|Here – have a lolli.|
I don’t normally use this blog as a place to discuss autism, or our experiences with it, as this blog is a way to escape from the more difficult aspects of parenting.. autism included.. It’s my happy place. I don’t want it to be a place of controversy. It’s what makes me feel positive, even if I don’t start out that way. However, over the past few weeks, I’ve been given a lot to think about, whether that is through articles I’ve read, or people I care about being subjected to ignorance, to the point that I’m kind of feeling it invade my happy place. I feel the need to voice my feelings on this. In this particular case, writing it all out and how I feel about it I guess IS a way to escape the reality of it. I ask that you bear with me. We’ll be back to crafting and decorating before you know it.
As I’ve mentioned, my son, Ayden, has autism. He was diagnosed when he was 3-years old, but we began the journey to diagnosis when he was about 14-months old. Some day maybe I’ll tell that story, but for now, just know, that before I had Ayden, before his diagnosis – honestly, probably even shortly after his diagnosis – I had no understanding of special needs of any kind. In many ways, I still don’t for anything outside of my own situation. I’m no expert on anything save for my own family. Most days, even that is debatable! But, before Ayden, I had no real compassion for the difficulties of both being, and living, with a special needs person, and I had no idea of the massive and significant rewards of caring for a child with special needs and the joy in it’s simplest and purest form, that would come to my life. I was an ignorant person – blissfully. Most of us are oblivious to what may be happening to our neighbor, our friend, or even our family members.. and most of us are even more likely to feel most comfortable to remain oblivious because we don’t know how to help.. or even if help is or isn’t needed. Or, maybe we just don’t have time to care – it’s not close enough to us to do so. I have no illusions.. this is what makes the world go around. In my house though, it’s as close as it can be. Ayden, and his having autism, and many of my friends and their little ones that I’ve become close to through this, that all have their own unique brand of autism, have taught me some very valuable lessons – lessons that I so wish I had taken the time to understand before. Most of all, and so importantly, I’ve learned tolerance. It’s a lesson that applies to so many things that we human beings encounter, and I’m so glad I get it now.
So.. after that brief little excursion down memory lane and an insight in to my true psyche, let’s talk about what has got such a bee in my bonnet, shall we? I recently came across an article on Blogher written by a woman who had encountered a rather rude and ignorant woman in a doctor’s office who was voicing her “opinion” about those “autisms” and how they don’t belong in a classroom with “normal” kids. I may add that this obviously brilliant woman, was voicing her opinion to the writer, who had opened the conversation with a statement that her child had autism. It doesn’t even matter how you feel about integration of special needs kids in a classroom, there was no way anything this woman said would not be taken without offense. She sounds a bit like that character on SNL.. the girl you wish you hadn’t started a conversation with at a party, only, she’s not funny. Then, a day or so ago, a friend and her son were approached by not one, but TWO women while grocery shopping, both expressing their displeasure over being disrupted by her son having a meltdown. Granted, it was a loud one, but none the less, after having the situation explained to them, there was not one between them with an ounce of compassion. There were many words of useless advice, and many, many words of judgement.. but no support or compassion. Just.. serious judgement.
Despite these negative experiences, the majority of people we personally interact with are very pleasant, and I would even venture to say more so. I am often encouraged by strangers, as is Ayden. Ayden is more often than not a pretty easy-going kid. However, he does, like any kid, have his days where I’d like to string him up by his toes. He’s very, very impulsive, which honestly often works against him.. and me. But still, most people are pleasant, and I therefore have to assume that in both cases above, the mother was approached in the spirit of goodwill. I have to assume that the comments made were in the spirit of helpfulness – no matter how ridiculous that sounds. Making these assumptions gives me hope for my son’s future. In the same spirit, and given that it is the holiday season, where malls and stores are packed and full of cranky children and parents, I thought it might help to lay it all out there as to what would be an appreciated interaction should you encounter me and my sometimes, loud, strong-willed child and are one of the not-so-pleasant variety.
Let’s pretend we are in a store, and you’ve just come across my adorable son, screaming his head off, in the throes of a meltdown – let’s pretend the meltdown started because he wanted to go back to the toy department for the fifth time and we need to walk back over to go pick up our prescription that we turned in 30 minutes ago on the other side of the store. Let’s pretend my son is screaming blue murder and throwing his 65 lb body in to a heap on the floor. Let’s pretend I already know I will still have to wait for the prescription that is being filled, as no one has called us yet, and I therefore can’t leave the store. Let’s also pretend that the pharmacy department is a good mile away on the complete other side and corner of the store from where I am. Let’s say I’m sweaty and frustrated. And, let’s say it’s getting more than a little annoying for you to listen to my kid scream his head off and watch me wrestle with him to keep him from high-tailing it, probably over you, at mach five, back to the Lego. What do you do when your ears begin to bleed?
First off, let’s talk about the difference between a tantrum – which is what most people think is going on – and a meltdown.
Simply put, according to Sarah Wilson, tantrums are cries for attention, which can be redirected into more positive ways of communicating. Meltdowns are reactions to sensory overloads, which can sometimes be circumvented ahead of time, but are nearly impossible to stop once fully underway.”
What is sensory overload? Well, sensory overload is what occurs when the brain and nervous system are bombarded with too much sensory input from one or more sensory systems and is unable to process and sort out the incoming sensory messages. A perfect example is given at Asensorylife.com. I paraphrase – Let’s pretend we are in a nightclub. After an hour or two of sensory overload, we have to get out. The pounding beat starts to irritate and we’re getting dizzy from the flashing strobes, the mix of smells overpowering our nasal passages. Getting out in to the fresh air and away from the noise eliminates the negative feelings and negates most of the overwhelm that we’ve been feeling. There in lies the issue – An autistic child wakes up in that nightclub every morning and can’t get out. Sensory overload is on them 24/7. All their behaviors are attempts to escape a world gone mad with sound and fury. The behaviors you’re seeing: panic attacks, explosive anger, repetitive movements, repeated words are all attempts to make sense of a chaotic world and gain self-control. A child with autism is desperately trying to get into control and live in a calm, ordered environment, just as we all are. A store is one of the most overwhelming places for a person living with autism, even if they enjoy the excursions. That includes any kind of store. Including the kind that sells food – it’s not always possible to food shop without your child. It’s also not feasible to think that a child can completely avoid their triggers – it’s more feasible to learn to manage those triggers – aka: visit the store and become desensitized to it, hence the reason us parents keep bringing our “autism” kids to the store to let them have meltdowns – hopefully, doing so will make it easier for them.. and you.. and us.
With that out of the way, as the parent who is sweaty, nasty, and near insanity during the meltdown and in the thick of it, here is what I would prefer for you to do:
1. Please, don’t judge me. I’m doing my very, very 150% best.
2. Just nod politely.
3. If you have to say something, consider if what you are going to say is actually nice. If it’s not, see 2 above.
4. Don’t assume that you “know” my child. My child has autism, but he also has his own preferences, his own behaviors, and his own reactions.
5. Assume that I’m a good parent having a very bad day, and that I have a great child, autism or no, who is having the same. Is there even such a thing as a bad child anyway? Challenging, maybe, but bad?
6. Compare my child to no one other than himself, and since you do not know him, please, refrain from comparing him at all. Now is not the time to get to know him. Don’t compare my situation with others that you may know of that have autism – it may or may not be the same. See number 4.
7. Offer to help. I promise you I will graciously decline the offer, but I will probably start crying out of gratitude. It’s true, I do it all the time lately – the lady at the gym that goes the extra mile to make my son feel comfortable, the person at the checkout who joins in conversation with my son’s stimming, the man who let’s my son come in to his house to see his fish tank while we’re trick-or-treating.. all of these simple acts of kindness make me blubber like an idiot. I may then ask for your phone number and bake you cookies. Then I’ll eat them before they get to you.. and well, that’s just what I do these days. But still, offer. That might be just what I need to improve the situation. Your offer of help.. not the cookies.
8. Understand that however uncomfortable you are, I’m probably twice as much and my son, thrice. I get that I should be, given that it’s my life, but understand that I’m doing everything I can to diffuse the situation as quickly as possible. This may or may not be in a way that you did with your own children – hell, it’s probably not even in the way I did with the rest of my children.. I have five you know.. or maybe even in a way that you’d agree with.. but it is in a way that I’ve come to learn works.
What I would prefer you not do:
1. Don’t tell me I need to control my child. Since I’m currently starring in wrestle mania and I’m about to be pinned, I’m clearly attempting to do that already. If you stick around, you might even see a pile drive from off the ropes.
2. Don’t ignore me when I explain that I’m very sorry – which I do about 9000 times a day already just for being in the same store as you are – but that my son has autism and some of his behaviors are just impulses that he can not control. It would be great if you also didn’t ignore that we’re working on them.. because we are. Every day.
3. Don’t tell me that you know others with autism that do not act like he is currently acting. Unless you live with these people, you don’t have a freakin’ idea what you are talking about – and by the way, you are incorrect. They quite possibly do when faced with being in a situation that makes them extremely uncomfortable. See number 4 above.
4. Don’t tell me I need to at least talk to my child. My child is 6 and in many ways, mentally, he is 6. But, when he is having a meltdown, he is 2. Maybe 2.5. Talking is a waste of time when you are dealing with a 2-year old. Further – don’t you think I’ve already done that?
5. Don’t tell me how uncomfortable my child is making you – I already know. Which is why I’m popping your Xanax. Please, give it to me. Kidding.
Truly, it’s not rocket science. It isn’t necessary to understand why he’s having a meltdown. It isn’t necessary to understand “autism”. It’s just necessary to be a compassionate, tolerant and understanding person. For those of you that are – which is most that we are lucky to encounter most every day, Thank you from the bottom of my heart – you are angels on earth and I appreciate you more than you’ll ever know. You, are the example I want my son to see to make him feel it’s worthwhile to participate in a world other than his own. I’m making you cookies – unfortunately, I’m eating most of them before they get to you.. but just know that I’m making them. And, I wish you the Merriest and Happiest Christmas, Kwanzaa, Hanukkah or whatever else you may celebrate. Thank you. And, thank you again.
For those of you that aren’t – It doesn’t get much simpler than this: First, if you’re in a store, during the busiest shopping season of the year, there is always going to be at least one screaming child. Always. Expect it. Further if the child you see screaming and acting like a toddler is NOT a toddler, it’s quite possible that child has autism or some other neurological disorder. If that child has autism or another neurological disorder, his mother, father, or whoever he/she is with, is already on high alert trying to diffuse the situation as quickly and swiftly as possible – your request for us to do something is only escalating an already tense situation. These parents may or may not have taken their Xanax that morning. They also probably can’t leave if they are still sticking around, and they are probably suffering from extremely high anxiety already – I mentioned the lack of Xanax, right? – your opening your mouth is NOT helpful. Do you really want to pull on that string? Really? How do you know they aren’t a postal worker and haven’t reached their letter carrying limit? Don’t count on the fact that I’m only 5’3″ saving you – if I can pin a screaming, writhing, melting-down, 65 lb child and bring him down before he makes it to the lego aisle, I can totally take on you! (Sorry, postal workers.. ) Seriously, a polite smile and a word of encouragement is helpful. If you can’t provide that and only that.. I would suggest taking said Xanax and doing your shopping online, as the stores are full of screaming kids this time of year. Oh, and have a nice day. Don’t expect a nice Christmas gift from Santa because you are totally getting coal, but by all means, have a nice day.
And, in the infamous words of Forest Gump, that, is all I have to say about that. Except that I don’t really take Xanax.. you can keep yours. Now, where are the damn chocolates?