There’s hope and then there’s desperation. Often I am not sure which one is pushing me more. The feeling that with each year Emma grows older, the farther she is from her neuro-typical peers or the knowledge that others have progressed and come so far, therefore so shall she with various interventions. At what point does hope turn into desperation? At what point do you say, okay this is crazy, let’s stick with what we know works and stop pursuing the next treatment option. How do you quell that irritating voice that is always urging you on? Or am I being presumptuous? Perhaps that voice is MY voice and not shared. I always look to the couple of parents I know whose children have made massive leaps in progress. The ones who have bypassed Emma, what did they do, that I haven’t? And many times it seems to be a combination of things they did, often things we’ve tried, but that haven’t helped. I even found myself saying this morning – I’ll keep this appointment with the thyroid doctor, but after this, no more! That will be the last alternative thing we try. But I’ve said this before. I said that after the stem cell treatments. I said that after the QiGong Master and again after the homeopathic doctor. I’m pretty sure I said that after the Cranial Sacral/Shaman too, but I can’t remember for sure. It’s my own version of Emma’s carousel. Around and around we go, where will it stop, nobody knows.
This morning I stood in the shower with Emma, coaching her on washing her hair and body. We’ve done this countless times before. “Okay Em. Grab the shampoo.” Wait while she takes the bottle of shampoo, opens the top and pours some into her hand. Wait to see if she will lather the shampoo all over her head or just on the ends. “Good, Em. Now make sure you get the shampoo all over your head too.” Wait. “Go like this Em. Do what I’m doing.” Demonstrate how to get the shampoo lathered all over, including the hair just behind the ears. Wait to see if she’ll do this on her own. When she does not, help her. “That’s great Em. Now rinse the shampoo out of your hair.” Wait to make sure she gets all the shampoo out. “You have to rinse it all out, Em. You have to make sure you get the shampoo out up here too.” Point to her scalp. Wait. Try to ignore the urge to do it for her. “There, now rinse.” Wait. Wait some more. Wait to see if she will do it on her own. Try not to help if it isn’t needed. Try not to do things for her because it will be easier, faster or because I’m tired or just don’t want to watch her painstakingly try, only to still require help.
At what point will these instructions no longer be required? And then the question that is a lesson in futility and despair, the question that always manages to creep into my thinking, even though I know better than to ask it because it’s a waste of time and only makes me feel the beginnings of panic – What if that point never comes?
Don’t go there – I tell myself the minute that question enters my mind. Do not go there.
So I won’t.
A friend of mine’s husband was just diagnosed with Alzheimers. “This story isn’t over yet,” she said to me the other night.
And neither is ours. Not by a long shot. Emma has her entire life ahead of her. An entire life of one day at a time, one step at a time. And that’s where there’s hope.
There is always hope.
For more on Emma’s journey through a childhood of autism, go to: www.Emma’s Hope Book.com
I don’t know you, don’t have a child dealing with Autism, haven’t been on the emotionally and financially draining ride that you and your family have been on. I have a couple of very close friends who have children with Autism, and read just about everything I can on the subject. And I follow your blog, as of recently. I want to tell you that I have an almost 14 year old son who I have to coach every single step of the way. I have four kids, this one in particular still needs to be told to brush his teeth…with toothpaste, twice a day. I still need to tell him to use shampoo on his head, to tie his shoes, to clean the speghetti sauce off of his face. He is a smart kid, a great athlete, “normal” in every sense of the word. But my point is, in some ways, what you are doing with Emma is “normal”. And with only two kids, you don’t have the large contrast to see that some of what you are dealing with is just plain normal. My son wanders off task constantly. I will tell him to take his dish to the sink, and then will find him, dish in hand, on the couch! He has lost his train of thought and wandered off task. I feel, to a lesser degree perhaps, the same frustrations. Just wanted to share the “normalcy” in this, hoping that you can find a glimmer of peace in knowing that some of this is just regular stuff.
Thanks so much for writing. My older son is neuro-typical, so I have a frame of reference of sorts, but it’s always nice hearing from others. I have tried my best to describe some of the things I must do with my daughter in detail so that others who may not live with such a child might gain a better understanding. Think of it this way – after reminding your son to wipe his face, he does nothing. Not only does he not respond to your request but he is incapable of taking the first step required – getting a cloth, napkin or paper towel with which to do so. You would then need to give him help with that by saying things like, Okay, go get a paper towel. And then when he still didn’t go to get one, you would need to physically show him – for the hundredth time where the paper towels are kept. Then wait to see if he can find them on his own. Wait to see if he can tear the towel off of the roll or simply grabs one end and pulls, pulling the entire roll apart, while watching it unfurl onto the floor with no response. You would then need to direct him to wipe his face. When he wasn’t able to, you would need to demonstrate by wiping your own. Perhaps in an exaggerated manner. Then you must wait to see if he understands. He might then use the towel to wipe his nose or some other part of his body, so you would then need to redirect him again, encouraging him to wipe the part of his face that was covered in spaghetti sauce. Meanwhile reminding yourself that this is an excellent time to go over the parts of the face, if he doesn’t know them. Having him wipe his face would not be accomplished with a casual reminder, it would require much much more than that. From both of you. Having your son wipe his face might take a full twenty minutes to accomplish if allowed to do on his own with your step by step guidance.
The point is, what you’ve stated, the kind of daily reminders we all find ourselves having to give neuro-typical children, adolescents and teens is vastly different than what I am attempting to describe. Reminding my neuro-typical son he needs to pick his clothes up off the floor for the millionth time is a very different thing than what I’m describing in supporting my daughter in washing her hair. Really appreciate your reaching out, Lynn. You are a good friend to take the time to read about something that doesn’t affect your own children.
The way I see it, hope and desperation are essential when it comes to treating a child with autism. Without one or the other, we’d be lost. Hope keeps our eyes on the prize and desperation reminds us just how badly we want it. To bridge the two together, however, there needs to be determination.
In a nutshell: hope lets us know where we want the child to be/progress to, determination is the enduring mental and physical strength we need to help the child get there, and desperation is what inspires us to think way outside of the box/do whatever it takes whenever we get off track or feel our hopes are drifting away.
Desperation may not seem worth the stress and anxiety it produces, but sometimes it’s the only way to incite new plans of action when all else fails. Reasonable measures (i.e. intervention plans and prescribed therapies) can often be fruitless from the start or lose their effectiveness over time, which will leave you desperate for answers. No matter how hopeful and determined you are, it’s how one manages his/her desperation that will determine the outcome. If desperation leads to electroshock therapy for your child, you have failed. Exemplified by Ariane, if desperation leads to finding the ideal literacy program for your child, you have succeeded.
Ariane, your ability to orchestrate all of your desperation, as well as your hope and determination, is what has kept me in admiration for the past 7 years.
Keep hoping. Stay determined. Delve into desperation. Hooray Emma.
Thank you Joe. For writing this, for hanging in there with us, for being strong when I haven’t felt so strong, and for adding determination to this post.