Sunday, January 29, 2012

A Little Longer

When you have a child on the autistic spectrum, one of the toughest things, in a very long (and for some people unending) list of tough things is the not knowing.

I think about this stuff all the time, or more correctly I try not to think about it all the time.

The not knowing if your child will be able to take care of himself or herself when they grow up.  The not knowing if they will be able to have real friendships, relationships, will they ever be able to handle marriage and having children of their own.

This morning while Maya was getting dressed she told me when she grows up she is going to have a baby, which was an answer I gave her two years ago when she asked me about when the time is that you have a baby.  I rather flippantly said "you will have babies when you grow up." Now Maya´s literal mind completely synonimizes (yes, I´ve just invented a word) growing up with having babies. Like white on rice, whenever someone mentions the words growing up she retorts with having babies.  And yes, I am kicking myself for ever having answered that question that way.  Next time someone asks me that the answer is Never!

So when Maya told me today that when she grows up she will have a baby, I gently asked her if she would like to have a baby and she said she did.  I asked her what she would do with a baby and she said she would play with it and love it.  I asked her if she would feed it, and she said she would.  I asked her if she would comfort a baby when it cried and changed the baby's diapers when it has pooped or peed.  She kind of got a blank look on her face and then sauntered off and got interested in one of her toys.

Maya's associating growing up with having babies is innocent enough banter at her age and I don't think there is an 8 year old who would really know how to take care of a baby (I was 38 when I had Maya and had no idea what to do).  But I would be lying if the question of whether Maya will actually be up to the task of rearing a child or if her autism will prevent her from experiencing motherhood or even worse that if she would have a child, the challenges her autism would present would be too much for her.

Luckily I don't allow myself to get too bogged down in these what-if questions.  I really try to deal with the here and now rather than the what-ifs.  The what ifs are too tough and I have enough on my plate to deal with without having to worry about problems that are not here yet.

It's about the here and now.

At this point we are still trying to master zipping up our own coat and to manage to get out the door in the mornings without making the bus driver wait ten minutes while Maya insists on telling me some important fact about Fozzie Bear or while she runs upstairs to decide which of her animals has to go to school.

We have mastered Maya brushing her own teeth though and I am very proud of that, how instead of me having to threaten, cajole and bribe, Maya dutifully on her own goes into the bathroom and brushes her own teeth.  And I was so proud that in December she went for a checkup at the dentist and had no cavities.

So we are getting somewhere.

And we are a long way from having to worry about babies.  Maya is still a baby herself.

Now before you go giving me the in-the-blink-of-an-eye-speeches, I know that tomorrow she will be grown up or a teenager and I will have to worry about this and so many other things.  I get it.

She is growing up and I can see that slowly she is shedding the interests of baby and toddler hood and maturing ever so slightly.  Maya has just developed an interest in pop music and can spend hours dancing with our au pair to music videos.  She has also become very interested in our au pair and her girlfriends who are frequent visitors at our house.  It's cute to see her follow them around, and imitating their slang and mannerisms, Maya clearly idolizing them just like a little sister would.

For the most part though Maya has the maturity of a 5 or 6 year old.  She still loves to play pretend games and is just starting to understand the concept of playing a game where you take turns.

And I do know and realize that as Maya gets older, even though she is making progress, she is by no means catching up to her peers and actually the gap is widening and will continue to grow wider as she gets older.

For a very long time I had hoped that something would just click and Maya would catch up and be nearly at peer level in most things.  You see that sometimes that there are just some kids that take a little longer.  But as time goes on I try to dance the dance of acceptance without giving up the hope that if we continue to love her, build her confidence and let her take her time and her own unique path that she will find her place, find her special talent and her gifts.

I live a lot in appreciating the "now" of things.  That is one thing that having an autistic child has taught me, to appreciate the now of it all.

My darling daughter is beautifully joyfully still a little girl in every way.  At 8 years old when many other little girls are becoming pre-tweens and into Miley Cyrus or whoever is the cool tween at the moment, my Maya is still into Thomas the Train, Bambi and playing with her stuffed animals and Playmobiles.  She still crawls into bed with Leo and me first thing in the morning and tonight when taking a shower, she hugged me the entire time while I washed, conditioned and brushed her hair, saying over and over, "I love you mommy, you are sweet mommy."

So, while I don't know what the future will hold for Maya and I worry about what adulthood will look like for her, there is a lot to love about the now.


  1. awwwww she sounds so wonderful and magic - Just like R who also at 7 is full of babiness
    While I would NEVER wish autism on anyone obviously - one of the compensations of autism to me has been how I get to enjoy his childhood in slow motion

    1. l feel exactly the same, wouldn´t wish autism on anyone but embrace those compensations. I find embracing those things helps me cope and not fall down the rabbit hole.

  2. Katie wants to get married and have babies when she grows up. Maybe she will and be completely successful. I try to think that way, when things are not bad. When we are in the pits I can't see her doing anything but living here forever. Will she overcome that? A lot of parents do think about the future, but a lot of the time I prefer to just stay in the present. It's too hard to let go of MORE dreams for my child already...especially when I don't know if I really have to.

  3. I hear you Jen, I still find the letting go of dreams so tough which is why dealing with the present is way more preferable than worrying about the future. I think the only thing we really can know about their adult lives is that we just don´t know anything. We don´t know what might happen both in terms of our daughters´ development but also what discoveries will be made in autism over the course of the next decade and beyond. I try to accept where Maya is and understand that her challenges may have a lasting impact on what kind of life she has as an adult but not give up on her or on hope. It is sometimes a delicate line I am dancing across and of course not always easy.

    Thanks for commenting.