The Mother of all Meltdowns

Anyone with a child on the Autism Spectrum will probably shudder when I mention the word 'meltdown.' I think in the early years of a child and parents life on the spectrum, they are one of the hardest things to understand, preempt and cope with.

Now, we are not talking about tantrums. Nothing infuriates me more than people mistaking a meltdown for a tantrum. I struggled for a long time to understand the difference myself until I read a book called, 'From Anxiety to Meltdown' by Deborah Lipsky. Identifying and learning how to manage meltdowns are the key to anyone understanding a child with Autism, and particularly understanding the child's unique experience of a meltdown because every child will have a unique set of triggers and responses (for example: my son has never been a 'runner' during a meltdown but he needs to hide under a blanket).

Simply put, tantrums have an end goal. More often than not a tantrum is about a child wanting something or wanting to do something that they cannot do. Trust me, the quickest way to find out whether your child is having a tantrum is to give them what they are asking for. Bingo. That will be the end to that. A meltdown on the other hand has no known goal and nothing to 'give in' to. I have experienced times when my son started in a tantrum and became so overwhelmed that he ended in a meltdown and giving in to him would have had no effect. The reason for this is that when a child is having a tantrum they have all their cognitive facilities at their disposal. They are generally aware of their surroundings and are controlling what is going on. On the opposite end of the spectrum, when a child spills into a meltdown they lose all cognitive awareness because it's the first part of the brain to shut down - and that means losing sense of safety and control (which is why often meltdowns lead to a child being hurt).

I also noticed that if my son was holding something in his hand during a tantrum that was precious to him, he would not attempt in any way to break it. He was fully in control. However, once he went into a meltdown he would throw whatever he had in his hand, regardless of how special it was to him. Oh we've had many tears over things he broke when he did not intend on breaking it. Or, as was almost always the case, he did not always remember what happened during a meltdown. This is a tell tale sign as his cognitive facilities had shut down and he would lose awareness of what was happening. Arguing with him about what he did was pointless, he simply did not remember what happened during a meltdown.

*Note: sometimes he would remember snippets. You'll find out a bit later in the blog that the only real thing he remembered was that he swore in front of me! Funny kid.

Now, this isn't a blog on tantrums and meltdowns but before reading this I did think it important to understand a little of the difference between the two. If you have a young child on the spectrum then I highly recommend you do some research and begin to understand the differences so you can be more equipped to preempt a meltdown or situations that may lead to it. And trust me, there is hope. I have a boy turning 12 this year and meltdowns are extremely rare, which, in years gone by I never ever thought would happen.

From almost birth until I would say around 10, my son would have a meltdown almost every day. His meltdowns were caused by too much sensory input often mixed with a high level of anxiety. His emotions and sensory regulation would tip the scales and inevitably he would end up in a meltdown. These meltdowns peaked between the ages of 5 and 8 and were daily. He would be perfectly behaved at school but the moment he got into my car he would start screaming and kicking my seat. So many times I went to his prep and grade one teachers and begged them to tell me what was going on at school but they continued telling me that nothing was happening. It wasn't until years later, after he was diagnosed, that his specialists told me that he had the ability to keep it together for the hours he was at school but would release his pent up sensory overload until he was in a safe place, and that was with me. I used to hate pick up time at school. I would sit in my car for half an hour bracing myself for the onslaught I knew was coming. I couldn't avoid it and I couldn't stop it. Sometimes it went for an hour and sometimes longer. I hated that part of the day, it exhausted the both of us and I was at a total loss as to how to help him. He would scream and kick and lash out until he used up all the energy he had and then more often than not fall asleep out of sheer exhaustion. Oh how I wish someone could have told me at the time what was going on. It was a time of feeling completely lost and helpless.

As Master 11 got older and moved into grade 2 and 3, he could no longer contain himself at school and meltdowns became a regular part of his school week. Grade 2 was an awful year and by far a year I never want to repeat. By grade 3 we had sought help and we were told he had Asperger Syndrome (as well as ADHD and Anxiety Disorder). The meltdowns continued but over the next few years we put a great deal of effort, with the help of specialists and teachers, in teaching him how to regulate his own emotions and sensory needs. I'm a firm believer that there is no point in simply 'managing' your child on the spectrum, you MUST give him/her the tools to manage it themselves. Because one day you want them to be independent and know how to live in the world with all the needs they have. We always set out to do this and although at times this was extremely difficult, we always encouraged our son to take responsibility for his actions and his needs, with very much our support and help. I became his 'teacher.' I had to teach him the things he could or couldn't do. When situations arose that he struggled to cope with I would explain why it was hard for him. I taught him everything he needed to know about himself, why he thought in certain ways and why he found noise and taste unbearable. And in teaching him he began to regulate what he needed to do in order to not find himself over stimulated or what he could do when anxiety over took him.

Anxiety is a whole new topic for me. I won't elaborate here due to time and space, but living with a child with diagnosed Anxiety Disorder has also been challenging. But in the same way as we did with Aspergers, we taught him all about how he felt, what irrational fears were, why he felt the way he did and what steps he could do to overcome it. This did not happen over night. I often say to people, 'my son did not become who he is by accident.' No, it has taken years and years of hard work and determination, on all our parts. How thankful I am for a school who has also been incredibly supportive and has had some teachers who just 'got' him and knew how to work with him. Not all have that ability, but I'm sure thankful for the ones who did.

Fast forward to present day. After years of tears and frustration (and that's just me), our beautiful boy rarely has a meltdown. He self regulates, knows when to withdraw, knows what he needs to do to overcome his anxiety and what he can do to cope with social situations. He still needs a little help (sometimes his teachers make him take a break!!) but largely he can monitor and make decisions for himself. I cannot tell you how good that feels to get to this place, particularly on the cusp of heading to high school. Mind you, after a meeting with the co-ordinator of the special needs kids of his high school, I'm really excited. Again, more on that next time.

In some ways this year I'd almost forgotten about the dreaded meltdowns, so infrequent they are now. Usually when he is close to one he'll go to his room and curl up under his doona until he calms down. That's when I know he's close but he rarely tips over into one. And I realized later that I'd almost forgotten about them. Something I never thought I'd say in this lifetime!!!

Except for two weeks ago when he had the mother of all meltdowns - and it lasted 24 hours!!!

He was playing soccer with some friends, as he usually does (although these days he also plays with his Pokemon cards) when he got into an altercation (nothing particularly new about that). Master 11 quite often gets into altercations about sport because usually someone changes the rules or doesn't follow them - something he very much cannot handle. A friend took the ball and refused to give it back and once he did Master 11 kicked it at him. Then, as far as he was concerned, it was over and he walked away.

Unfortunately what happened next was to lead our son into the mother of all meltdowns. His 'so called' friend grabbed him around the neck from behind and choked him.

Now, I don't know about you but if someone came at you from behind and put their arm around your neck and squeezed, you would fight for your life. Not only that, but we have always known that one of Master 11's greatest triggers to a meltdown is being held around the neck. Even if he thinks someone has him close to the neck, he comes out fighting. We have no idea why - it's just a trigger that we learnt early on when hubby would play with him. Any arm around the neck, no matter how gentle it was, and this kid would tip straight into a frenzied meltdown. And that's exactly what Master 11 did. His later recount told us of his fear because he became dizzy as he fought for breath. So Master 11 fought, for what he believed at the time, for his own life. And nobody could blame him for that. His so called friend fought too and what ensued was an incredible brawl.

(It's important for me to add here that Master 11 often 'perceives' events as being much bigger than what they are. This situation, although horrible, was not life threatening as he would have had anyone at the time believe. But that's how he felt and that was his experience. It is interesting that our 'perception' of events often does differ from the reality of the event. But in true Master 11 fashion, he completely catastrophized this situation so if you ever hear him talking about the time he nearly died - you can be assured it wasn't quite like that).

Once the brawl was broken up, Master 11 went to a place he could not come back from. His fear and his world became so overwhelming that he tipped into a huge meltdown. Thank goodness for a staff member who has a good rapport with him and was able to monitor him as he went up to the top of the school yard and kicked and yelled for easily a half an hour. It had become apparent that this was out of the ordinary for him and he wasn't calming down any time soon. It turned out that what made things worse was that when this fight had finished Master 11 used many expletives 'in front of' another teacher (not 'to' her - there is a difference) as he was by this stage completely overwhelmed. This teacher told him that he didn't deserve his 'house captains' badge and it should be taken from him. I understand that her comment was made out of complete ignorance as this is a staff member who has never had anything to do with him, though sadly has taught a child with Autism and learnt nothing from it. Still, that comment hurt me as much as it hurt my son. People's ignorance is always very hurtful.

This added fuel to his fire and he threw his house captains badge and continued his tirade for what seemed like forever. Thankfully he stayed away from the main school buildings and by the time I was called to be told what was happening, I could see that he'd gone so far that even I would not be able to bring him back. And even as I write this I feel emotional because I feel so much pain when I see my beloved son in a place where I can't touch him, I can't sooth him and I can't calm him. That hurts me more than anything in this life. I have a very strong bond with both my sons, on different levels, and I know I am Master 11's greatest security. And when I can't give it to him, my heart simply breaks and it takes me a long time to recover.

I stayed with him but I also knew that during a meltdown any other sensory input is unhelpful because all sensory facilities have been shut off. I couldn't talk to him or touch him because he was already in a sensory overload and from past experience, trying to do those things can result him him lashing out. Oh how I understand adults who get into difficult situations with police because they don't know this about sensory overloads. He used a few expletives in front of me, something he doesn't usually do and I didn't even try and stop him. Later, much later (like the next day later), he apologized to me but I had nothing to forgive. It's rare and he didn't mean it. Thankfully I know that. But it's nice that he was sorry.

After going for almost an hour it became apparent that Master 11 was not going to be able to calm down at school and the only option we had was to send him home. This is not done lightly as we do not often feel that sending children home resolves situations. But we felt that we had no option as Master 11 needed to find a safe place to go to in order to block out what was happening around him and find his calm. He was permitted to go home with the promise that he would come back the next day and talk to the vice principal so that he had a voice in what had happened. Thankfully hubby was home that day and was able to pick him up. He never even made it back down to the school, I let him out of the gate as far away from the buildings as possible.

I was an emotional wreck after that myself, and mad at the whole situation. But I knew that me lashing out or causing more issues was not going to help anyone. I also needed to calm down, find my own safe place and somehow launch back from there. Master 11 was finally safe, at home in his own bed where he stayed for the rest of the day and night. That's his safe place. I in turn somehow got through the day with the support of the staff who truly understand our son, until I was able to go home and get my head around the event.

Now, what many of you may or may not know about Aspergers is that often when an issue presents they become like a bull dog with lock jaw and won't let go!! Oh my goodness, I heard that scenario and days events played over and over and over like a broken record. And by the time we got back to school the next day, Master 11 was in no way near letting it go. In fact, in a very short period of time he was once again sitting outside in what I call a 'mood' because by hook or by crook, if this so called friend wasn't dealt with harshly then he wasn't going to let it go.

There comes a point where one can be understanding, patient even - but when halfway through the morning he is still sitting outside, mad as a hatter because he thinks this child should be suspended, I'd had enough. I reminded him that if he had been suspended every time he had an altercation like this one then he'd be home schooled!! But as many know, what is good for the goose is not necessarily good for the gander!! In other words, what is good for him is not necessary good for someone else. And he was simply not going to let go until this friend was hung, drawn and quartered. There are many times when Master 11 becomes judge, juror and executor all in one!!

When the 24 hours since the event had hit, I'd had enough and I told him so. We'd given him all the support he needed and the avenue to talk it out. The child had been dealt with and Master 11 had been given the opportunity to talk with him but couldn't bring himself to do it. Instead, he was given the option to 'write' down how he felt - which he did in the best ever written essay of his career to date. I told him later that if he keeps writing like that in high school he'll be an A+ student. Unfortunately it takes a high level of motivation for him to write like that. Nothing like an injustice to get the pen flowing.

After some stern words from me (gosh working at his school can take its toll on me too), I went about my business and ignored him. It was time to move on because 24 hours was enough for me too. I don't know how much longer he went but I'd certainly had enough. I'm involved in an Incredible Years program so I went to attend that. From there I didn't even want to know what was happening so went home at my usual time when I finish at the school lunch time.

I did receive a text later that day to say that he and his friend were over it and were now best buddies again. Seriously? Yes seriously. I discovered pretty early on that that is how boys operate. Punching on one minute and best friends the next. Girls on the other hand - oh my goodness!!! It frustrates me to no end because I was exhausted after that 24 hours, but hey, I just had to be happy it was over.

I am so very very very thankful that this is rare. And I hope it stays that way. I have had so many worries about high school next year - particularly after this event. Thankfully a lot of those fears have been dealt with after meetings with his next school, but by gee - I don't want to have to see this happen too many times. Actually, not at all. I'm not sure that this is our reality but I'd be pretty happy if we could limit this to only once a year. Because I tell you, that week I was beyond exhausted.

So that's it. The mother of all meltdowns. 24 hours after that you could almost think nothing had happened. Master 11 was back to his happy self and equilibrium had been restored. He was still happy to tell anyone about his near death experience, if you wanted to listen, but even that eventually became a distant memory - stored in the eternal memory storehouse for another time and another place.

Me, I'm not sure I pulled up as easily. But perhaps I'm not meant to. I'm his mother after all. He was the participant, I was the helpless spectator. I hurt for a little while longer and then I felt sad. But, true to my own nature, I took from it the positives (we did survive after all), learnt from it, realized how important it was also for me to forgive and let go (of people's ignorance) and keep on pushing and teaching my son how to deal with this beautiful and amazing life he has been given. I will forever be his teacher as he grows towards maturity and adulthood, hopefully finding his way in an unjust world that is so fast paced and often a sensory nightmare for him. Yes, we'll just keep getting up and we'll keep going.

Because really, there is no other option.