The 12 Steps to Being an Autism Parent: making amends

Mea Culpa

Remember my Steps to being a special needs parent? - recently I had cause to return to the theme and examine the following. As usual they all look kind of the same:

8. Made a list of all persons we had harmed, and became willing to make amends to them all.
9. Made direct amends to such people wherever possible, except when to do so would injure them or others.
10. Continued to take personal inventory and when we were wrong promptly admitted it.

For years now I would have been in the camp of wanting everyone else to make amends to me. Sorry but when you find out you have not one, but TWO kids with intensive behavioural needs you very quickly find out who you can count on and who will spectacularly and hurtfully let you down.

After 10 years - I have learned to let go of some of that feeling. 
Some of the people have apologised.
Some of the people have made up for it in other ways.
I guess some of them have realised what a selfish mongrel they were when they had their own children and realised how difficult it was with normal kids, and what they would do to protect their children if it needed.
There are one or two who have never acknowledged what a let down they turned out to be. But then they are in denial about a lifetime of inappropriate behaviour - me and my kids are just one chapter.

I’ve also learned to let go of some people. I would call them acquaintances now as they were never really my friends.
Burn me once, shame on you. Burn me twice and I will never have anything to do with you again.

Recently however, I had cause to think about how I might take inventory of my own misdemeanors.

I’m being careful about this because I do not believe in the “I’m sorry but....” apology where you go on to explain that you were totally justified in doing the wrong thing and hurt the person all over again.

If you are still angry say nothing until you can calm down and apologise properly - for what you did. Explain how you got that way, but don’t use it as an excuse.

Rather than losing face, a good heartfelt apology can make the person you harmed respect you even more. When someone knows they messed up, recognises the harm and wants to make up for it I think they are brave, honest, constructive - and above all admirable.

My epiphany came during the long Easter Holidays in April when I was having a tough time with Gracie. She does not do well in the holidays as she likes structure, routine and someone to go each day. For the first week she did surprisingly well and I thought a new visual schedule explaining that there was no school each day was helping, so I was tweeting about it, as you do.

In the second week Gracie lost it and there was an increase in repetitive obsessive ritual behaviours where she will she bring you something, like a Dvd or book, and have you hold it in a certain way about 25 times before she can calm down enough to put it back in her room. - Or open then close a window, adjust a mirror, a quilt or turn the tv on and off.
After a week of staying home with just Mummy, (all our Angels were on holiday) she was going into the red zone of OCD. The only escape is to put her her room and lock the door, which I didn’t want to do (yet) so I was letting off steam on twitter. There are other parents in exactly the same situation for the same reasons and it helps to have their empathy.

Then someone who I had been following for a short time sent me a direct message asking if I had read a book by a Chiropractic physician who “treats” the symptoms of ADHD.


This might not be in the Top Ten Things not to say to a parent of a child with autism - but it should be.

No I did not read the book about the Horseboy/Playboy Model /Ayerverdic/Homeopathic/Snake Oil /Bat whisperer who cures children with autism.

And I am not going to.
Because I find that ten years of attending courses and listening to people who actually work with autistic children and use evidence based behavioural interventions and teaching methods that are individually tailored to my children's needs actually work.

It is just that my children are people and from time to time we all need a break from each other.

And I responded to this well meaning tweeter along those lines. I was actually super super angry but since my internets were not working properly I was unable to add any more choice comments so I just packed up my computer and took the two of them out to scream in the woods for a while.

When I got back I had a message of apology in my in-box. I told her not to worry about it - I was just letting off steam but when asked what would make up for it I flippantly suggested chocolate.

2 weeks later a parcel arrived from Australia.

I expected a couple of Cherry-Ripes, which are my favourite Australian Chocolate. I got cherry ripes, and more cherry ripes and dig down for even more cherry ripes. I also got a meticulously chosen selection of other exclusively Australian treats. The box was almost too big to carry with two hands and had been AIRMAILED all the way from Australia. What a class act.

She also blogged about it here:  Life-lessons, apologising.

with an explanation as to why she had made her well-meaning suggestion and it is probably the most effective apology I have ever heard - and accepted.

And it got me to thinking  - who have I wronged with my rage? How often have I been wound up tight as a coiled spring waiting for some poor soul to say the wrong thing so I can explode.

Because rule one of Autism Parenting is NOT to get mad at your kids. It is NOT their fault they have a disability which affects their ability to process sensory input in every aspect of their lives.
No matter what they do you always forgive them because you have to. We evolved that way.

Instead I practice a kind of mental displacement where I get mad at "The System" that lets us down, or "People who should support and help us" or eventually some poor bystander who looks at me the wrong way when I am being prompted by Grace to hold her hair for the 15th time.

Or a well meaning child behaviour consultant who remembered a book that someone had once told them was helpful - and shared it.

So here is my apology: it's not you, its me. I'm sorry I hurt your feelings. I'm sorry I was intolerant. I'm sorry I am annoyed and jealous of your easy life, your capable kids, your ability to plan for a future where they will be independent and may even end up looking after you.

I'm sorry I'm such a crazy prickly person to be around sometimes. Chocolate and Wine helps.



Momx3 said…
You never fail to surprise me Hammie. Cant imagine you ever losing your cool as I've seen you keep it in some really "hard" situations. But, you did & you're big enough to realise it & apoligise openly. Well done you!
I realised reading this that I too have "snapped" at some people in the past while & need to take stock of my own affairs. Sometimes its hard when we get stupid (but well meaning) advice. But, if we can look back at the real reason it was given to us then I suppose it helps that bitter pill slide down easier.
Hope you enjoyed the choccie & if you ever feel like sending me a box like that I love Twirls, Flakes, Star Bars & Whole nut.............. xxx
K.Line said…
What a gorgeous post. I have goose bumps. You've given me a lot to think about, because I snap on a regular basis.

On the topic of Gracie's OCD. I can truly empathize. OCD has been a huge challenge for me since childhood, I think you know. Enacting ritual behaviour is so hard on the people I live with (of course it gets exponentially worse during stressful times i.e. times when I'm out of my routine. There's a reason I holiday in the same places, same hotels, even same rooms if I can manage it). I really hope that it settles down as the regular schedule returns. I feel for your daughter. xo
Nathalie is awesome. As are you. On patience, it's something I'm struggling to learn - with the help of coffee, chocolate and wine. And I have snapped at my kids, well one child in particular. It must be in the genes and I think we may be more alike than I want to admit xx
Truf said…
This reminds me of the Tim-tams you sent me years ago, before we even knew each other in person (did I mention I kept them hidden for a few months because wasn't able to swallow solids at the time :) Such a lovely gesture, both yours' and Nathalie's! And I'll put a mental note to learn to displace my anger - all too often I snap at M for not listening/concentrating/trying hard, and then feel aufull because of course it is not his fault.
Petunia said…
Wow a wonderful post and one that I'll remember the next time I make a well intentioned but flippant remark to someone. Its very easy to say "I'm sorry" but even more difficult to show that you mean it. I've been guilty of being short with people who ask my advice lately as sick of giving it and it not being taken and two minutes later seeing the same person ask for advice on the exact same subject so have been very glib with new parents who ask for advice. I think I have some chocolate boxes to fill... xx
Andra said…
Oh god I think I need to fill a lot of chocolate boxes by way of apology to some people, have definitely been too sensitive or had a huge chip on my shoulder and lost it when I shouldn't have. Excellent blog and for me a very timely reminder to learn to bite my tongue!
Tilly said…
I'm constantly biting my tongue and reminding myself that people are trying to be helpful, but when all's said and done they haven't a clue what my life with Nipper is like. The most recent time was last Friday when someone asked me why I thought Nipper was autistic as he seemed fine to her. I just politely said 'because a specialist said so!' and left it at that!
jazzygal said…
Wow. I am totally impressed... with both of you!!

I completely understand your upset and anger and it was very brave of you to write this post as it was for nathalie to do what she did.

As for the others over thje years.. sod 'em!

I too have been in a non-autism apology situation when I bit back the 'but' (it's still there btw!)and made the honest, genuine apology which was grudgingly accepted. Not everyone is open to receiving an apology...'cos they still have a 'but' in their head too ;-)

LOVE the new blog look.

xx Jazzy
Sister Wolf said…
Chocolate works. I remember my own tim tams.

Here is the thing. My autistic child is still abusing me verbally and emotionally even though he is 18 now. He still threatens to kill me or says "I wish you would die." He still bullies me and is twice my size.

I am becoming numb at this point. You love your kids with no expectation of reward, but when the result of all the love and support is just abuse and constant opposition, it's hard to maintain my compassion for him. He directs all his anxiety and rage at me, specifically.

I feel like I need to make amends with myself for resenting this behavior and for wishing he could be different.

On a brighter note, I am good at apologizing and meaning it.