A Farewell; A New Beginning
Filed Under (Adam, Advocacy, Writing) by Estee on 28-10-2010
I am remembering the days when Adam watched endless reruns of The Sound of Music. I actually think he had a crush on Maria, with her sweet voice and blonde hair. From the time he was a year old, some of you might remember this story from Between Interruptions: 30 Women Tell The Truth About Mothehood, Adam watched Maria and the Von Trapp family intensely during his first birthday party. He still relaxes everytime I sing songs from that movie, usually as he tries to get to sleep.
I’ve written a lot about Adam over the years, carefully finding the right vignettes to maintain some semblance of privacy and dignity. Sometimes I simply gush. While there are some struggles, as a one-time-mom, I cannot help but relish in everything Adam does. He is, and I’ve heard this someplace else, my heart literally walking about the earth. Although autism is important — we’ve had many valuable discussions through our blogs — it also doesn’t matter in the way I love my child. Adam is Adam, and he has brought me great joy.
Forgive me for the slow-coming blog posts these days. I have been thinking a lot about Adam and this explosion of language, his talking, communication — his expression of feeling and will.
I’ve also written occasionally on how to write about our children and of course I am thinking a lot about this now. I acknowledge that Adam is not a willing participant in this, although I’ve tried to get his “permission” to write about certain things. It seemed tenuous in that his communication was difficult to come by. I would ask Adam to type a yes or no to certain things I wanted to make public. It was sometimes difficult to tell if his yes was intentional as he would either quickly point, type or even say a “yes,” in an effort to fulfill my need for an answer. This has changed in the last while. Adam’s intention is much clearer now.
In my last post, I wrote about watching Adam express his will in “early intensive” therapy. Although I was emotionally attuned to him, I see his intention even more now watching videos in retrospect. Therapists talked too loud. They didn’t sit and listen. They didn’t join in with him, early on, in his version of games and communication. Amidst a mish-mash of discrete trials and play therapy, I heard a faint “don’t” in the video when a therapist tickled him. I am certain, as much as I like to think I am listening to Adam, that I spoke too much and didn’t give him a chance. I’m certain there are moments I also didn’t hear him. Children are often not listened to. Non-verbal autistic children are, for the most part, ignored.
Still, while I must lay down some rules for his safety, Adam also needs a safe place where he can express himself, to me. For Adam who may read this when he gets older, I hope he will understand (and perhaps forgive…or maybe he will cherish me for this, I cannot predict) his mother’s need to express herself. I began blogging in 2005 (fomerly joyofautism.blogspot.com) during a time period that was highly volatile and polemic in autism, and in an atmosphere where everyone wanted to change Adam, simply because he is autistic. I’m not saying this atmosphere has changed. I have, however, changed. As Adam’s mother, I value the learning of discipline, rules, and being educated equally as much as finding one’s own way, creativity and uniqueness. We all must learn it and so, Adam was born perfect.
Although I still wish to feel his feather-like hair brush against my face, and although I still want to hold him like my baby, he is no longer. He is expressing his sincere need for independence and his need to be heard. I search his face for that baby I birthed and I see an older boy take his place.
I want to say farewell, not to blogging or writing about autism necessarily, but perhaps to a type of blogging where I made certain assumptions, and a type of writing that talks about one’s child as a cherished baby. Adam and I, in addition to all the changes we have experienced that have formed us today, have entered an entirely new phase. I’m watching how both my outlook and writing will too.
So, I will continue to choose my words carefully. Here, I mark a new era.
ESTÉE KLAR
I know what you mean about thinking your child is like a baby because he doesn’t talk. I look forward to many blogs about Adam The Boy. Congratulations on getting him to the next stage: I feel a little bit jealous but I mainly feel inspired to work harder to get my two guys talking.
Alain,
While I understand your comment on the one hand, I feel compelled to ask you not to feel jealous. There is absolutely no panacea.
I believe the key is to encourage, not force communication. We have to attempt to understand the style and uniqueness of our kids. Remember those piano lesson days? Remember those teachers who really whipped theory and practice into us? Well, for me, it really turned me off of learning classically, and I was seriously considering studying music at The University of Toronto. Instead, I ended up doing my own thing, which is learning to play by ear. Today, I’m just studying it on my own. Sure, I lack a lot of skill, but I just didn’t have a teacher who could reach me. Believe me, I was so musically inclined and active.
I also had a B^&%$ of an art teacher. I didn’t like her either. Although I did well in art, I also steered in my own direction. What reaches me are people who enter gently and reach into me in order to develop the inner strength and desire to create.
It is a combination of both practice, discipline and most of all, finding the right way for the person. I think mentors are really imporant. We all remember who really inspired us to get to the next level right?
I may be digressing a bit, however, if I may since you are here on my blog, you might wish to try various methods such as introducing your kids to PECS (if you haven’t already), talk back devices (I highly recommend the autism apps for the iPad because they are cheaper than Vanguards, Vantage Lite and Lightwriter. Read all of the time to your kids. Sing your sentences a lot since rhythym is a key to language as well. Rhyme, poetry… all great.
I’m not sure how old your children are, Alain. Remember Adam is 8 1/2 now. He still really struggles with his communication, although we have seen this spike. I believe autistic people like Adam require various methods of communication available to them because we learn from autistic adults that even if verbal, spoken language often breaks down.
I am happy you feel inspired and I hope you feel inspired enough to try and have fun along your journey.
Wishing you the absolute best!!!
Thanks Estée. It’s funny that you mention art and piano, because I signed up one of my two autistic kids for art and the other for piano. I’m just trying to tap into their obsessions (art boy draws all the time and piano boy loves music) and I think we found the right kind of teachers to not put them off early.
PECS get a big thumbs down from my family. Singing sentences gets a big thumbs up. What’s the name of your iPad app? I’ll see if I can find the equivalent for Android phones. Cheap is good: most of the autism apps I’ve heard of charge too much in the name of a “charity” I’ve never heard of.
Hi Estee
You reach a lot of people. I’m from India and I love your posts. Please don’t stop blogging!
When one door closes another opens — it’s a cliche but so true. The autistic organizations appear to be so far behind in applying child oriented devices to aid in their communication. When I saw the IPad loaded with the programs for children it was an eye opener.
In the community I interact with most, there are a lot of people who say repeatedly that autistics speak for themselves and its the job of non-autistics to listen. There is definite truth to that. But they are adults or teenagers.
When they are young and in our care, there is a time as parents when it is our job to speak for/with our children. Whether that child is autistic or not, parents are in that position. It’s for/with, not just for. Not just with.
That period of transition, between when our voice was first to that when the child’s voice is first (with/for) is a struggle. And it leads to simply ‘with’, when they reach maturation and no longer need us to speak for them at all.
I think Willy has made it too easy for me. Whenever I try to talk to him about it, he pats my cheek and says, “I trust you, Mom.” I wonder when that will change or if Alex and Ben will be so gracious.
I will not stop blogging. I’m just tentative about how I write and what now is interesting for me. I am also working every day on something, so it takes away a bit from the blogging for the time being.
Alain, there are quite a few apps for autism (I like this alliteration). Here is one link: http://www.gadgetsdna.com/10-revolutionary-ipad-apps-to-help-autistic-children/5522/
Also just google it so you can decide what might work best. It seems to me that this may completely wipe out the more expensive devices out there. It seems to have everything, but the jury’s still out on my end.
PI have been reading this bog for years. My son is the same age and it has been so reaffirming some how that your path is reminiscent of our own. While our sons have had totally different lives, approaches and cultures we have hit the big milestones finding similar truths. I have a younge
This decision seems very wise and I’m happy to follow you in this new blog experience.