Aftermath

In the aftermath of Mia’s autism diagnosis in early summer of 2008, I didn’t know what to expect. I had spent so many hours reading, trying in vain to figure out what my future would look like or more importantly, what Mia’s future would look like, that I had forgotten what was important. I spent so much time dwelling on this that I ended up completely forsaking the present. It seemed as if there was an endless stream of articles and books to read. I was relentlessly searching for that one book that would hold the key that would unlock the secrets of autism – the secrets of Mia. Some of these writings gave me an infinite amount of hope while others left me feeling as if I were in the middle of a hopeless situation. However, every book I read left me with more questions than answers. I think the reason for this is: Autism has such a wide range of afflictions. The disorder affects individuals differently varying from low-functioning to high-functioning and everything in between (hence the name “the autism spectrum”). So much so, that no two autistic people are alike. They all have different tendencies. They all have different strengths and weaknesses. Some might be bothered with loud noises, whilst others can’t stand bright lights or certain textures. I had so many questions about my daughter. For example, will she ever be able to functionally speak, use the bathroom on her own, or even brush her teeth? The questions were as endless as the pile of books I had on my desk.

Mia, age two, taking a bath.

Unfortunately, they could precisely diagnose Mia with autism, and be a bit specific about where on the spectrum they thought she fell, BUT as far as being able to give me answers to some of the gnawing questions I had they just couldn’t provide answers that soon. It felt like I was being fed a little bit more of the” wait and see” attitude that is so prevalent among pediatricians these days. It was horrible. And although I had accepted Mia’s autism with little trouble I was having a hard time accepting that no one could tell me what, if any, basic skills Mia would possess. I just wanted to know what she would be able to do and the level of dependency she would have on others as an adult.

When dealing with her therapists they always focused on what Mia could do at the moment; telling me her current strengths at every monthly meeting. The talks about the future were limited to mapping out where we would be going with each therapy and what the short term goal of that therapy would be. At first, this bothered me. So what, she can match two identical objects, but will she ever be able to use these objects in a beneficial manner? Okay, so she has a strong pincer grasp but will she be able to use a telephone to call for help if she is ever in trouble? Alright, great, she can now use sign language to say the word “more” but will she ever be able to verbalize a want or need? I wasn’t even noticing how much Mia was gaining I was so focused on what I was afraid of most – her unknown future. It was horrible. I was missing the point. I was missing so much.

(Mia trying hard to block out visual input. age two.)

On top of it all, I felt like a slave driver. From the time my daughter was 16 months old she started receiving therapies. After her diagnosis the amount nearly tripled. My two year old daughter was working all day long with six different therapists. She was doing extensive one on one therapy in a locked-in chair. She was doing speech therapy when she could barely even vocalize a sound on cue (at the age of two and a half.) The only two therapies I looked forward too were occupational and physical; which usually consisted of playing with different textiles (for the former) and going to a park with difficult terrain (for the latter). But the one on one chair sessions were the worst, and the most received, some days she did three hours of work in the chair. There were days when Mia just didn’t want to get locked into a chair for an hour of strenuous work. I hated those days. They were awful. And, I could totally understand. She was, after all, still just a baby at only a little over two years old. She should have been toddling around exploring things, not being forced to work. And for what? I really felt like we were getting nowhere. Ninety percent of the time I was “prompting” her to answer correctly. I felt defeated. I was uncertain. I wanted to give up. But I couldn’t. Giving up on these therapies was tantamount to giving up on Mia – and that was something I could never do. I was just too narrow minded at the time to grasp how important these therapies were, and how far she was coming because of them. It’s hard for me to admit that, but it is the truth.

Then, slowly, things started to change. I started to change. I started to understand, and I started to see the connection between some of the therapies that she was participating in and the future skills she would gain from them. I started to notice she needed less and less physical prompting on the older tasks and was starting to grasp the concept of rewards, making the new tasks easier, and chair therapy more pleasant. I realized that without the ability to use a pincer grasp she couldn’t feed herself – a very real concern for some parents of autistic children. And I was happy she had that skill. I slowly understood that without being able to match certain objects as a pair she would never be able to categorize items – a self help skill used for things like sorting shirts into a particular draw and pants into another. I could finally see that without teaching her the sign for “more” we wouldn’t be giving her any way to be, and feel, independent. Nor, would we be giving her anyway to communicate IF she didn’t learn to speak – a very real possibility for about half of all the diagnosed autistics. I knew, finally, that without ever accomplishing anything within the chair, she would never have been rewarded and without that she would never have been able to grasp the concept of work/reward. An integral part of early intervention therapy for the autistic child.

 

I’m not going to lie, for a while after these little changes in myself I continued to read. To search. I was still searching for that one book, that one paper, that would tell me if my baby would be alright. I never did find it. But time answered most of my questions for me. Mia would be fine. She would continue to make accomplishments. This time, finally, I would to revel in those accomplishments with her.

Since the early days after Mia’s diagnosis, four and a half years have gone by. I still have questions. I still wonder what she will be like and what she will be able to do on her own. But I am now better at waiting for the answers to these questions. I am a lot better at realizing that there are some things we just can’t know. I am much better now at accepting, with joy, the small accomplishments my daughter makes on an almost daily basis.

I was once told that no two autistic children are alike, and although I used this phrase at the top of this post, at the time I heard it, it struck me as very narrow minded since no two people are alike. Why even make such a stupid statement? But, now I know what that woman was trying to convey to me in the softest of terms and it was this: No one can tell you what the future holds. There are no two people that are alike in this world. Autistics are not exempt from this, this rule might apply to them even more. Keep up hope for tomorrow, and keep on working with her. No one can tell you what she can and can’t do. Anything is possible.  

 

(Mia, age two, looking at a red-eyed tree frog with her father.)

 

 

5 thoughts on “Aftermath

  1. Oh heavens another beautiful post never stop writing these. I know there are people who maybe going through what you did and would appreciate this knowledge. Written so well and from the heart again love to you and Mia.

  2. Awesome describing your thoughts , your concerns and your findings.You are not alone in these unanswered questions ,many people are left to wonder what will happen to their children who have Autism. You know that there is no answer that could ever alter your love for Mia , or the way you will be there for her forever as any great parents such as Roger and yourself! And of course myself and Dad!!!Love you

  3. I can’t stop watching the video of sweet baby Mia feeding Prince!!! I loved this post…as usual!! 🙂 Well done.

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