Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Monday, August 9, 2010

Instincts and Trust

It has now been over two years since Butterfly’s Nanna passed. It has been a time for healing, at least to some degree. As I said in one of my comments, it was difficult to write that last post. There is still some anger lodged deep inside me about some of the things that happened. Yes, I know it won’t help anything, but I think it’s inevitable that we feel anger when someone we love is made to suffer unnecessarily because someone else is selfish or is bad at what they do. (Yes, I made a formal complaint to the hospital. No, to my knowledge, it didn’t do any good.) When we trust someone in any field of expertize to help us, we shouldn't have to second guess them.

My focus though has been on my child, so before I bring her story up to present day, I want to talk about some of the challenges that come with ADHD, Asperger’s Syndrome, food intolerances, and learning difficulties. I share some of the things I have learned in case there is something that will help other parents of challenged kids. At the same time, I recognize that no two kids are exactly alike, and I think the first thing that has to said, that the allergist I met early on told me, trust your own instincts.

You don’t have to have a special needs kid to sometimes be overwhelmed by well-meaning people offering advice. For me, there were people from the get-go who variously told me what to do, often in contradictory terms, or bragged about the progress of the babies in their families (with rather impossible claims, by the way), pushed me to get solid food into my child before her system was ready for it, pushed me to get this thing and that thing that was supposed to help with her development, etc. All I can say is that there were times when the claims and the pushing made me feel depressed, but there was no time when I felt compelled to push my child, or pay money for things designed to make my child walk, or do anything, before she was ready, or in any way make her “perform” to satisfy the opinions and competitiveness of others. I took the words of the allergist to heart and trusted my own instincts. And I have often been glad of it.

Sensory Overload
It can be difficult to explain to people what it’s like to raise a child like Butterfly, and all the little things that can impact on their senses and therefore on their behaviour. When we first moved to this little house, Hubby decided to build a play house for Butterfly. He put cedar shakes on it for the roof and sort of a board and batten siding. The framing and finishing of this wee house required a lot of hammering ~ something that didn’t go down well with Butterfly and her sensitive hearing. Hubby’s hammer suddenly disappeared. It just mysteriously wasn’t where he’d left it and no amount of searching in the area came up with it. He had to get another hammer.

A couple of weeks later, I was cleaning in our bedroom when I saw a little bundle of socks shoved into the space between a little chest I had in our closet, and the closet wall. I reached down and picked them up, wondering what the heck they were doing stuffed in there like that. And there... underneath the socks and hidden between chest and wall, was Hubby’s missing hammer. Yes, picture eyebrows raised. It seemed so ironic that Butterfly had taken his hammer and hidden it, when he was building that little play house for her. But when I held out the hammer with a questioning look, she just said, “it was too much noise, Mom. I don’t like hammering.”

Well yeah, sometimes we don’t have to go into town, into exuberant crowds, or into noisy stores to get that sensory overload thing goin’ on. Right here, with the radio playing rock music, Hubby hammering behind the house, the washer going, Hubby hollering at me to ask if there are any more nails, a dog barking down the road , and the lady across the street hollering for her grandkids, it can be something of a sensory overload for all of us right here. Not really all that surprising then that the child temporarily halted construction of her play house.

You can stare at us all you want and shake your little head about my misbehaving child, because all you can imagine is that she is an undisciplined brat. But you just don't have much of an imagination and you're wrong. I discipline my child when she is being bad and needs to learn a lesson. I do this when she is capable of grasping the lesson. But I do not discipline her when she is in reaction. Why? Because, as I’ve mentioned before, that would be roughly like punishing a child for having the flu and expecting that to make them well. There were times I had to smack her bottom to get her attention. But this wasn't really a punishment as much as a "hey... snap out of it." It sometimes worked. It saved her from serious injury a couple of times. But it was never done out of anger, only out of fear... fear for her safety mostly.

Other times, during tantrums for instance, I would ask her, "just what is it you're so angry about?" If it was a full blown meltdown, it was like talking to a brick. But if she was just mad about something and not handling it well (as is usual with Aspies), she would pause in her ire and think about it for long enough that I could also ask, "how can we fix it, whatever it is?" It was difficult for her to express herself, and I often didn't understand what she was trying to say, but if I hung with it and kept giving her my attention, we could sometimes get to where we could talk about it and find solutions. One thing I used to say, and that I’m sure she got tired of hearing it, was, “for every problem there’s a solution. Let’s try to find one.” I kept saying it because it takes a lot of repetition for an idea like this to sink into a mind that doesn’t do “calm” and doesn’t do “think first” and doesn’t know a good, healthy way to express emotion. Repetition helped to instill calm; helped to instill in Butterfly the knowledge that I am here and I will give her my attention when she needs it. It eventually gave us shortcuts to dealing with problems.

When she was around 7 and 8, she used to routinely run into the woods behind our house. At first I would follow her, worried that she might run all the way to the road, and in her emotional state might wind up getting hit by a car or something. But then I realized she was only wanting attention. Running away was just a way to get it. She would only go so far, then turn and look to see if I was following. I would see her pale face and dark eyes peering at me through the trees. She would only keep going if I went after her, so I didn’t. Instead, I waved and hollered out, “come back when you’re ready to talk.” Then I returned to the house. There was no reason for her to run if no one was chasing her. She waited for a bit, but no hyperactive child is going to stand around in the buggy woods for long, so after a bit, there she’d be on the deck. Getting her back into the house really didn’t work too well, so I’d go out, sit on the steps, and invite her to sit beside me. It took some coaxing, especially if she was in a temper, but eventually we’d sit side by side and talk about what she was upset about. Always I had to be calm. Even if something had happened that rocked me a bit, or really ticked me off, or upset me in any way, it would only upset Butterfly more if I showed it. The only thing that allowed communication to occur was calmness. Anything less wouldn’t do. It was simple: I had to control my own emotions before I could help her deal with hers.

Even today, if I get impatient with the fact that it sometimes takes her an hour and a half just to get ready to go out with me, and I start rushing her, it causes her so much stress that she winds up screaming at me. As much as I may want to push to hurry her up, there just isn’t much point. If I threaten to leave without her, she isn’t going to go faster, she’s only going to get mad. Of course, at this point, sometimes I still do, but I’m just not mollycoddling her anymore. I think it’s time she realized that I get frustrated too. Before she goes out into the world, she’s going to have to get used to the fact that she’s not the only one using it. The whole world does not have to acquiesce to her oddness and her needs, and indeed, it won't.

The thing is though, I back off before she gets too upset. I can only hope her friends, neighbours, bosses, etc., will know to do the same. Yes, I can envision some lost friends and lost jobs in her future. But I don’t think I can prevent that. I can only hope she learns from those occurrences. The world will not be easy for her to fathom, but as far as I know, it’s the only one we have. By now she knows there are a lot of uninformed people wandering around out there who will judge her without knowing her or knowing anything about Asperger’s, or even knowing anything about much at all. This is the state of our world. It's an information highway with some people whizzing by without noticing anything but money, and yet others wandering aimlessly on the shoulder of the road with no direction. Adjustments to reality can never be one-sided. She will have to walk as softly as she can, and carry her own verbal version of the proverbial big stick to get by without either being run over, or held up by others.

I only hope I've prepared her for the world we live in.


  1. *applause!*

    Well said!!! Top to bottom!

    The phrase in my house is, "Let's be problem solvers..."

  2. This is a great overview. I say the same thing to Audrey when she is angry or about to tantrum, "What are you mad about?" and I've wondered if that is a good thing to do. It's difficult for her to identify her emotions and triggers so I wonder if it just pisses her off more. I'm going for the type of approach that you describe, but maybe she doesn't have the communication skills for it yet.

  3. @ChickiePea: Thank you! We can never stop trying, eh? :)

    @Lynn: Thanks. I hope it's helpful. I think it's important to start building those bridges when they're still little. As long as you recognize her triggers and/or the warning signs, and use the same phrases to try to intercept the meltdown, then those words become familiar for her, and eventually their meaning will as well. When that happens, it will all start to gel and you'll have something. They're a work in progress, these kids. ;o)