Sunday, August 14, 2011

In Support of the Double Edged Sword

I often get up here on my little cyberspace soapbox and talk about my daughter.  As a matter of fact she is the subject of most of my posts.  Blogging about her and the things we go through, the ups and downs helps me tremendously in coping with her situation.  I´ve blogged about highs and lows, positives and negatives, my doubts and fears.  Writing about it helps me to process it, to put it in perspective, and I am convinced that turning to the blogosphere has in many ways made me a better parent.  Not just in what I write but in what I read.  I am amazed and inspired by other bloggers who are also dealing with a child, or children on the autistic spectrum or with other special needs.  I have found comfort, understanding, camaraderie (in that cyberspace kind of way) and have recognized my own child and our experiences when reading about the experiences of others, parents like me trying to understand, help and navigate our way through the autistic spectrum.  I see similarities and differences with other blogs that I read.  I am grateful at times to recognize similarities among Maya with these other children and at other times I am grateful to find differences too.  I am glad I started blogging for many reasons but chief among them all is that it has brought me to so many other gifted and talented parents going through similar experiences and being brave enough to share them with me and the rest of their readers.  Sure, I wish I knew the secret of getting people to comment more on my posts, but so it is.  

I´ve said many times before that I have a hard time separating Maya from her autism.  Sure there are certain things or characteristics or the way she says, does or goes about things that makes me pause and say, that is the autistic part of her but all in all it is difficult for me to pinpoint where her autism ends and she begins.  It´s all interwoven and while certainly in my dreams for my child I would have not wished autism on her (or us) and I certainly wish her development were in the typical range and I certainly would like to have a little more peace of mind about the future and what it means for her, beyond that it is hard for me to say I wish she weren´t autistic because like I said I am not sure where the autism ends and she begins and getting rid of the autistic part, if that were possible, might get rid of some of the things about her that I absolutely love and adore.  

I often get up here and write about some happening in Maya´s life and try to gain perspective about it and look at hte bright side or mope, depending on my mood, and most of what I post is about her development, steps forward no matter how small, fears that the steps aren´t big enough or at a faster pace, fears that I as a parent am not doing everything I can and on and on it goes.  But tonight when I was getting Maya in the bath and washing her hair, it dawned on me as I was rinsing the shampoo out of her hair, when Maya grabbed my hand as she always does and gives it a fast little kiss before putting her hair back and shutting her eyes tight, that there are oodles of things that I just love about her which I think are also connected to her autism.  And why the hell do I not post about those things more often?

So in an effort to accentuate the positive and have a brief respite from my worries, fears and concerns, here are some things I love about Maya. I am not sure if they are caused by her autism or not, they are just wonderfully, beautifully her.

Her kissy self. Maya has always been a love bug (she loves it when I call her a love bug too) and I thank Dr. Sears for that. When Maya was born Dr. Sears´ attachment parenting rang true for me and I co-slept with Maya, I never let her cry-it-out but instead soothed every cry (to all the Ferberziers among us I ask you to keep your judgment to yourself, I get enough of that at the mall). I often stayed in bed with her for during nap times and our evening ritual was always much longer than it should of been (how I sometimes envied those parents who plopped their babies into their cribs and went downstairs) but I do think attachment parenting has been enormously helpful for Maya. All autistic kids are different, some are cuddly and some need to be held at arm´s length literally and figuratively but I do think practicing attachment parenting has helped Maya to be a cuddly kid, always seeking out love and affection and feeling confident because she knows she always has our attention (even during sleep). And although for years I glossed over the fact of just how often Maya slept in our bed, Dr. Sears was right, she moved when she was ready and now although her sleeping with us is very few and far between I still relish those few mornings when I stir and see that she has crawled into our bed in the night and puts her arm around me or has her head peacefully in the crook of Leo´s arm. Maya loves to kiss us and does it often, when she is playing she will run playfully by me and plant a kiss on my arm or when my feet are up on the coffee table she will give my foot a little peck. I do notice when she is nervous she kisses our hands repeatedly and while part of me wants to desperately teach her that she can handle
anything, part of me adores that her nervous habit involves giving us many, many kisses.

My favorite motormouth. Many people on first glance are baffled to hear that Maya is autistic because the girl can talk a blue streak, in two languages no less. Maya tells marvelous stories and never leaves out a single detail. Whether she is recounting an incident that happened several years before (for instance, the last time we were at the beach or on the train or the last time she threw up) or something that she is planning on doing, she gives it her gusto (and gets annoyed when you try to cut her off or hurry her up) and tells it in full technicolor detail, complete with animal sounds if necessary. For instance just a few minutes ago she came in my bedroom to tell me that in the morning she was going to wake me up, crawl into bed with us and snuggle with us and then ask daddy to bring her breakfast in bed. I asked her to let me sleep a little and to not wake me before my clock says at least 8 and that if it has the number 7 she should go back to bed. Her answer was,

okay, if I come and it says 7 I will only give you a kiss and go back to my own room, but when it is 8, I will wake you up and tickle your arm and give you hugs and kisses, then I will ask you if I can wake daddy up and if you say no, then I will bring you the remotes and ask you to put on Zappelin Channel (the kids channel she watches in the morning) and I will let daddy sleep and only share the blanket with him.

As much as sometimes her chatter exasperates me, particularly when I try the aforementioned and ill-advised hurrying I am still enormously grateful that speaking is not an issue for Maya. In most situations she can express herself well and as any parent with a child on the autistic spectrum that cannot can tell you, it is a big hurdle. And I am very grateful for it.

100% non-stick teflon. While this quality of Maya's is truly a double-edged sword as I wish that some things would stick, I do think that Maya's ability have a duck's skin is one which spares her a lot of grief and sadness and helps her enormously to have high self esteem. I have often said that Maya's autism is like a raincoat in that it protects her from a lot of the cruelty inherent in childhood. Sure, unpleasant things happen, even to Maya, kids sometimes say cruel things to her but mostly she is oblivious to that and she certainly doesn't pay any attention to it. Just on Friday she was outside playing with her two friends from next door, riding bikes to be exact. These kids have long since left training wheels behind but Maya is still riding her bike with training wheels. When she rides her bike she mostly just rides on the sidewalk which surround the playground directly across from our house. Of course as her friends have gotten better on their bikes they ride much faster than she does, for every circle Maya rides around the playground they ride two circles. The other day this fact was upsetting Maya's little friend and every time they rode past the house I could hear her screaming at Maya to hurry up and to ride faster, each time getting more shrill than the next. I kept my eyes peeled to see Maya's face to see if this little girl's screams and shrills were getting the best of her, but each time Maya rode by, training wheels squeaking along with a huge smile on her face. After about 5 circles of this girl's screams the girl and her brother stopped riding and when I walked outside to supervise I caught the tail end of the conversation which was the little girl telling Maya she didn't want to be her friend anymore. I was of course panicked, afraid this would upset Maya as she really does love playing with this little girl. Maya doesn't have a lot of friends and is very fixated on this little girl. If this little girl really didn't want to be friends with Maya I don't know if Maya would understand that or how I would explain it to her. Maya's eyes were downward and I asked what was happening and the little girl told me she was angry at Maya because she wanted to ride bikes but Maya wouldn't ride faster. Then the little girl said to Maya again that she didn't want to be her friend anymore and that she had lots more friends (Danger, Will Robinson). I fought every urge I had and just said to Maya in English, "well that would be her loss then." The little girl (who doesn't speak English) then asked Maya what I said and Maya, not missing a beat said in Dutch "I am a fun girl and if you don't want to be my friend then that is your problem." I then explained that Maya couldn't ride her bike any faster and that maybe instead of riding bikes together they could do something else together like play in the playground or play at our house. They came to our house and what ensued was 2 hours of play, zero conflicts and Maya having a wonderful time. Feeling a little concerned and wanting to make sure that Maya was not carrying any negative feelings around I asked her about it again and how it made her feel that the little girl said she didn't want to be her friend. Maya very calmly said, "Mommy, she was only just saying that because she wanted me to ride my bike faster, it's okay." I know that one day I need to be able to talk to Maya about what happens if someone really doesn't want to be her friend (note to self - look it up) but for now I am grateful that Maya is largely oblivious to people projecting negativity onto her.
And of course there are loads of other things that I love about her, things which make her beautifully, uniquely Maya Like I said I don't know where autism ends and Maya begins, I probably won't ever know that but I do know I have a wonderful, happy, unique, beautiful daughter who experiences life from a joyful place, full of wonder and music, beautiful colors, rainbows and stars. At 7 years old she is living much more in the real world than in that protective world of her own making, as she grows I can see she needs that world less and less and has found ways to cope with what used to make her hide under the table.  As much as I want her to grow and put both feet firmly in this world and be everything she can be, and not have autism represent barriers to her, a part of me never wants her to lose that incredibly exuberant person that she is. The girl just oozes joy.  At 7, she is way happier and more confident than I was at her age and I don't know if that is autism or the differences in our upbringing but whatever it is I want her to hang onto that love of herself and that belief that comes from somewhere deep down inside that instinctively reaches for the special kind of innocence and purity which can be found in happiness.  

1 comment:

  1. What is amazing is that she was so right about the her friend. She didn't take her words at face value and knew she was just upset about the bike thing. That is a good thing. It is far beyond the understanding of other kids her age, so it is something to be proud of. It's not that she doesn't get it...she DOES. Smart girl!

    And we were AP all the way with both kids. K is still a cuddly kid to this day and we have such a close bond I don't think we woud otherwise.