped off the swing, took my hand and said goodbye to the girls.  The oldest girl rolled her eyes and huffed and we walked away.  When we reached the cafe, I could see that these girls' parents were also surveying the scene.  I was a little bit annoyed that my kid had gotten picked on but feeling like making any mention of it would just prolong the situation and also wanting to teach Maya that it is better to walk away from people who are not nice, I just nodded my head at the parents and we went on with our day.

Which brings me back to the questioning of mainstreaming or special school.  It occurred to me in the car on the way home that if Maya were mainstreamed, this would be a scene which would probably play out time and again for her on a daily basis.  And after a while, scenes like this might start to eat away at  her and make her feel badly and feel isolated.  

I want many things for Maya as all parents want for their kids, but I think if I had to make a list, the number one thing I want for her is to feel good about herself.  To understand that she will both win and lose, to be gracious in victory but not to be debilitated in defeat.    

Actually, even if Maya were not autistic this would still be my number one want for her.  

And I think, no, I know that if Maya were in a mainstream environment right now, there is a good chance that the confidence she has, the good opinion of herself that she has would be greatly at risk.  That right now she is better off in a protected environment, where the lines are drawn, where she can take small steps forward without putting so much of herself at risk.  Maybe someday she will get better at dealing with situations where the lines are not so clear.  Right now,  she is just where she needs to be.  

Not a bad Mother's Day at all.  


Thursday, April 26, 2012

In her own good time

So many people ask me how Maya is doing.  I really love that people are concerned and ask about her, although often I am never sure how to respond.  I find myself either giving a real perfunctory cookie cutter answer, she's doing great and yes, she likes school or going totally to the other extreme and giving way too much information, as I did the other day at work while I talked a colleague's ear off for 25 minutes.

I guess that colleague will look for another table in the lunch room when she sees me sitting down.

Oh well.

And I must say that while we have our ups and downs and good moments and not so good moments, the last year Maya has really matured.  She has calmed way down and the highs and lows are not as high and low as they used to be.  The bad moments are not quite as bad as they once were although I still want to cut a bitch when I get the "isn't she too old to act that way stare.  Her therapy has helped immensely and I think her school has helped a lot too.  Maya has been at her school for just over a year now and the stability of being in a familiar environment has really done a lot for her.

Yes, Maya's autism is still a challenge and if you measure it day by day, incident by incident it still has a huge impact on her life and her development.  But if you take a step back and look at the timespan of several months, I can see that she has moved forward.  She is able to swing with unpredictability much more, she doesn't like it any more than before, there is coaxing and encouragement involved, but it doesn't break her down anymore, doesn't force her back into her own little world.  She tries to work it out, some times more successfully than at other times but there are a lot less incidents.  We talk through things much easier than before.

Unless it has to do with spiders.

Then all bets are off.

Yesterday morning Maya had a checkup at the dentist.  Maya is terrified about any thing reeking of medical, even more so since she had her last round of vaccines.  We've had a couple doctor and dentist appointments and while Maya hasn't had a full blown meltdown since the vaccines, just the memory of it in a doctor's office makes her freeze and start nodding her head furiously.  I didn't have high hopes for the dentist and Maya was crabby and clingy when I woke her up (not her way at all unless there is a white coat involved).  As usual I told her exactly what would happen so that she would have no surprises.  When we were walking into the building, she offered this little nugget:

Mommy, I am 8 years old now, that's not little, so I am just not going to be scared of the dentist anymore.  
OK, who are you and what have you done with my daughter?

And she really was a trooper.  Scared and wooden like, but still she got in the chair by herself and as long as I held her hand, she did everything the dentist asked.  Open, bite down, spit.   She didn't look the dentist in the eye once, but hell, it's a dentist, they probably get no eye contact.

And I've noticed other things too.

Maya doesn't have homework from school and often I feel like I am in a bit of a black hole about what she knows academically and what she doesn't.  They send school work home periodically and whenever I am at school they gladly let me look at all her work but because she doesn't have homework and doesn't work from too many books (most of her work are sheets that they print off their lesson server at school), it's hard for me to put in context what she is learning and what the learning curve is.  And to be honest, everything I've seen is stuff that would have easily been covered in kindergarten or first grade, maybe even preschool.

But her writing is getting better.  If I look at her math papers from a year ago, those 1's, 7's and 2's look like they were written with someone with Parkinson's and all the letter practicing lines were always left blank.  Now her pencil lines are solid, she's put a little muscle behind the pencil and that's good.  She's still enormously nervous about letters and doesn't do much writing of letters, but at school she does do it on the computer.  And she does it like crazy on the iPad.

Speaking of the iPad, I sometimes feel that the iPad is a little like her homework.  When we first got it, I tried to load it with all kinds of learning games, but Maya would have none of it, always going to Angry Birds, Talking Tom and her oodles of "maker"games (cupcake maker, pizza maker, breakfast maker).  We decided not to push her, to just let her have her fun.  Slowly though I could see that she was developing an interest in the learning games.  Over the last two months after dinner, in our bed or in her own, she would lay with the iPad and practice spelling and simple addition and subtraction.  Yes, she is still counting the number of oranges or stars or hearts and doesn't get the symbols yet and I always have to remind her when it is subtraction and not addition as she kind of thinks everything is addition.  And she really is doing great with the spelling games.  Although every time I ask her what a word is, she clams up and says I don't want to play with the iPad anymore.  


Now every evening we sit together and play memory game and she kicks my butt every time and then we play a letter game and a counting game.  And even though I have to help her with it, she's doing it.

And she is getting better at it.

On Monday when Maya came home from school, like every day I asked her how school was and she gives me her usual pre-recorded answer --fun.  I ask her about gym class or if she worked on math or language and sometimes she zips me a fast yes but most days she says, I don't want to talk about school anymore mommy.  And she did the same on Monday, but after I pumped her full of yogurt to get her blood sugar up, I asked her if she did math today (she has math every day) and she told me that she had a test in math.

First time I ever heard her say she had a test.

And to be honest, at her last educational goals meeting her teachers told us that they hadn't been able to test her, because she won't sit and focus on a test.  She will work for a few minutes and then go get crayons or run around, so I was very curious to hear her say that she took a test.  I asked her if she finished it and she said yes.

Now it is altogether possible that she didn't finish the test, but Maya looked me straight in the eyes when she told me she did it and her usual, when she is not sure or when she is not telling me the truth is to talk really softly and look off to the side.  Maya told me today that tomorrow she will get her test back and bring it home.

I have hopes that she might have finished one.

I've resisted the urge all week to call the school and verify her story.  Yes, I want her to have finished that test, yes, I want her to have done well on it.  Actually, scratch that, I don't care if she did well on it or not.

It's in the doing.

And I am not short sighted enough to think that finishing one test is the answer to everything.  Maya still has problems, serious problems.  I am not one of those parents who thinks a good couple of weeks means that the problem is solved.  I am also not one that a few bad things means that everything is crappy.

We are where we are.  I am just going to keep on keeping on.

I don't know what I am going to find tomorrow, but no matter what it is, Maya is, in her own time, in her own way moving forward.  That I've seen with my own eyes.

And that's enough.  

Sunday, April 8, 2012

Courtesy of Elijah

As part of the Passover Seder, after dinner there is the part where you welcome the Prophet Elijah.  It is said that the appearance of Elijah will signal the start of the Messianic age.  So, during Seder you set an extra wine glass for Elijah and after the meal  you invite him in by opening your door so he can enter and saying a prayer, and if you are a Passover Purist you sing the Hebrew Song Eliyahu Hanavi.

We are not purists.  Plus I fear my families' collective singing voices are so bad that if Elijah heard us singing while standing in our open doorway, he'd head for the hills.  But we set the extra wine glass for him anyway.

You never know.

This past Thursday Maya also had her Easter party at school.  The parents are invited to join their kids during the party for a special lunch and then some kind of special activity.  Either Leo or I always attend these parties both because it is fun for Maya but it also gives us more frequent contact with her teachers.  One of the disadvantages of Maya going on a bus to school is that we don't see her teachers every day, so these parties give us something outside of the official meetings to check and see how our girl is doing.

I have always been pleased that during Maya's whole social career, from daycare to her current school, other kids do seem to like her.  She always has one or two kids who are just crazy about her.  I hope that means that she is a likable sort of kid.  She does struggle socially even still, but slowly but surely she is gaining a smidgen of ground here and there.

At this year's party, there were a lot of new kids in Maya's class.  In Maya's school the kids stay about 1.5-2 years in each grade and they don't move forward classically at the end of the school year, but they  move forward when they are ready since each kid works at their own level they hit their milestones differently.  In February, 3 new kids joined Maya's grade 2 from grade 1 and 2 kids moved forward to grade 3.

So when I walked into the party, I was greeted by a few new faces.  One boy, M, a cute little red headed boy, ran right up to me and told me he was Maya's good friend and asked who I was, when I told him I was Maya's mom, he then said, Maya's mom, that means you speak English (as Maya proudly boasts at school that she speaks English with her mom and knows 2 languages).  He was such a cutie pie.  I took my seat near Maya's desk for the party.  A few minutes later I got a big hug from L, that is probably Maya's closest friend at school, a cute little boy that Maya plays with a lot.  He doesn't talk a lot but he is a very sweet, good natured boy and he Maya spend hours chasing each other on the playground with wild abandon.  Later in the day, we ran into H, a little girl who has recently moved to grade 3.  She ran up to me and threw her arms around me.  I asked her if she liked it in her new class and she said she did, but that she misses Maya a lot.

I must admit, it makes me feel very good to know that even though she still might not get the socializing thing right all the time, my girl has friends at school.

We've not done any outside of school socializing with any of the kids as of yet.  Each kid at Maya's school has their own particular set of issues and Dutch people are strange about playdates anyway.  Weekends are restricted mostly to family and close friends of the parents because most children go to school in their own neighborhood which means classmates and friends are a very short distance away on foot or bikes.  Plus, unlike the US, it is perfectly safe for your children to play outside all day so there isn't as much need for parents to become cruise directors in order to ensure that your kid has a social life.

So there's no need for play dates.

Unless you are raising a child on the autistic spectrum who doesn't have many friends and occasions to socialize.

Then you are screwed.

A few months ago at one of the parents' nights a few parents were lamenting the fact that their children do not have friends outside of school and someone suggested passing around a telephone/email list of all the parents so that contacts could be made.  For years I have been incredulous that the schools don't do this anyway, but things work very differently here than in the US in this respect.  The Dutch are big on their privacy.  So at school the only way they would put together the list is if all parents agreed to it, and since the Dutch apparently don't find the need for this sort of thing, it never happened.

At the parents' night I had the opportunity to meet L's mom.  She in particular was the one that suggested the list and talked about how L has never had a play date.  After the meeting I introduced myself to her and gave her my business card and told her that if she ever wanted to organize a play date between L and Maya to contact me.

That was in November.

And if you thought it was challenging to deal with a kid with special needs, organizing a play date seems very daunting.  I've been reluctant to pursue it, largely because I have virtually no contact with the other parents at school since apparently no one wanted to exchange contact details on a telephone list and also I don't have any real information about what other kids' special needs situations are.  Can they even handle a play date, will it be too much for them, too much for me?

And the few play dates we had haven't really led to anything.  Case in point, at Maya's former school she was very good friends with a little boy, D.  D and Maya really loved each other and they, to the best of their limited abilities, were very good friends.  They needed a lot of supervision but they also had a lot of good fun with each other.  D's parents lived just a couple blocks over from us so it was the perfect situation to build a friendship, or so I thought.  Once when there was a bus strike we had to shuttle the kids back and forth to school and Leo met D's parents at school and we arranged to car pool them.  A couple of times I mentioned getting the kids together after school and I got a positive response so we organized a play date on a Sunday morning.

I don't know what happened, maybe D didn't have a good time but considering how those two kids laughed their heads off together and that he cried when it was time to go, I find that hard to swallow.  D's mom was initially pretty nervous about leaving him with us, she asked me if she could stay for a while to make sure he was okay and finally she got comfortable with the idea of leaving, she asked me about 100 times if I was sure I could handle it.  She didn't give me a lot of details, so I had no idea whether I could handle it or not, but I just kept telling her yes, not to worry.   D's mom did tell me that he was prone to giant meltdowns and that he was on medication.  I'd never seen him be anything but sweet but I trusted that D's mom was probably afraid of leaving me to deal with one of his meltdowns.  Finally I told her the decision to leave was hers.  I felt confident about the situation and if something happened I would certainly call her immediately but that ultimately the decision was up to her.  Finally she did decide to leave.

Everything went just fine, no issues at all.  The kids had a great time and although they did need constant supervision, everything went great.  After 2 hours D's mom picked him up and promised the next play date would be at their house.

An hour or so after they left I noticed that D left his jacket behind.  I texted his mom about it and heard nothing.  A week later a second text sent by me offering to drop the jacket off at their house.  A week after that I got a short text response telling me not to worry about it, they would stop by and pick it up.  I texted her to remind her a week or two later and nothing.  Never got another call, never got that invitation.


They apparently left our house and crossed the border.  Never to be heard from again.


After this I started getting a little gun shy about playdates from school.  Maya is a pretty easy kid but a lot of the kids she is close to at school seem to have bigger issues than she does, although I have no real knowledge of their situations.
I just decided to leave well enough alone.

And then (cue music)--

Last night after the Seder finished, after we opened our door and our hearts to Elijah the most incredible thing happened.  I went upstairs to bed and checked my blackberry and saw I had an email.  Thinking it must be an announcement of another sale at the Gap or a news subscription, I was shocked to see an email from L's mom asking to organize a playdate at her house for Maya and L.

So maybe Elijah didn't enter our house last night but perhaps he sent something even better.

A friend for Maya.



Thursday, March 29, 2012

Honey, have you seen the instruction manual?

During this school year I have been looking for an extra curricular activity for Maya. Unlike the US (at least the metropolitan areas), there is not a veritable cornucopia of activities for kids with special needs.  For a while now  I have been thinking that she might be ready to do something outside of just swimming lessons.  Maya basically goes to school and comes home, while all those around her go to sports or karate, dance, music or art lessons.  Maya is interested in a lot of different things and as hard as it might be, I feel like she might be ready to slowly try something.

I spoke to a friend of several months ago, an avid equestrian.  He has his own horse that he stables here in town.  I told him that I was looking for something for Maya and he did suggest horseback riding.  Horses are very comforting for special needs kids and often there is an innate, natural bond between horses and autistic kids.  After considering it last year,  I decided to leave it, feeling that getting up on a horse would cause Maya a lot of anxiety.  I couldn't, at that point, even to get her to ride one of the horses on the merry go round, and I figured that if I cannot get her on a toy horse, that getting her on a real one might be even harder, I thought sports might be a better fit.

We have tried out sports at a special needs sports center near her school.  Once a week for 6 weeks Maya has spent an afternoon there with her classmates, trying out different sports both to promote sports (as lack of exercise is a concern for a lot of special needs kids) but also to try and evaluate whether a child develops a liking or has a talent for a particular sport.  I am very grateful to the school for organizing this and although Maya has enjoyed herself there, what she mostly enjoys is being able to run around.  She is still rather unfocused and spends most of her time not doing the particular sports activity, but enjoying being able to run around and yell and play.

If only running around and yelling were a thing.  

So that brought me back to the horse option.  

I do think it might work because Maya loves animals, all animals.  She knows a lot about them and learning about them and animals are a source of comfort for her.  I've mentioned before that at times Maya scripts, engages in spouting out facts, or dialogue from movies, tv or her pretend play as a way to reduce anxiety.  A lot of her scripting these days has to do with animals.  She will play with her stuffed penguins and tell them what they like to eat, how they move around and sleep based on what she knows about them.

So, I have a reasonable hope that an activity involving an animal might work for her.  

Close to our house there is a stable that has lessons for special needs kids.  It is on Saturday afternoons for a half hour which seems perfect - Maya won't be able to focus longer than that.  They let you try out a few lessons without committing to make sure your kid really takes to it before you have to make a real financial investment.  So I can just pay for a couple lessons at first and borrow the hat and other gear you need so if Maya doesn't like it, we haven't mortgaged our retirement on something she may end up hating or be too afraid to do.    

So, I called yesterday to find out some more information.  

And then comes the question.

First they inquired about Maya's special needs.  I explained to the woman on the phone that Maya had PDD NOS.  And the woman I spoke with said that PDD NOS is not considered an intellectual disability (translating literally from the Dutch term). She explained that these classes were for children with intellectual disabilities, for instance children with Down's syndrome or kids who had a serious cognitive delay.

So, I had to explain to her that autism takes many forms and that some kids with PDD NOS or another form of autism sometimes have no cognitive impairment and go to regular school, while others like my daughter, have cognitive impairment and go to special schools.  They asked me where my daughter went to school and I told them the name of the school which she didn't recognize and it wasn't until I mentioned that some of my daughter's classmates had Down's syndrome that her tone changed from why are you bothering me to oh perhaps you have called the right number.  

Down's syndrome as a selling point - that's a new one.

It wasn't lost on me that for the first time being considered low functioning is some kind of benefit.

Many times when I meet new parents online, particularly Americans the first thing they ask is whether Maya is high functioning or low functioning.  

I must say that in the Netherlands they don't really use the terminology high functioning or low functioning.  They more focus on a child's abilities and evaluations rather than finding a label to classify kids.  That sounds like a good thing and I guess it is, not to warehouse kids based on some rather arbitrary definition.

I think in the Netherlands it is not so much that they don't want to box kids into a group, but here everything runs off the IQ Test and where you are is where you are.  If you fall into the quote-normal range-unquote then everything is okay and if you fall under that you are considered handicapped to whatever degree you are based on your IQ score.

It's warehousing in a less specific way.


Maya's IQ recorded via the standard WISC test is 71 which puts her in the mildly cognitively impaired range.  First of all I am a person, who long before having a special needs child felt that IQ's are not an indication of much.  But it is what they have here, they don't recognize any of the non verbal IQ scores.


I love Maya's school, they are really good people, who are really committed to the kids (to the degree one can reasonably expect non-family members to be) and she has made good progress there.  One of my fears though is because she is in an environment for cognitively challenged kids, in some way she has already been written off, labeled as impaired which means that no one is pushing boundaries for her.

Please don't get me wrong, I am not trying to say that Maya should not be in the school she is in.  I know that where she is in her development that she could not be in a mainstream environment, I don't know whether she will ever be able to successfully function in a mainstream environment, be it school or working or living independently.  I know right now a mainstream environment would confuse her, would frustrate her and she would stop progressing and start withdrawing back into herself.

But I also don't know for certain that she will not one day be able to function successfully in a mainstream environment.  And there's the rub.

What do you do when your child doesn't fit the mold of high functioning or low functioning?  What do you shoot for, what are your goals?

What is the freaking end game?

Maya is not a savant, she is not a genius with a few oddities, there are some things she does well but so far we have not discovered some genius ability or innate talent which would help to perhaps find a direction in which to push her life into. Maya is a sweet, bright-although-not-always-in-a-book-smart-kind-of-way, kind, courageous child.  Every day she pushes outside of her natural rhythm, she goes against what her innate nature tells her and does things a different way.

She is a warrior.

But she fits no mold, no category, comes with no manual.  There is no way to fly but by the seat of your pants.  There is no way to know.

So what am I going to do?

I am going to look into horseback riding lessons.