I'm Doing the Best I Know How - Aidan's story

I posted this on my Facebook page back a couple years ago, but I don't think I ever posted it here. Here's the story of Aidan's autism:

In August 2008, my son Aidan was diagnosed with a disability known as autism. Officially he has what is called PDD-NOS or Pervasive Developmental Disorder Not Otherwise Specified, which means he has atypical autism. He hadn't even turned five years old yet. In some ways it was a relief - it was good to finally know why my beautiful, smart, smiley, talkative, almost potty trained little boy had suddenly stopped talking, potty training, and began having regular meltdowns with little or no warning or reason. I faced a lot of that horror by myself - my husband at the time was away with the military, and then we moved to Texas and he was busy otherwise. I had no idea what I had lost my baby to - they said he had good hearing so it wasn't that, but no good reason could be given for his regression. Finally, a year after leaving my husband and moving back to Alabama, Aidan's pediatrician referred him to the TRIAD clinic at Vanderbilt University, which specializes in diagnosing, researching, and assisting with helping to recover from autism. Dr. Warren spent 4 hours with Aidan, playing with him and talking to him, all part of a battery of tests that helped him finally determine what we had feared - Aidan was autistic.

When someone gives you news like that, even when you have your family there with you, it's completely overwhelming. Like getting caught in an undertow. And there is so much information they give you about what autism is and why it might have happened and how you can maybe reverse some of the symptoms. You start trying to get in touch with all these people to get help for your child, and in so many cases they don't help or can't help or won't help. I struggled with the schools and got turned down by the Social Security Administration and wondered why speech therapy and occupational therapy and behavioral therapy weren't covered by insurance. I began investigating whether I should start refusing to allow my son to be vaccinated, whether I should change his diet to one without gluten or casein or sugar or strawberries or blueberries...

And no matter how much you explain to people that your child is autistic, and what that means, they really don't seem to get it. When he has a meltdown in the middle of the floor because you told him no, people just assume you have spoiled your child and are letting him manipulate you. What they don't realize is that the reason your child is so out of control is because on top of being in an environment where every sound, every light, every touch is more than he can handle, you've just changed something on him without properly setting an expectation and his brain, the way it works (or doesn't work) can't handle it. He literally can't maintain control of his own behavior. And it isn't always easy to know what will trigger him, because even though he's five years old, he doesn't talk well enough to tell me what's going through his little head or that he's feeling completely overwhelmed.

When you choose to quit your job to stay home with your little boy because you feel that's the best way for him to continue making progress, it's a bit of a slap in the face when people look askance at your choice. I'm doing what I know is best for my son. I can't afford to pay a professional to give him speech and behavioral therapy, and once a week or an hour every other night before bedtime won't do him a bit of good. I don't know what I'm doing of course, so I have to research and learn to be a speech therapist and teach my child how to read faces and non-verbal social cues. I have no idea if changing what he eats will help him, or if it's a good idea to possibly make him vulnerable to deadly diseases in order to prevent him any further regression from a vaccination.

It's SOOO frustrating to try to help your child when even DOCTORS haven't a clue what causes autism, what triggers it, how to treat it or whether a child can ever totally recover from it. I'm trying to be brave and take it one day at a time. And I literally have people who will tell me that I am a bad mother because my child sometimes talks back or throws fits or doesn't eat the healthiest food. They don't understand that an autistic child doesn't always understand that when he echoes a phrase he's heard another child use or when he uses the tone he's heard an adult take with another adult that it is socially unacceptable. They don't get that I don't LET my child throw fits, I just can't always stop one once it's in motion. They don't see that there are days when if I want my child to eat anything, I let him eat whatever he's willing to put into his body and hope that I can balance it out with something else later in the day or week.

And yes, sometimes I need a break from Aidan. And yes, sometimes I am angry that my child is autistic. And yes, some days I question my decision to have a child (which wasn't planned, but every woman has alternatives when she finds herself pregnant). But know this and NEVER question it: I love my little boy with ALL my heart. I would not give him away. He is an amazing little boy who has worked VERY hard to recover from his disability and has made such great progress. He is so smart and wants so bad to make those around him happy. He has bad days, but he also has very good days which more and more often outnumber the bad days.

Thanks to all of you who have supported me as I raise Aidan and we defeat autism together. Especially Jeremy and my mom who have provided so much help and love that I am forever in their debt.

For more information about autism go to www.autism-society.org

I selected this post to be featured on my blog’s page at Autism Blogs.

Meltdowns 101

A lot of people outside the autism community seem to be confused or misinformed or uninformed about meltdowns in autistic children (and adults for that matter). I know that when Aidan has a meltdown, I make myself stop and say “Okay, is this a meltdown or just a tantrum?” It's usually pretty easy to tell the difference. Sometimes a meltdown will start as a tantrum but devolve into a meltdown, usually because Aidan's communication skills aren't enough and he gets frustrated, or because whatever caused the tantrum was just a trigger for a meltdown (like the straw that broke the camel's back – more about this later). A meltdown can happen for any number of reasons, and it's often difficult to tell what that reason is – I try to go back after an unexpected meltdown (it's not possible to do so DURING) and figure out what triggered it. If and when possible I'll try to defuse the situation before the meltdown happens, but this isn't always possible. Just like the bombs on television always have digital clocks on them, all autistic kids have bright, easy to see, obvious warning signs, right? Wrong. Sometimes I can see it coming, but unfortunately it's usually too late by the time I do.

What does a meltdown look like?

For Aidan, a meltdown may start with a very aggravated look on his face, widened eyes, clenched teeth, and balled up fists. He'll often growl at me or grunt, and usually at this point is beyond speaking to me, especially not to tell me what's wrong. This then progresses beyond aggression into violence – at this point if I look at his eyes, it's almost like Aidan's not in there at all, he's been taken over by this crazy little rabid animal for the time being. He begins screaming at me and then attacks me. I can try to walk away or place him in his room to do his thing by himself, but inevitably Aidan will pursue me. He will punch me, scratch or claw me, kick me, throw whatever is available at me, headbutt me, and attempt to bite me. His whole body is completely tensed up, his back frequently arched. He's chipped my teeth, broken Jeremy's glasses, damaged his own toys, thrown furniture, and always leaves claw marks and bruises all over me. It can last anywhere from 5 minutes up to an hour (we've never seen one longer than that, thank goodness, although he has had multiple meltdowns in one day). A meltdown doesn't stop as suddenly as it starts. Eventually Aidan slowly calms down, stops hitting me or trying to hurt me, moves from screaming and growling into crying and sobbing, and his body relaxes. He'll hide his eyes at this point, a lot of times he'll cover his ears, and sometimes he'll let me rub his back but usually he doesn't want anyone to touch him. If I try to talk to him about it, it's going to either make him cry harder or ramp the meltdown back up. He's usually very very tired after a meltdown and doesn't talk much at all.

What causes a meltdown?

Often a meltdown seems like a mystery. There are any number of triggers for a meltdown, and what may seem to be the cause of a meltdown this time, might not so much as phase Aidan next time. Or something that never bothered Aidan before suddenly sets him off unexpectedly. This is a pretty good sign that what set him off was a trigger but not the cause. Think of it like the old metaphor of the straw that broke the camel's back; a combination of sensory overload, physical discomfort, frustrations, disappointments, or surprises comes together to confuse Aidan's brain and he doesn't have the vocabulary or self-control to handle it calmly or at least ask for help to fix the situation. Sensory overload for Aidan is usually sound related, although it can be lights or any number of other sensory input – think of it kind of like how a strobe light can cause a seizure. Physical discomfort we've discovered after the fact has been from toothaches, tummy aches, sore throats, and even from being given milk at school (his tummy is very sensitive to milk products). Frustrations could be caused by a game not working for him or a friend not doing what he wanted or expected. Also, Aidan has a very strong sense of “justice” which isn't always logical, but if you punish him for something that he feels was not wrong or that he wasn't told there was a rule against, he will go into a tail spin.

Can't this just be “disciplined” out of him?

If Aidan is just throwing a tantrum, or if he's winding up toward a meltdown but still has some control over his behavior, then yes, discipline or even distractions can help the situation. But if Aidan loses control over and unmet need or discomfort, and I punish him instead of figuring out what his problem is, then I'm only going to make Aidan even more out of control. Basically I'm punishing him for trying to communicate that something is wrong in the only way he knows how at the moment. Some days his verbal skills are worse than others. Especially if Aidan is fighting off being sick, his ability to tell me something wrong can be diminished by various factors, and if I try to punish him into acting the way I want him to, I'm just going to make things worse.

So what do I do now that I know?

For a long time I had no idea whether Aidan was having a tantrum or a meltdown. I would try to punish him and only make things worse. Without the experience I have now with Aidan, I wouldn't know what to do in the event of a meltdown. Now, if I judge that Aidan isn't throwing a tantrum but has completely left the building when it comes to his ability to control his behaviors, then my only option is to make sure he's in a safe place (out of reach of things that can get broken or could hurt him), and try to restrain him enough to keep him from hurting himself or me. It's exhausting for everyone involved, and god forbid it happens in public. I think the hardest thing to explain to people without experience in the world of autism, is that aggression and meltdowns and the behaviors associated with them, are not signs of a spoiled or bratty child, or of bad parenting – they are simply symptoms of a disorder.

I invite your questions, comments, and suggestions (so long as they are constructive and in the spirit of learning and cooperation).