I've recently been asked how we've survived and dealt with the meltdowns over the years. I mentioned the Incredible 5 Point Scale as I usually do but then kind of struggled to remember more. What did we do? Where have all the meltdowns gone to anyway? How did that happen? Sure, they weren't that bad really, not as bad as others experience.... where they?
The fear of the mere thought of me losing the plot entirely sent me trawling through my memory-bank..... and my blog archives. The beauty of blogging, eh?
How could I ever forget the daily 2 hour crying/screaming sessions from birth when I pushed him in his buggy for long walks every time I could?
How could I forget the pre-diagnosis' terrible-twos that started at age 12 months and lasted for....well....a very long time?!
How could I have forgotten all the tears and tantrums over 'being first' at getting in and out of the car for EVERY journey and whenever I went a different route? How I always drove around 'til he fell asleep so that we could both recover from the exhaustion? How he always wanted to be first at everything. And I do mean everything, including going to the toilet. I won't even begin to recount how he tried to resolve that issue one day.
What about the disastrous summer of 2004 which included the major tantrum because we had forgotten a precious purple toy? That episode started with an ear-splitting, screaming drive down the M11, resulting in eventual abandonment of the planned outing, culminating with me getting 2 black eyes from a toy (NOT the favoured purple one, I might add) been flung at me and saw me in tears and sipping a brandy in the back garden at 3 in the afternoon.
How could I have forgotten all those incidents and many more besides and, of course, how terribly upsetting it is to see your child so upset and out of control with no way of getting himself out of it?
The truth is I haven't forgotten, nor will I ever forget. Not ever. These episodes are all filed away in my memory-bank, ever so slightly diminished by the passing of time and the faint, rose-tinted glasses that I may have been sporting recently. Let me take off those glasses for a while and try to share our experiences with you....
The first post of mine that I looked at (from 2009) I remember well, I had just forgotten how severe the episodes were becoming. We had just gone through a couple of awful episodes and I needed to act fast. I implemented the aforementioned Incredible 5 Point Scale by Kari Dunn Buron at very short notice and wrote my What Does Anger look Like? post. His artistic impression of what he thinks he looks like when angry still shocks me, even in it's simplicity, to this day and reinforces how upsetting these episodes must be for our children. This post still gets hits every day...probably more to do with the title than anything I've written! Nonetheless it's worth a read and I stand over everything I wrote in it. Following that post I also wrote Staying With The programme and Seeing The Bigger Picture expressing my fears over my son's future if we did not instill some self-regulation skills....pronto.This is also a post that I completely stand over and worth a read.
The relaxation book When My Autism Gets Too Big also by Kari Dunn Buron is also worth considering. Both books work on getting the child to acknowledge how they feel at various emotional stages, getting them to recognise and name those stages and eventually implementing a coping strategy. That's what I like about them. The first book in particular gives behavioural examples that are very helpful. It's my honest belief that the child must learn these life skills in order to survive in our society! It is very difficult for them but they must learn it, take responsibility for their actions/choices and implement their learned self-regulation skills.
Which brings us to the area of punishment, a point of major conflict! In this I believe in teaching the coping skills first and if the child chooses not to implement them only then does he/she get punished. I really don't see the point (and I have tried it!) of punishing a child for hitting out when he/she feels angry without also teaching them an alternative, more appropriate way to behave, for example. Of course hitting is not allowed and a punishment is warranted but I think it's far more effective if the child is taught how to deal with it first... in our case it's 'what do you do if someone hits you/makes you angry?'....... 'walk away or tell an adult' . If he didn't do either of those then there were consequences. Bear in mind it took 2 to 3 long years of constant reiteration for this strategy to become second nature so buckle down for the long haul and don't get discouraged ;-)
I can't recall precisely all the steps we've taken and I know as helpful as both the above-mentioned books are we didn't implement them entirely. But that's the beauty of them, you can adapt them to suit your child's circumstances. In fact that's what we did, we implemented bits of various programmes to get the desired results. For example we taught self-regulation skills as I've laid out here and motivated him by relying on
I also recall doing some role-playing under the guidance of our Behavioural Specialist (when we had one!) that was very helpful. We enacted a couple of scenarios with the 3 of us interchanging the roles. He seemed to learn from that. In conjucnction with this programme, that I just cannot recall the name of, he completed a Feelings Diary. Each week we worked on an emotion and each day he had to make some entries into his 'feelings Diary'.... e.g: I feel sad when... At the same time he filled in a reward card with stars for each entry in the feelings diary and at the end of the week (delayed gratification) he got a surprise! A gentle and very effective programme that is a great forerunner to the programmes I mention above. Pity I can't remember the title.
Now I do realise that meltdowns vary from child to child along the spectrum and triggers and solutions differ also. All I can do here is to share what I believe worked for us and give some pointers, such as:
* Determine the triggers and avoid them at first.
*Work through the 5 point scale bit by bit.
*As you do the above help your child determine the coping phrases that lets him/her know help is available. These phrases will replace anger/screaming/hitting. For example: I need help..... I need a break.... I need to leave the room... depending on where on the anger scale he is and whatever phrase your child has chosen.
*Initially regularly ask what number on the scale he/she feels at various stages during the day and acknowledge and name the emotion(s) for him/her. This will help to embed the strategies.
*Re-introduce the triggers gradually together with solutions and/or the learned coping.phrases. After all, if homework is a trigger it can't be avoided forever! Reduce the amount of homework too (or whatever activity is the trigger) so that a successful outcome is more likely, thereby increasing his self-esteem;-)
*Lavish praise, congratulate, hell...throw a party every time he/she implements ANY part, however minute, of the behavioural plan you're working from! They respond SO well to praise :-) Of course if they get through homework (or whatever the trigger is) without having to implement any strategy then you may call all the relatives round for a knees-up!! But NOT if that's a trigger!! Obviously....
* Adversely don't even attempt to force them to implement any part, however minute, of said plan if they're mid-meltdown. Totally pointless in my opinion, they're incapable of it so it's probably too much to ask of them. If you can't get in with a gentle reminder ( prompt them with learned phrase e.g: Do you need a break' encouraging him to repeat, then respond immediately) just before the red mist descends I've learned that it's better to ride the storm, remove them to a quiet place and when calm settles have a little chat. Ask them what they think they should have done instead of screaming/hitting etc. Once they say the agreed coping phrase then its hugs, cuddles and lavish praise...with a promise that they'll try harder next time;-) More flies with honey... and all that.
*Never, ever forget the power of a good
* Rewards can be immediate, incremental, long term or a mixture of all 3 depending on your child and how they are with delayed gratification. My child has learned to deal with this over the years and can wait quite a while for his treat/reward. He can even save his own pocket-money (tie that into your reward system if you can) and wait until he's able to purchase his desired object. Rewards don't have to be huge or even tangible. As I say in my reward posts above my son works for check marks which lead to a larger item.
*I have learned that the gentler, more structured punishment/consequences method works better. I have also learned to deal with the bad parenting guilty feelings that go hand in hand with that method. Mostly.
*Consider this..... If a child has issues with delayed gratification or has a card that allows them 'skip queues' as waiting is difficult for them then why would grounding them or taking away gaming privileges for a week, or even a day, help with their angry outbursts? Expect screams for the whole week......and, I reckon, huge self esteem deflation with that one!
Now might be a good time for any parents of NT children or behavioural specialists reading to press the 'next blog' button! Apologies if this goes against all your beliefs, this is what has worked for us...what more can I say?!
*If putting a child in time-out for a minute for each birthday is appropriate when younger then why can't banning all screen-time (for example) for a shorter period be acceptable punishment for a 9 year old? Not that time-out was EVER a successful method for us, a complete disaster more like. Children on the Autism spectrum are different and teaching them appropriate behaviours means tweaking the existing models, simple as that. In my opinion. I've withdrawn screen time on numerous occasions for a 30 minute period and it has been successful. That time can be increased as they learn to tolerate it. Basically the time away from a favoured activity should be tailored to the tolerance levels of the child... and perhaps just a tad higher so that he feels the effect ;-)
*It is perfectly ok, in my opinion, to avoid going places or doing things that really upset your child. I know that feels like giving in and the Bad Parenting guilty feelings will take hold. It's easy for others to give their well meaning advice but they have absolutley no idea of how things are in your house and your life. Trust your instincts and have total faith in the knowledge that you...yes, you... know your child best. In time your child will be able to cope with some things that he/she couldn't previously. I know I upset family members many times by missing meals out/visits etc but I gradually didn't care because I knew what was right for us. Now he goes anywhere, no problems. All in good time...
*Ensure that your child knows why they're being punished. The young ASD/Aspie kid won't get why no computer after dinner 'cos he/she pulled little Mary's hair at 10am that morning! An Immediate response is better, I believe.
*Implementing all of this needs your complete focus, so no making dinner, ironing clothes, facetweeting whilst this is going on! This I learned the hard way! That said though, it is good to retreat into the background a little, as progress is made, so they learn to do it themselves;-)
*Apart from any programmes we may put in place our children will mature just like their peers and with that comes some better behaviours. They also learn from their peers which is why supported inclusion in mainstream, where appropriate is so important.
*Every night as you put your darling child to bed, regardless of how the day has gone, snuggle them, tell them you love them as usual then choose one thing, just one thing that they did well that day....... praise them for that one thing and tell them how proud of them you are. This is the loveliest and most effective piece of advice I was ever given:-)
* After you have come downstairs, pat yourself on the back...... then pour yourself one very large glass of wine ;-) This is crucial to the success of the whole programme.
Mammys need praise and
Good luck with whatever programme you put in place.
This is is not an official recommendation, just simply one mother's account of what worked for us in our meltdown years. It is not an exhaustive list either, I'm sure -at least I hope- some of you have other suggestions to add also? Our son seems to have survived the worst of the meltdown years, although we can still have some mini ones! He knows what to do now and even apologises at times! We are now moving closer to the terrible teen years and second level education and all the additional issues that this will entail. I must not be too comfortable in my rose-tinted glasses and I must regain my focus to concentrate on the new challenges ahead.
If just one sentence, one phrase or even one word I've written here helps one person through their meltdown years then that makes me very happy. My goal will have been accomplished.
This post is written with a special friend in mind.... you know who you are. Stay strong, have hope.