Be warned, this is a long blog post! Feel free to fade away now (can’t say that I didn’t warn you)!
This self-created Autism Photo Project is free therapy for me.
There. I said it.
Yes, I could pay a professional therapist to listen to me, and provide me with some probably very effective techniques for de-stressing and reforming any negative thoughts I have about autism. But most therapists don’t have autistic children, nor does any doctor really have a clue what the heck autism really is, biologically speaking, and how it can be prevented/treated. So while I may walk away with some handy breathing techniques, I wouldn’t end up with much that I could consider concrete/evidence-based/guaranteed-to-do-the-trick.
So what’s an “Autism Parent” left to do? Seek out our own level, much like that water truism. We find each other somehow, thanks in large part to the existence of list-serves, Facebook, and the occasional Little Black Book of autism, where one mom introduces you via email to another friend who won her IEP battle/trained her child not to do XYZ/sent her autistic child to college! And gradually, we find ourselves as members of a quiet army.
Once I started accepting and revealing my son’s diagnosis in late 2010, I was absolutely amazed to discover just how many parents – by the very definition of that whole 1/11o boys have autism statistic – in a one mile radius from me were bringing up a child with autism. And despite the plethora of “my kid said the darndest thing” posts by local parents on Facebook, there was indeed a group of parents sprinkled in among Capitol Hill’s high-achieving families who were struggling with much more basic issues, like how to get our children to acknowledge the fact that another person has said “hello” to them.
During the last year I have subscribed to many list-serves, started a local support group, and reached out to total strangers to invite me into their homes so that I can document how they struggle. You’d think that the last part would be the hardest part to accomplish, but I have been surprised by how willingly people have allowed me into their homes so that they can have a chance to share their stories with the world. I am equally awestruck by their trust in me and the good-heartedness of random readers on the Internet, who will read their stories and learn without judgement.
I met Yetta as a result of all three of last year’s “get out there and join!” efforts. She created the DC Autism Parents group, an officially minted 501(c) 3 that provides resources, and support to other parents who may be staggering around with the weight of autism on their backs. She is a wise, infinitely patient mother who has been at this game for longer than me, and who was gracious enough to allow me to capture her son Aidan on several occasions for my photography project.
This is my son, Aidan. He is eight years old, and he is living with Autism.
I loathe the term “autistic” because it is an adjective, a term that describes who Aidan is. But there is more to Aidan than his autism. According to dictionary.com, autism is described as “a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment”. YES, Aidan has delays in his speech, and YES, Aidan can be rigid. BUT – a BIG BUT – Aidan is MORE than just a word.
He was initially diagnosed on July 7, 2008. Prior to his diagnosis, Aidan was diagnosed with a receptive expressive language delay in 2007 by a private speech and language pathologist. (I often look back and joke that I mourned the language delay, not the autism diagnosis.) When I first started this process/journey (many of us call it a journey that is never-ending), I did not know anyone who had a child with Autism. I had no clue how to navigate the system. Thank God, people were brought into my life, who assisted me in learning about this process, even if it was a small pieces, like “you need an advocate”. I would follow up with everyone I could possibly think of…this is how I operate, this is who I am.
Now, I look back, and think about how far we have come. Aidan is now saying hello spontaneously – not just to me, but to other people. We were in the Whole Foods about a week ago, and Aidan spontaneously said “Oh hi” to a lady and her daughter. And the lady smiles and said hello back. I can remember him not saying anything. I can remember his backwards wave, where he would wave to other people, but his palm would face himself. He would see everyone else’s palms when they waved, so he thought that he was waving correctly.
Maya photographed us on three separate occasions: during Aidan’s weekly therapeutic horseback riding session, at our bi-monthly Autism Buddies program, and lastly, in our home.
Prior to mounting the horse, Aidan’s favorite grooming activity is using the hoof pick to clean the horse’s hoofs. Aidan wants to get on the horse almost immediately, and gets impatient with telling his instructor whether the girth is tight or loose. We stay consistent and ask him every week though. Once on the horse, Aidan settles in. Of course there is the occasional hand flapping or his infamous “hand puppets” when there the instructor and aides (which includes myself) need to take a break and reset.
[Note the “hand puppets” that Aidan uses, just like my son Max. I am stealing this term from Yetta.]
Aidan has been receiving riding lessons for a number of years now and has come a long way. He now knows which day of the week we have his lesson, and will even say to my mother when he gets home from school “ride the horse”. He is so excited that he often puts his helmet on while I am driving to the lesson.
[I love what these images illustrate, which is the fact that our children – once diagnosed, and if lucky enough to have parents with the resources – are literally surrounded by a team of therapists, aides, doctors, babysitters, etc. We create our own village and turn to all of these people for expertise…and for their shoulders. I am continually amazed by the sheer number of people who have been brought into our lives via autism.]
During a session, Aidan does a series of stretches to get him ready for the ride. Aidan now kicks the horse and tells the horse to walk and to trot. It took us forever to teach Aidan to kick with both legs! He would kick using one or the other but not both at the same time. But now he does kick with both legs and this is a great accomplishment! I am still amazed! Aidan is a great kid! He makes great strides every day!
[Aidan’s riding therapist is in high demand. Apparently people wait for years to get the chance to work with her.]
Aidan will also turn around on the horse to ride backwards, which provides another form of sensory input and balance challenges. (Aidan only likes to turn around when the horse is still or moving, as he does not feel comfortable doing this while stopped.)
[I have to admit, I got quite a kick out of this scene, which reminded me of some Mel Brooks movie…]
When Maya came to our home, we also worked outside on Aidan’s ball skills. Aidan is getting older and needs to learn how to exercise as a means to modulate his body. So we started seeing a physical therapist last fall who is helping me create a “home program”. We are working on doing sit-ups, jumping jacks, throwing different sizes balls overhead and underhand, etc. It is challenging! Aidan likes to count how many times we throw the ball back and forth. Once we get to twenty, he likes to stop. I have to urge him to keep going. Every moment is a teaching experience.
[After spending time with Yetta and Aidan, I am reminded of how the work may never end. Aidan is older than my son, but, like my little boy, requires constant supervision to stay on task and to make nearly every single moment a teachable one. It’s as if we cannot justify letting anything slide. If we do, we may fail to advance to some important goal.]
Maya also got to see what an afternoon of homework is like. Aidan is currently working on double digit addition and subtraction at school. He does his homework on the floor because the contact with the floor provides input to his body. Often Aidan needs to be redirected because he is easily distracted. I try to sit with him while he does his homework.
Sometimes I don’t have his spelling words prepared, so I have to quickly write them down out of order before he can start to copy them. If he sees them presented in the same order each day, Aidan will memorize those words in that very same order. But he will not actually learn how to write the words on his own, spontaneously. This is one example of how I have to work with Aidan’s school to get creative so that he can learn most effectively.
Another homework challenge, as I said, is Aidan’s distractibility. He loves his iPad and iPod Touch and will sneak in a few minutes here and there to watch Baby Einstein, which drives me nuts, while doing homework. I have to constantly redirect him back to his homework. Also, when I catch him looking at Baby Einstein during his “free time” – which is not socially or age appropriate – I have to redirect him to another website like PBS (he does not watch regular television) or Backyardigans from Nick Jr.
As I write this, Aidan came up to me and said “Hi, mommy. Squishy hug”. Of course I say “Hi Aidan. What do you want? Use a sentence or ask.” Aidan replies, “I want squishy hug!” and then tries to sit on my lap. I have to tell him “No, you can’t sit on Mommy. You are too big.” (A squishy hug is a really tight hug that I give him so that he can get some sensory input. He is really motivated by these, which is why he requested one again after I prompted him for a more specific request.) As I said, Aidan is eight, and is now up to my shoulders in height. He is so sweet, but he does not know his own strength. The fact that he is growing up and getting bigger scares me, but this also drives me to do something about it. Like many parents of children living with autism, I think about the future a lot. I think about what I need to do to make him a functional member of society, because I will not be around forever to help him.
Above all, I don’t want people to feel sorry for Aidan! I want people to understand. Everyone is different. Everyone learns differently and lives life differently. The other day I was speaking with someone and the topic of our children came up. When I mentioned that my son has autism, you know what that person said to me? “I’m sorry!” I’m thinking, sorry for what? Sorry because my child has a disability, I guess. The reality is that I am sorry for them. I’m sorry that they do not understand that I am blessed to have a child who – although he may be living with autism – has taught me how to love, fight, and be a better person. The reality is that many parents believe that we need to be perfect (which I sometimes still think about myself). But what many of us fail to realize is that we not only teach our children, our child teaches us.
There is a reason we have children who live with autism. I think that the reason I have Aidan in my life is not only to help him, but to help other children and their families who are also affected by autism. Without Aidan, DC Autism Parents would not exist. He is the reason that I volunteer my time to not only create programs through this group, he is also the reason that I had Maya photograph us, why I got the chance to write this post, and why I speak to local university students, and attend meetings where I serve as a stakeholder in the DC Autism Community. I believe that if I want to create change for Aidan and his peers in the broader community, that change begins with me. It takes great sacrifice to put yourself “out there” for people to scrutinize and judge. But the reality is that if I just reach one person, and they understand how much I truly care, how much I deeply love my son…maybe that one parent will join with me in my cause for the greater good of our children.
My job is to ensure that Aidan’s quality of life is high and that he is afforded every opportunity available to any other child in this country. Most of our days are good. Some are challenging. But all are filled with love and understanding. Aidan and I understand each other – maybe not the way that “neurotypicals” might, but nonetheless, we do.
Aidan is Aidan! He is my son, whom I love with all my heart and who I am very proud of!