Stress is a big part of special needs parenting. Any parent stresses and feels guilty about every decision they make all day. We do so two hundred times more. Parents worry about what school to send their child for the best mix of HSC results and an all-rounded education. We worry that our child may never learn to read, may never learn to talk or to interact, in the wrong setting. Other parents worry about organizing the right co-curricular activities, and how to get their kids there. We worry that our kids may never learn to throw a ball or to play a team sport because of trouble understanding rules. Other parents worry about fussy eating. We worry that our child will eat chicken nuggets and white bread for the rest of their lives.
We have good reason to be worried. The decision about which therapist to trust, which intervention to do, can make a massive difference in our child’s life. And by extension, in our life. ABA can increase IQ by 30% and adaptive skills by 20%. A bit of OT and speech will only increase IQ by about 8% and adaptive skills by 5%. That is a big different in my life and in my child’s. Early intervention is worth the effort. Anything else I write below comes with this disclaimer.
And what about other decisions? Research shows that full inclusion in a mainstream school will sharply increase an autistic child’s chances of graduation (often by as much as five times) and will improve their academic and social skills compared to a special school or a special class. It has shown that in every single study done for the last 40 years. Not one well-performed study has ever shown a benefit to a special class or a special school for the students.
Yet they will remain popular as long as mainstream schools refuse to put in much effort into including children with disabilities, and keep pushing them out. I know first hand how hard it is, in real life, to find a school that will accept a child that is not ‘high functioning’ and make a real effort to include them. So many of our decisions come up against real world limitations. Even if we know the optimal one, we may simply not be able to make it.
As a special needs parent you know there is always more you could be doing. Engaging your child more, researching more, making more visuals, booking them into more schools. And you know that if you don’t do it now, you will get more stress later. When they are ten years older, or twenty, or thirty, and you still need to drive them everywhere, go with them to the supermarket, maybe even change their nappy. And what causes us the most stress is the thought of what will happen to them when we are not around anymore.
As a type A personality, I could let this worry and stress take over my life. Plenty of other parents do. And sometimes I do stay awake at night worrying about Michael’s future. Trying to imagine what he will be like at age twenty five and plan accordingly.
But I don’t. I sleep quit well, when my son lets me. I usually follow my Seven Special Needs Parenting Commandments. And leave the stress to other people.
Be involved in therapy. But not too involved.
ABA is a wonderful tool. And it works best when parents are involved, because we can continue to use the techniques in the times when he is not in therapy. It has helped me to identify why he may be throwing a tantrum, and what to do about it. How to teach him a new skill. And reassured me that at all times he is making progress in at least something (I just have to look at the data sheets!). I never hesitate to email or talk to all Michael’s therapists. My opinion matters.
But if a parent does TOO MUCH therapy, it can cause more stress and can make you burn out. You can get too hung up on small details, if you let them rule your life. Plus there is really only so much intense play a human being can handle in one day. For me, my limit is about five hours a week.
Do not plan more than 12 months ahead
This one is probably the most important and the hardest to keep. Michael is three years old but I stress about his high school, about where he will live when he’s an adult, and about every year in between.
Some stress is productive. Some planning is productive. For example, you often have to sign children up for high school many years before they start it.
But repetitive thoughts on a topic are completely unproductive when you have no reliable information to base your plans on. I have no idea what Michael will be like in three years or five years, let alone fifteen. Frankly, I have very little idea of what he will be like in six months. If I’m completely honest with myself, I don’t even really know how much he understands NOW.
So once his name has been put down on a few high school lists, I have banned myself from all further planning. I am allowed to think about his next twelve months – which means preparation for preschool. And preparations for a baby sister. That is all. And that is more than enough!
Don’t fixate on the worst moments and the worst days
Michael has many great days and many great moments. Times when I realize he understood something that I never thought he would. Or when he has learned something new, or handled a difficult situation well.
But being human, I tend to fixate on the other stuff. That time he couldn’t handle a family get together. If he can’t handle this, my mind whispers, how will he handle preschool? Or school? How will he survive high school? Or the world? I also fixate on that task he hasn’t made progress on lately, or that skills he can’t master.
So my trick is, for every time I catch myself stressing about something he can’t do, I deliberately think of something he did recently that impressed me or pleasantly surprised me. There are always so many.
Accept that most things in life are not in your control
I should really put this under number 1. Yes, I have my big disclaimer at the top about all the benefits that a good decision can have. BUT. The decisions we make as special needs parents will be from the options open to us. The optimal option may simply not be possible.
You may not be able to afford 35 hours of ABA a week. Or your therapists may all be traveling or sick this week. You can agitate for better services, you can set up a non profit or lobby the government. But our resources are finite. There is only so much we can do. You may not be able to send them a good mainstream school because such a school may not exist in your general vicinity. Special schools are popular for a reason. So is home schooling. There are many other options that may be the best available to you.
Your child is not a blank slate
And even if we make all the right decisions, things may not work out. Our child is not a blank slate. He is not a cake where as long as you put in the right ingredients and you stir correctly, he will come out the same every time. You might put in hours and hours of work and see fewer results than other parents. Or you might do a few hours here and there, and your child blossoms. But you can’t do anything about that. It is not in your control. At some point you have to say ‘I did the best I can, my child is happier and better off than they would be’.
Yes, we work on them and extend them. But in the end their genes and where their IQ is to begin with, will determine about 50% of their outcomes. A lot of the rest will depend on the individuals they meet along their way. On their peers, their teachers, their school, that time they met that guy and had that conversation when they were fifteen. The kids will be alright. Seriously.
Stop Comparing. Or at least compare fairly.
You know what determines happiness? The difference between expectations and reality. That’s it. This is why many migrants end up unhappier in a new country than they were in their old one. Even if the old one had no running water or proper sanitation. Our happiness is all about where we think we should be vs where we are. Every time we compare ourselves to someone that has something more than we do, we are robbing ourselves of happiness.
Special needs parents do this a lot. Because of course the comparison is always around us. We always see those other kids. At the playground, at preschool, at family functions. Online. I have seen one year olds easily do things my child cannot. Recently my sister in law was laughing that my niece slept in until 8:30 in the morning and they were getting worried about her. My mother in law joked that she shouldn’t say that to me. And I actually laughed very hard at that but honestly I don’t care anymore. These things do not touch me. Yes, Michael woke up at 4:30 that same morning, then went back to sleep at 7:00 and got up ten minutes later. And yes sleep is the least of the differences between them.
It is possible to compare all day long. It is likely Michael’s cousins will be making beautiful portfolios about the Crusades at the same age my son will be first learning to write his name. They will be advancing in tennis, dancing, swimming 50m, at an age when he is learning to catch and throw a ball or learning to kick his feet. And the differences will only grow with age. It doesn’t matter if someone points it out to me or not. I will notice. And if I spend all my time noticing then I will never be happy.
Remember: you would probably be just as stressed with a neurotypical child
But the fact is that it doesn’t matter how advanced our kids are. If we had never heard of autism or intellectual disability, we would still be stressed or unhappy about something. I can’t tell you how stressed my parents were about many things in my life when I was growing up. And they both had good jobs, lived in Australia, and had an only child. Who, might I add, got a scholarship, and was in the top 10 in her class for pretty much everything. I got myself to and from most co-curricular activities and they didn’t do a school pick up from about year two. They were still every bit as stressed as I am now. Probably much more so.
If you do compare: compare the good AND the bad
I have found it is impossible not to compare at all. But if you can, try doing that. Otherwise – compare fairly. Compare everything. Not just the things your kids can’t do, or the things you don’t have. There are many difficulties that come with having neurotypical kids too and if you can’t stop comparing, then you need to notice this as well. Notice that time your kid was keeping themselves occupied in the corner while her brood wouldn’t leave your sister alone. Or the time your kid was really sweet and the others were little brats. Or the other time your child was so happy playing with a piece of string while the others were throwing a tantrum in the toy store. Understand that it is just as stressful for other parents when facing what you think are comparatively trivial and simple situations.
Yes we are all running 20km a day through rough terrain, while it may seem like other parents are doing a light 1km jog sometimes and complain about it. But the fact is you became a trained marathon runner over time and you can handle that 20km daily slog through the desert. For someone else, a 1km jog can be harder than a 20km run for you. Instead of looking at them, increase your own endurance and concentrate on how beautiful your scenery is. And remember that time when you were starting out and that 1km jog was pretty hard.
At least once every two weeks. Find a good babysitter. Or leave the kids with your partner. And just leave the house for a meet up with friends or anything else not work or child related. For at least three hours.
You need rest. You need to think about all that life you have outside work and children. Especially if they’re not at school or preschool yet and are in your face all the time. And even if the person you leave them with is not as good as you, or does things differently, try to leave it all at home and just go and have high tea with your friends. It is a massive hassle to arrange the first time, and to train someone to take over from you. Or to do all that paperwork for respite care. But it’s worth it if you can make it regular. And your kids deserve to have someone else in their lives.
Realise the world will not end if they watch the iPad for an hour while you have tea and finish off Game of Thrones.
Really. Even if that other parent you know does twenty hours of therapy every day. I was never allowed to watch anything by my parents or play video games. I had a very strict bedtime. My husband was allowed to do whatever he wanted most of the time. He has spent hours on video games and mostly slept when he felt like it. Our end results in year 12 were almost identical and we worked on parallel streets in the city. See point 4.
All that time that you are no longer fixating on the bad, or stressing about things in the distant future, can now be used to watch crappy TV shows. Or do whatever it is that makes you happy and relaxed. You need to take the parenting guilt, scrunch it up in a tight little ball, and push it to the bottom of the laundry basket where you will never ever see it again.