Here in Australia, we are very lucky. Early Intervention receives a lot of government support and funding, so at least one hurdle has been removed from our path. It has only happened recently, but at least it’s happening so I won’t complain. This means that we were able to put Michael into ABA therapy immediately after diagnosis. I have not had to become a super parent in the same way that parents in other countries do. I do not have to do the 25 hours plus per week by myself. And of course I have been very lucky that my husband is practically Superman and can work full time while doing about an hour of therapy per day all by himself. (Hands off, he’s mine!)
In many other places, there is little to no support. I have a friend that moved to Australia from London and she says there was next to nothing there. Her husband was on a very high income so they did ABA therapy anyway, but for most people it was out of reach. Your family may be a bit far too help, or working. You may be a single parent. There are many challenges, in addition to the financial ones, that autism parents face.
I have therefore decided to put together a short guide with some ideas of what to do with your children if you do not have access to a lot of help. Even if you do, it is always good to get some ideas and try new things with your little ones.
Before I start writing, I need to add a disclaimer. Super parenting is not going to ‘fix’ your child. It is not a cure. If you want a cure, this is probably not the blog for you. All these tips can do is teach important life skills and make a small (but measurable) difference in their lives. You are using their strengths and interests to help them manage their challenges, whatever those are.
And the other important thing to note is that it is in no way better than early intervention. Or even close to as good. All research shows that intensive early intervention (with a lot of parental involvement of course) has the best outcomes. But you already probably know this. And yet the $100,000 necessary for a proper program have not magically materialized out of the air. So keep agitating for funding and for early intervention. This does not replace that. Keep looking for charities like PEAT in Northern Ireland that help fund early intervention if your government doesn’t. But meanwhile shelve your parental guilt (I know all about it) and get on with it yourself.
While you are waiting in those lines for special schools and funding though (and they can go for years) here are some ideas on what you can do meanwhile.
Assess Where Your Little One’s Strengths and Weaknesses Are
The cheapest way to do early intervention, is to do it yourself. However, in the absence of someone to tell you what to do, you might feel lost and overwhelmed. And often it can be so hard to know where to start!
I think the first step is always to assess. When Michael started his early intervention, his therapy centre gave us an assessment to fill out. At the time they were using the Early Start Denver Model Curriculum Checklist for Young Children with Autism. This is made up of a number of developmental check points in the domains of Receptive and Expressive Language, Social skills, Play, Imitation, Gross Motor, Fine Motor, Personal Independence, Behaviour and Cognition. It is especially geared towards children with autism. It took about a month to assess where he was at in every area and I really had to be very honest with myself. But it was worth it. If you don’t know where he’s at, you may start at a level that is too difficult. And that just isn’t fair on them.
We started at pre-level because of how low his skill level was and I recommend that if you do purchase the booklets (it costs about $60) you go through from the very fundamental levels. I also recommend that you ask at least one other person to fill out an assessment with you. You may be surprised at how differently a child can act with their parents, compared with other people.
It comes with 15 quite easy to use booklets and can be used to establish individual teaching objectives.
It can be overwhelming to do something like this. The books I recommend after this are easier. But a guide like this one will set out the milestones in order. This is important because often a skill will be almost impossible to master until the ‘prerequisite’ skills are in place. For example, it can be hard to learn how to talk if you can’t imitate, and establish joint attention. A guide like this one will show you what to do in order. And you can always skip to the bit that you need in every individual ‘field’ if your child is very good at some things and very delayed at others.
Get Ideas From Everywhere
Getting ideas from as many different places as possible is important. Some of these will come from your occupational therapist or special school. We are very lucky. If we have any questions about Michael’s behaviour we can ask our supervisor and she will give us some great ideas on what to do with him. For those that don’t have access to experts like her though…other great ideas can come from other parents or books. Some books you can buy are:
“An Early Start for Your Child with Autism : Using Everyday Activities to Help Kids Connect, Communicate, and Learn” by Sally Rogers (and others)
Look After Yourself First
I have a post about why carers need to care for themselves first, that I keep coming back to. It’s important for us as special needs parents to recognize that we have special needs too. We are already super parents. Right now. My son is alive, he is going to eat three main meals and lots of snacks, and his bedding and towels are clean. That’s an A plus right there. You are actually spending time in your precious down-time reading this blog, and researching activities. That makes you a super parent. Right now, at this moment, on this day and all the days, you are doing enough. Anything else I do is for bonus credit. If I don’t do it because I can’t, that’s ok too. The theory that autism is ‘caused’ by refrigerator mothers is dead.
When you get on a plane, they always tell you to put your oxygen mask on first, before you help your child. It’s so hard to grasp the importance of your own diet, your own sleep, your own sanity. But without it it will be really hard to have the patience level necessary to teach our little ones new skills. I know I can handle two hours of super parenting per day. Sometimes it’ll be in a row, sometimes broken up. The rest of the time it’s just regular (but also super, by the way) parenting.
Know Your Limits
You must recognize there is a limit to what you can do. There are special schools, there are professionals, that can help you. And even they struggle and don’t know. You, as a parent, can help your little one improve. But all you can do is your best. Your resources are finite.
And it will not ‘fix’ them or ‘cure’ them. The aim is simply to improve their quality of life a little bit every day. And it is very possible that you will try over and over again and fail anyway. If your child gets to 10 and struggles with everyday tasks, or suffers from anxiety or depression, it is not your fault. Repeat that again. It is not because you did something wrong, or because of something you didn’t do. All you can do is your best. ‘Super parenting’ can be used to guilt trip us about what we could be doing and haven’t done. There is always something I could be doing differently every day. But remember even if you did no super parenting at all, you have done normal autism parenting. Olympic level parenting. You have done more than enough today.
Your First Focus Should Be On Sleep, Diet and Exercise
It is a sad fact that adults with autism are 2.5 times more likely to die prematurely than adults without autism. Some of this is to do with epilepsy, but a lot has to do with poor communication and poor diet. Sleep is also a problem. There is a great fact sheet on sleep that has helped us tremendously (also melatonin is amazing).
It is important to try over and over to improve your little one’s diet. And encourage exercise. Diet and exercise are important for all our children, with or without special needs. It might just take a bit (lot, heaps, immeasurably more) work to encourage our children with autism. If you need some tips on food programs, we have introduced a food program for Michael that has worked fantastically. When he started he was eating three things and screaming every time anything else was on the table. Now he eats anything I give him, and runs to the dinner table. Vegetables, fruit, meat, fish, seeds, everything.
Exercise is also important. Often, exercise might happen anyway. My son has ADHD so he quite literally bounces off the furniture. But I still encourage him to channel that energy more productively. Rather than just run backwards and forwards, I’ll teach him to kick a ball, or climb a climbing frame. Sport skills will always be important to children and boys especially can avoid a lot of bullying if they are good at sport.
Then Look At The Communication Skills
Children on the spectrum will often struggle with communication skills. They might have a huge vocabulary (my son only understands about 50 words, but others have thousands or millions). But if they don’t use them to communicate their needs, it’s not very useful.
Let me tell you a story about a very intelligent, high functioning little boy I know. He was in preschool and he wanted a toy. He stood right under it and pointed up at it. Now, he didn’t get a teacher or ask. Even though he could talk very well. So no one helped him. Eventually he went to a nearby blackboard and wrote ‘HELP!’ on it. That’s a good first step. My son, who has a much more serious cognitive impairment and has no words, could have communicated his needs with the teacher much better. Just because we have practiced this at home thousands of times. So it just goes to show that how ‘severe’ your autism or how ‘low’ or ‘high’ functioning your autism is will not determine your quality of life. But how well you can communicate, and your social skills, will have a huge impact.
My son doesn’t talk yet. But his receptive and expressive communication skills have improved hugely since we’ve started therapy. We practise simple commands with him every day. Things like ‘stand up’, ‘sit down’ and ‘stop’. They make my life much easier when we are out and about. Especially stop. He doesn’t always do it, but when he does it’s wonderful. We are now working on teaching him labels for common household items like ‘apple’ or ‘sock’.
We do a lot of practice with picture communication too. This is our way of using his strengths (children on the spectrum are very visual thinkers) to teach him to engage with us. We have a book with flash cards and Velcro. He gives us a flashcard to tell us what he wants. You can buy a picture communication (PECS) starter kit for about $200 and it includes most of the things we have used this year. Instructions are included.
He has also learned to point, to wave ‘hi’ or ‘bye’, and to take my hand and lead me to where he wants me. This is a huge achievement and these things have taken us a year. But they are worth it if one day he can tell me when he has a headache or his tummy hurts.
Respond To Every Little Sign of Attention
Often it can seem that kids with autism pay no attention to you at all, when you sit near them. They might not care if you are there or in another room. They might even prefer it if you are somewhere else. But in reality there are many tiny little signs that they make.
What I will do when my son looks at me or seems to notice my existence, is make a big deal out of it. I try to draw him into my world. I might do this by sharing his interest in the toy he is playing with. It depends on the circumstances. If he is engaged in something productive, I will often try to join him in it. I will grab that push toy and we will look at it together. And I will make sure that any toy I see him pay attention to at all, I take and play with. Loudly.
But with my son, specifically, this rarely happens. If he is left to his own devices he will run up and down, or stare at his fingers. My techniques then are different. I will get a reward he wants, get his attention that way, and encourage him to perform a task I want him to perform. Most of these tasks are play skills – playing with toys, drawing, stacking blocks. He is a child and children learn through play. Then once he does what I ask (and I will only ever ask him to do simple things well within his range) I will give him the reward. And as often as possible, I will make the reward something social like tickling, singing or any other activity that he enjoys that involves us playing together.
Break Everything Down Into Impossibly Small Steps
It can be very hard for children on the spectrum to learn things that seem very easy to us. Things like pointing or waving, that other children learn all by themselves by the age of 9 months. It took us six months to teach Michael these things. First, we fully shaped his hand into the point or the wave, then we gradually faded to his wrist. Then to his elbow. And the shoulder. Finally, we just had to shadow prompt him or even just model it for him. And after all that, all he had learned was how to physically do these things, not what they meant.
So then we taught him to wave when someone said ‘hi’ or ‘bye’. Or to point to something he likes. Then to choose between two things and point to the one he prefers. Next we will teach him to point to something that’s a little distance away.
I know this is technical and you probably don’t care about Michael’s pointing journey. Maybe your child is much more high functioning and doesn’t need this. You will know. But my point (pun totally intended) is that whatever you teach, you should break down. Especially if your little one is having trouble with it. If you are teaching them to drink from a cup, start from a tiny amount of water. Teach them to take the cup in two hands. Then lift to the lips. Then hold at an angle. And then put it back down. And celebrate every tiny step, because this is a huge leap for them that they might never have made without you.
Don’t Let Them Get Away With Bad Behaviour
Now, to be clear here, a sensory meltdown is not bad behaviour. Stimming is not bad behaviour. There are other ways to deal with sensory issues. I have a post about this coming soon. When I say bad behaviour I mean ‘mum didn’t let me watch cartoons so I’m going to throw a tantrum for thirty minutes’. What constitutes bad behaviour will be different from home to home, but you’ll know it when you see it. Autism is not an excuse for avoiding your homework or your chores. It may make it harder to do, and they may need more help doing it. But behaviour management and discipline is an important part of every parent’s job.
I have a post on handling problem behavior. Pretty much it can be broken down into managing your expectations, ignoring bad behaviour, and rewarding good behaviour. In my house, we are against smacking. I don’t think it has ever been proven to work as a form of discipline. But it is not my place to tell you what to do with your kids. What works for us is to be firm. If I want to take away the iPad, I will never give it back with a tantrum. When we are at the shops and he wants a lolly, I will never give him for a tantrum. Tantrums do not get rewarded.
On the other hand, I am big on rewarding not throwing a tantrum. Learning self control is really hard. Many adults don’t do it so well. So if he goes to a situation that I know is hard for him, and exercises will power, I will reward that. When he really wants something and I say no, and he stays quiet, he gets a reward. Not the thing I was removing to begin with (that kind of defeats the purpose), but something else. If he’s patient he also gets a reward. Over time, as tasks become easy for him, I fade these rewards. I might only give it to him occasionally, and he won’t know when. Or I will expect him to ‘behave’ for longer, or give him tokens rather than actual physical rewards.
Include Them In Your Activities
Therapy should, theoretically, happen in your everyday setting. When you encourage your little one to try the slide, and not just stay on the swing, that is therapy. If you introduce a food program and try to encourage them to at least touch a new food to their lips, that’s therapy.
This is where you can use your own discretion and common sense. Yes, it is important to teach your little one to go shopping. But maybe not at 5:30 pm when everyone is there after work. Yes, it’s important that he should be able to go to the pool, just maybe not at the busy time on Saturday afternoon.
Outings are great. In moderation. Family get togethers are great too. I spend a lot of time helping Michael play with his cousins. My rule with inclusion activities is to do things until he starts to get uncomfortable, then continue for five seconds and pull back. Then try again in half an hour. Some great ways to include them in games with cousins is with things like ‘wheels on the bus’ or jumping on the bed with the ‘five monkeys’. I also love jigsaw puzzles and songs like ‘ring around the rosie’.
Use As Little Force As Possible
Sometimes, you have to use force with little kids. It’s unavoidable. Things like taking medicine when they’re sick, or getting into the pram to leave the park. I probably have to use it more with Michael than other mums of two year olds do, simply because he doesn’t understand my explanations. He doesn’t understand that he has to drink this because it will make him feel better. He only knows it tastes yucky.
But in general, I have been using it very little. I never pull him by the arm unless we are near a busy road and he is trying to run into it. In therapy, he is free to leave any time. He does have to give me a GO visual first (we use visuals for every situation in life). But then he goes.
My job is to motivate him so much that he wants to stay. I need to offer a reward that will bring him over from his corner, and over to me. I have a post on how I motivate him but mostly it comes down to tangible things. It might be time playing with his favourite toy, or time on the iPad. Food works well. Then I break it up into little pieces and give him a bit at a time. Or I make him work for tokens, and once they add up give him a bit more.
Prompting and Repetition
Repetition is the key with some things, depending on the skill. Many basic skills Michael takes a very long time to learn and needs a lot of help with. Fine motor skills like putting a peg into a pegboard or the correct way to hold a crayon. Learning how to put the rings on a ring stacker. These things can be very hard and require a lot of prompting.
The key thing is to fade the prompts gradually. So start with a full prompt, then fade to the wrist, to the elbow, and the shoulder. This can take months, depending on your little one’s abilities and on the difficulty level. Reward every attempt though, no matter how small. It’s hard for him to sit there and do this stuff over and over, and you should acknowledge that. Then move on to something that is completely different and involves no repetition at all. Running around the house works well for us.
Once he’s mastered the basic skills through repetition Michael has to start figuring things out for himself. So for example once he can put all the rings on a ring stacker, physically, he needs to start learning by trial and error what order they should go on. Initially, I still need to fully prompt him for this too but eventually I will fade and leave him for longer and longer. And I will get different ring stackers and do it in different rooms to make sure he can generalize the skill.
It can be hard to watch him get things wrong. He can get frustrated. I try to jump in and help the smallest amount possible. It’s ok to get frustrated a bit when you’re trying to figure out a problem. But I won’t make him do it for much more than a minute, at this stage, before helping. He’s only little.
Maintaining Skills Already Mastered
Just as important as learning new skills, for many children on the spectrum, is maintaining the ones they have already learned. Many parents have told me (and it’s very true for us) that if you leave something, even for a few weeks, it can just disappear. Even something you have been learning for months. You might have been playing with beads and figuring out what goes where for six months. Leave them for a few weeks and your little one might look at them like he’s never seen them before.
This can be especially true with language. Half the time that I spend on being a ‘super parent’ is spent on repeating things he already knows. Maintaining commands and important skills. Even if I’m in a rush, I will make him feed himself with a fork at least a few times. He might be tired at night, but I will still make him try to take off his own t shirt and put it into the laundry hamper. His picture communication book goes everywhere with him. If he wants something, even if I know what it is, I will prompt him to get the picture. This is because if I leave out a picture even for a week, he will completely forget what it stands for.
Love and Acceptance
The most important job of a super parent, is one I know you are already doing very well. That is, of course, loving our little super heroes and telling them about it as often as possible. Michael knows, no matter how difficult the day has been, that I will always be there for him. He knows I love him now, as he is, and whether or not he can learn to do his 8 piece jigsaw puzzle. And he realises that even though I may not like bad behaviour (if it happens), I love him very much. I get an overload of kisses and hugs during and after therapy, and for a kid with ADHD he can look into my eyes for a very long time.
Everything I do, has to be fun, enjoyable and based around what he wants to do. He knows all the important things in life already. I am just helping him with some of the others.