For Shelley and anyone else who may need it…….
I got an email the other day from a mom whose 5 year old has just been diagnosed with Autism Spectrum Disorder otherwise known as Aspergers. I know that first feeling all too well as Kai was the same age when he got his diagnosis except I had the luxury of knowing absolutely nothing about Aspergers and in some ways, ignorance was bliss. These days there’s a lot more awareness about it even amongst those who don’t know someone with it so I can imagine those first horrifying thoughts of what might lie ahead.
And whilst I can only speak for myself, and the people I know who have kids with the “disorder” (a word I prefer to NOT use), I want to assure you, it is not as bad as you might think. Yes the road will be rough, but not as tough as someone whose child is given a diagnosis of something like leukemia. Aspergers will not kill your child and I have learnt to find the blessings wherever they might be.
The mom reached out to me cause I have written previously about the meltdowns my son has had over the years with his Aspergers and she was hoping to get some advice from me on how to manage the meltdowns to minimize collateral damage.
So here it is:
1. The most important piece of advice I can give anyone is prevention is better than cure. Knowing what causes meltdowns will help you head them off. For example, going to new places and doing new things always brought on meltdowns. Welcome to the internet! Watching videos, researching, google mapping, printouts, forums, photos all help (we still do it every single holiday we go on – checking out as many photos of the place that we can).
2. Test runs. Watching new sports, sitting in on new classes, meeting teachers before they go up a grade all help them acclimatize to the changes they must inevitably make. Yes Spergy kids don’t like to do new things but the reality is their world will continue to change no matter how safe you make it for them so teaching them to adapt is the greatest tool for success you can give them.
3. Buy in bulk. If your kid is like mine, you will have clothing issues of some sort; we have had lumpy sock, scratchy pants, soccer shirts only (for 2 years straight) and an obsession with shoes that could probably only be rivaled by Imelda Marcos and Paris Hilton. Steve Jobs typifies the perfect solution: he wore the same jeans, polo neck and shoes every day of the week. So why wasn’t he known for wearing smelly clothes? He had a wardrobe full of the clothes he felt most comfortable in. Fifty pairs of the same jeans, shirts and shoes meant he never had to stress about what he was going to wear. Smart man, huh?
4. Warning. I do countdowns of all sorts – from a calendar he can mark off until it is time to go back to school, to one hour warnings till we leave, to five minute warnings and a ten minute buffer that I always keep up my sleeve in case something goes wrong. Hurrying a Spergy kid will never ever make them move faster. You must take a breath and be strong but gentle with them.
5. Lists. Giving them a visual plan to follow helps take away the stress they can feel when under pressure. My son Kai has a checklist on the fridge which at 12 years of age, he must still visually tick off before walking out the door including having to make sure he has brushed his teeth, washed his face and combed his hair.
6. Structure. This can work against you when things change (I’ll deal with that in a minute) but generally, having a plan to get you through most days will help lessen the day to day meltdowns. We have a clear and structured afternoon with a built in window of time where “anything can happen” which allows for things to crop up. For example, come home, have a snack, have 15 mins play, homework for 30 mins, walk the dog, +30 mins homework, 1 hour FREE time (this is where you have the freedom to slot in whatever you want), dinner, reading, shower, quiet time, bed, sleep.
7. When things change they can have a meltdown but will usually eventually get through it and actually end up having a great time/positive experience. When that happens take the time to sit down and talk to them about it. Remind them how “stuck” they were on doing the same thing but how awesome the new experience was. Tell them how proud you are of them. Reward them. Then explain to them there will be other times in their life where this will happen again and for them to remember that it will turn out ok again, but sometimes, even though they might be afraid, they must try to learn to trust you. The more often you have those conversations the stronger the foundation you will lay, enabling them to eventually deal with change effectively and successfully.
8. Communicate. Don’t spring things on them. Give them plenty of notice, plenty of information, lots of love, support and encouragement.
9. Don’t get angry. Look, I’ll be honest: this one is hard to do because we are human, often tired and sometimes embarrassed (meltdowns don’t always happen in the privacy of your own home) and more than likely you are giving yourself a hard time because you are not coping as well as you should or could. First of all forgive yourself of the frailty of being human. Then just take a breath, walk away if you have to, remember that they are not being naughty they are actually crying out for your help. They are in a dark, scary, lonely place and they can’t find their way out. When you think of it that way it becomes easier to be there to lead them out.
10. Coping. Sometimes Spergy kids like to have something that helps them cope when things get too much for them. My son had a squeezie ball that he used at school instead when he felt frustrated. He also had a safe place he could go to to meltdown. When he was little we had a little teepee put in his preschool that he could go to to have private time. As he got older it was a place in the classroom away from everywhere else and these days it is a special classroom he can go to when he needs some time out.
I hope that helps a little and obviously every child is different and trial and error the best course you can take.
In my next post I will write more about what to do during an actual meltdown but for now, trying some or all of these techniques will go a long way to heading them off at the path.
Have faith, it does get better. You become stronger, more capable and knowledgeable, and they will learn and grow too. In the case of my son, as he has matured he has managed to deal with his meltdowns by keeping them at home as much as he can and they have certainly reduced in both number and severity. And remember, they’re our babies, they need our love, support and guidance. God wouldn’t give you something you are not strong enough to handle so have faith – you are stronger than you will ever need to be and you can do this!
I believe in you because I have learnt to believe in me! Good luck!