Saturday, March 12, 2011

And who said McDonalds wasn't healthy?

Bring it on Coach!
We are getting closer and closer to launch.

Maya starts her new school on Monday and it has been a pretty good week.  This morning she woke up and asked me if she has school today, when I reminded her that it was Saturday and there wasn't school, she got upset for a minute, stomped her foot and whined that she wants it to be a school day.  She quickly cheered up when I reminded her that on Saturday she goes shopping with Oma (Grandma) and Leo and it is the rarest occasion (like a nuclear holocaust....maybe) where she doesn't come home with a new book, toy, dvd or trinket from that little trip (judging moment right here).  Nevertheless though she has been just a tad more clingy and whiny than usual although considering how big a change this is for her it is to be expected.  I do think she is looking forward to the new school.  I have tried to talk to her several times this week but she has shied away from talking about it and I don't want to push her.  The other day's visit at school helped but no matter how you slice it, this will be a big change for her.  For a child like Maya, where the world is often a scary place these changes can shake her to her very core.  She has grown up a lot in the last year and is stronger and braver than ever but I don't think the fear is any less, just her ability to push through it is higher.  So, without her telling me in so many words, I know this is a scary time for her.  So we are trying to make home as calm and easy as possible, and yes, we are indulging her a wee bit more than usual as well (another judging moment, come on, I know you want to).

This morning after I pushed Leo and Maya out of the house as quickly as possible so I could relax  Leo and Maya left  on their Saturday ritual, I started looking at one of the 237 brochures we got from the school on different topics.  One of them in particular held my interest.  It was from the Ronald McDonald Foundation regarding their athletic program for special needs kids.  When we got the brochure Leo told me that a friend of his, is a tennis teacher and personal trainer.  Leo told me that he has just finished a training on how to teach athletics to special needs kids and he is going to start working with one of the Ronald McDonald Foundations in the Netherlands and the group he is working with goes around to several of the special schools in the area and helps the teachers to teach gym class to the kids.  Like in many areas, athletics presents challenges for special needs kids, they need more individualized attention and time to pick up skills and techniques and  Ronald McDonald Foundation helps to provide that extra support.  So Leo's friend will be teaching at two different schools and one of them happens to be Maya's.  Despite being my child, Maya seems to be athletically inclined.  She loves to run and my brother in law, who was a semi professional runner has always said Maya has aptitude for track.  I have often thought of enrolling her in some kind of athletic program but it just seemed impossible given Maya's challenges.  Leo's friend told me that the foundation that he is working with also offers extra curricular athletics for special needs kids as well and that could definitely be something we could enroll her in after she is more settled.

I never was involved in athletics as a kid.  My parents didn't push athletics (or really any extra curricular for that matter) and they were not the kind of parents who would come to our games or things like that.  It's not that they didn't care but they were just caught up in their own things.  Therefore I didn't really have the desire to do things like join sports teams or play an instrument or do dance.  I was in my senior class play in high school which I loved doing but believe me on how hard it was to try to avoid my friends', classmates' and other parents' pitiful stares when my dad wasn't in the audience to watch me.  The worst part of that was not that he wasn't there, but that people felt sorry for me.  There was no way I would subject myself to that through an entire volleyball season.  Mostly I stuck to extra curriculars which were not spectator sports (no pun intended) so I could avoid those awkward moments.  Plus, certainly when it came to athletics I always had two left feet and wasn't very coordinated so I was sure that sports was not only a waste of time for me but also another potential source of ridicule so I steered away from it.  I loved swimming as a kid and swam as much as I could in the summer, when we lived in Miami I swam every day and when I was in high school I often swam in the evenings at the college's indoor pool but I only did that for myself.  The cards were just stacked against me with respect to athletics.

Now I am not one to live with regrets as they bring nothing positive to your life, but in hindsight I think it would have been good if I would have been pushed a little bit toward athletics.  Maybe it is just my love of all things Friday Night Lights, but  I think athletics is a good metaphor for life and I would probably have a much better attitude toward exercise if I would have been pushed even a little bit to explore my physical capabilities.

So I have frequently thought I would like Maya to be able to at least explore her physical abilities through athletics but up until now that has just not been possible.  Maya can get overstimulated and really needs her down time in order to be able to focus in school so we have been very careful not to involve her in other structural activities because we have felt it is too difficult for her and because we have feared that she won't be able to pick up on what she needs to do and will just spend the hour or so running around, not listening and being another problem that we have to solve instead of something which will be fun and a source of inspiration for her.

Leo's friend told Leo that RM Foundation's athletic programs are really especially geared for kids like Maya who need extra attention, help and have a hard time following set expectations.  He said it is very low key where they observe a child for a good 3 month period of time and let them try different activities to see where they may have natural abilities or if one type of sport is more amenable to a child than another.  They also work together with the school to make sure that her time sporting doesn't have any negative effect on her school life.  They also offer some summer programs as well during the school vacations.  He told Leo that he thinks something like this would be really good for Maya and in this setting the demands would be tolerable for her but could also further help to build her confidence.

It has always been a source of sadness for me that Maya has not taken any lessons outside of school.  I see our friends' kids going to soccer, swimming, dance, art and music lessons and it always has made me feel sad that Maya doesn't have that in her life right now.  I think that is compounded by the fact she is an only child.  She doesn't have a built in playmate (or someone to fight with) and given her social issues I sometimes feel she is too isolated.   Maya is fine with it, she is happy because she is just a happy child and  is mostly happy where ever she is and can find something to entertain herself (even if it is pretending that dust particles in the air are butterflies --hmmmm, I need to clean).  But the vicious circle for us is that we feel she needs more opportunities to socialize but given her problems around socializing putting her in those situations is often counter-intuitive and causes her to be even more isolated.  Not giving her what comes so easily to other kids, in this case, extra curriculars is really one of those situations where Maya's autism makes me very sad.  Not only the differences between her and other kids but because these situations are so difficult for her and we haven't found a way to do it which will be good for her and will allow her to be less isolated,  it is so difficult for her to gain the self confidence and sense of achievement and excellence that these kind of activities can bring to her.  Irony all over the place today.

After today's phone call though, I see that doesn't have to be Maya's story and on this grey Saturday in Amsterdam a world of possibilities, courtesy of Ronald McDonald may be opening up again.


  1. Dana, the only advice I could possibly give you in this matter, is to slowly and gently expose Maya to any new experience. If she retreats, then honor her wishes. Don't give up though, one day the stars may all align in a way that resonates with her and it may suddenly click.

    If that day never comes, and you still see a happy, content, peaceful child - then give her all the love and support she needs in her own space. I would give this advice to any parent - not just the parent of an autistic child.

    I've learned the hard way too, that as much as we would love to share the experiences that gave us joy and fulfillment - that our kids are not US. Sometimes, as they grow older and can see through us, they will push back and assert their individuality with a vengence.

    The hardest lesson I came to learn in life is to let my children just be. Scares the crap out of me sometimes - but that's just the way it is.

    Thanks for sharing your journey, Dana.


  2. We have tried every sport/extracurricular out there, and 99% of them have not ended well. The one place where she is happy, where there are no meltowns, is in the water, and she does well in swimming lessons. It's about finding the thing she really loves, and there will be something, and focusing on that. No, Katie won't do 5 different activities, but I am glad she has one that makes her happy. We have tried the special needs programs in the past, but she knows there are "regular" programs and wants to be like the other kids, and so we had to find something she could do that was with her typical peers.