If I were being completely honest about this, I would leave this page blank. Dealing with family is the hardest thing that anyone ever has to do. This is especially so when something like this is involved, and I’m not sure my way is the best way. Families can be…full of nuts challenging. They can also be fantastically supportive and make a huge difference in your child’s life. The difference between these things can be just a few hastily said words that you can’t take back. So these are some important things to keep in mind when dealing with your family, especially in the first six months.
Give your family time
An autism diagnosis does not really change much for most parents that I’ve talked to. It just clarifies what they have already been feeling for a long time. For their families though, who might see the child once a week for a few hours, it can be earth-shattering. They will need some time to get used to the idea. On average I’ve seen it takes six months to eighteen years for a family to really have this idea sink in.
From chatting to other mothers I have noticed it tends to hit grandparents the most. It is especially hard on grandmothers – and they may be the biggest source of conflict. However they can also be the ones that drive your little one to his appointments. They can clean your house while you’re doing therapy, and that baby sit while you and your husband go and talk to each other for a couple of hours. So whatever incredibly stupid and insensitive things they may say to you to begin with, and they definitely will, you just have to hold your tongue and wait it out. If you’ve ever worked in retail or any kind of customer service role you’ll know what I’m talking about.
Give them something to do
If you own a dog you know that it’s important to keep them busy – they can be wonderful members of the family but if you leave them on their own and don’t provide them with something useful to do, they will destroy your backyard, your shoes, and everything of value in the house. This is a technique I used on myself in the early days.
I didn’t give myself time to wallow in self-pity. Instead I spent as much time either researching, looking after Michael, or doing early intervention with him, as possible. Then I would collapse in bed and repeat the next morning. Similarly the best thing to do with a grandparent/sibling/cousin that wants to be involved in your little one’s life is to give them something to do. A good book to read is a great start. Lots of good information so they understand what you’re doing and what you’re dealing with. Talk to them if they’re willing to listen.
Some good books/sites to refer the to are:
- The Australian Autism Handbook is a great summary of all the research about autism, stories from parents, and covers all the ages from little kids to adults. It’s a really great starting point for parents as well.
- The Raising Children Network is a website that has a lot of great articles on autism, therapies, just everything you need to know. Fantastic
- Let Me Hear Your Voice by Catherine Maurice is a really great personal read. Written by a mum that had two kids on the spectrum who both recovered through ABA therapy. It is a good way to show your family what you are going through without having a mental breakdown right in front of them.
There are many others as well, these are just great starting points and you can go from there.
There will be wild theories. Just ignore them.
Remember how much you knew about autism before the diagnosis? If you were anything like me everything you knew about it could have comfortably fit on a postage stamp. Now, after you have read every site, watched every video, and of course spent every waking moment with your little one, you know a lot more about it. Your parent/auntie/sister has not.
If she doesn’t really want to be involved and is happy watching from the side-lines, that’s fine. This is actually a pretty big victory.
If they want to be involved, they will do so probably by finding the dodgiest website, talking to the most anti-vaxx crazies that exist, and reading about every miracle cure. Camel’s milk anyone? My advice is to set them on a good course with some great books/websites, and otherwise practise smiling and nodding.
If they suggest and then stop, then fantastic, this is also a victory for you. You can look into it, and then explain why it may not be a great idea. If they keep on about it after you’ve said that you have researched it and probably won’t be trying that vitamin cocktail, then just grit your teeth and try not to say anything too hurtful. It’s usually a good idea to wait a bit before you reply so you have cooled down (two weeks in Bali also helps).
Recognise the Denial Stage
I think all the parents I have talked to say that some of the people in their family are in denial about the whole thing. You will have probably gone through this stage yourself so it’s pretty easy to recognise it in others.
They think you should just push your kid more into unfamiliar situations, drag him into the middle of crowds, take him more to playgroup.
They will look at anything your little one does that is normal and clutch at that as the reason they do not have autism after all. See, he’s playing with his cars just like his cousin, that means he’s fine. See, she looked at me that time when I said hi.
Sometimes the million instructions that they shoot at your child will correspond with what your child actually wants to do. At once they will be absolutely positive that he just understood what they asked, and then did it. Wow they are better with him than you are!
You just have to recognize that this is part of their grieving process and let them get on with it. As a toddler gets older the autism becomes more clear and the denial stage passes.
Talk to your partner about it
I have heard some horrific mother-in-law stories from other parents and I have been thankful every day that my own one is completely wonderful and supportive.
One mum told me that her mother in law expected her to actually have food in the fridge every time she came around. Only she had two kids, one of whom had severe autism. I suggested that could be the mother-in-law’s task for the week – make sure this mum always had food in her fridge!
Another mum told me that her mother in law was constantly pushing her to take her three kids (two with autism) out to restaurants and to family functions. It was especially hard for her to do because they were on special diets, all under five, and the family functions were often at locations that didn’t have all the safety precautions she took at home to make sure her kids couldn’t run into the road.
I can’t really tell you how to deal with this, it will be hard and painful. It can be like running an emotional marathon (in addition to all the other stuff you have to deal with). I think involving your partner is important. Your partner knows how to deal with their parents. After all they have lived with them for a long time without murdering them in their beds. And any criticism or instructions can be better coming from them.
Involve them in the intervention
I will say, firstly, that I know very few grandparents that are actually involved in the therapy for their autistic grandkids. I have seen quite a few that learned how to do some of it and have a general idea. They might drive them to sessions, they might watch a few sessions, they might read some books. But I know very few that have been able to do it, mostly because it is really hard.
It is physically demanding because those kids do not get lighter just because of a diagnosis. Mine weighs as much as a small elephant, and loves piggy backs. Therapy can be emotional distressing. It is hard to avoid seeing just how hard your grandchild has to work to learn how to do the simplest things. It requires the ability to take instructions from a woman that hasn’t raised six kids and twenty-four grandkids. This woman might be telling you you’re doing everything wrong.
Most importantly, it requires so much perseverance and patience that I am still surprised at the amount of people that CAN do it even for a few hours at a time. My limit is two. However if your parents have the time and energy, and will take instruction, then you’ve hit the jackpot. Enjoy it.
If all else fails, move to California
The only other thing I can think of is to move to a foreign country for the next few years and come back when all your kids are over five and at school. Possibly through their early intervention. I hear California has some good ABA therapy centres, and it’s warm. Didn’t you always want to live in San Francisco anyway? Also, LA is nice.