This is a guest post by my husband Nick, he has been really supportive of The Autism Page so I asked him to share his thoughts with us as an SEN Dad.
A few months ago I attended a Communication in Autism evening course arranged by our speech and language therapist. She has done some great work with our youngest and it was nice to be able to attend as normally these things are in work hours.
I was there for the recent diagnosis of our youngest but as we have been through it with our eldest too, it was nice to be able to talk about things with some experience rather than just the theory. To be able to see where following some of the techniques and tips can get you rather than being overwhelmed with so much new info after a diagnosis.
It made me reflect on our journey and how far we have come. Of course there have been (lots of) hard times and lots of backward steps, but to see where our kids are now compared with a while back is amazing for me to see.
So, communication. Obviously we all have different circumstances and I am not an expert at all but wanted to share what has helped us over the last few years. These are the things that have made a big difference to communication and shared attention with our little ones and means less anxiety for them.
Plan for the long term
This is a biggie, I was lucky to have a partner that did this. I have to be honest and I struggled to realise this at first. I would have quite happily stopped after the first 20 times you do something and the kid ignores you. But if you do that then you don’t see the kid actually doing it the 50th time. So thank you Jade for sticking with it and making me stick with it.
At first our kids would walk away or pay no attention and now our kids sit there and engage with TEACCH bags and Attention Autism and it’s just the best. Having this shared attention is precious. It means school is easier and I never thought it would have all been possible a few years ago. They may look like they are not interested but the chances are they are paying attention, doing it often makes it part of their routine.
So try to always think a few years ahead and stick with it, and try again and again, you will get there and so will they.
Try things again
Sometimes things just won’t work or kids don’t engage- they are not ready or it is too much. Life is so busy that it’s easy to forget or to think ‘well it didn’t work before’. But often a few weeks or months makes all the difference and it works well when you try it again. Whether it is backward chaining for learning to dress themselves or a new activity, trying again can be really successful.
One of the hardest things I found about my eldest at first was not having that typical interaction you get with kids. When they come and sit on your knee and ask questions about stories and things like that. Our eldest doesn’t talk much but he definitely does communicate.
What I call intensive interaction is basically communicating with him by following his lead. We all make noises at babies and they react so of course we can do it with older kids too. If he makes noises I copy them, or arm movements, or pretty much anything. We have long conversations of ‘Da da’ ‘J—-, J—-‘, ‘Da Da’, we have lots of eye contact and laughs and giggles, sometimes he tells me a story making all sorts of amazing sounds, or a game of peekaboo or clicking noises. The joy it brings both of us is just the best. It is lovely for me, but it is not really about me, the look in his eye when he sees us communicate brings tears to my eyes.
Routine and visuals- helping anxiety
It seemed that a lot of issues we had with our kids revolved around unknowns- not knowing what was coming next, things changing, not having a routine etc. I would say the biggest thing to help our kids anxiety and worrying was to introduce visuals– telling them what they are doing now and next, or a schedule for a trip or a social story for a visit to the hairdresser. These things make such a difference.
They are now happy to go to places and go away and we have far fewer tears and meltdowns. They look for these visuals and we make sure we prepare them in advance- for holidays it may be a few weeks ahead, for a haircut or dentist we read the social story the night before, for a trip to the park it is in the morning. Sometimes things change, so we try to adapt the schedules to reflect that. For us, these schedules led to PECS which allows both our boys to speak and communicate.
Trust yourself and fight for them
You know your kid best. Trust yourself to do what is best for them. We have so many people giving opinions and chirping in, family and friends, school, health professionals etc, most will be well meaning, some judgemental (no I am not a bad parent and no, they are not just naughty) but they don’t know our kids like we do.
You know what your kid needs, in this day and age there is no funding for things and you need to be that squeaky wheel that gets the grease (or the person who gets what you want just to make you go away). Fight and chase things up- do not assume that people will get back to you. It is not the way it should be but that is the world we live in. There is a lot of support out there, there are some great parent groups, just be careful where you get your info from.
Pre covid a lot of places had started to do quiet openings for those with sensory needs. We went to the cinema, to the Bristol science museum and to soft play. These events are great as they are quieter and take sensory needs into account. Who knows what will happen with things after the virus settles down, but I really hope these events come back again, there is a long way to go to battle ableism but there is definitely more awareness of autism recently. Let us hope it continues to improve.
Communicate with each other
I went to a friend’s 40th party (yes, who knows where the time has gone!) last year and we got chatting about families. Pretty much all these hard working, capable people said having kids is the hardest thing they had done, and only now they were out of the hardest, sleep deprived, years had they realised how much it affected them and how glad they were they had stuck at relationships (and how many ridiculous things they had said to each other in that time).
So if that’s what it’s like for any parent, I think parents of kids with SEN are real life superheros. It’s bloody hard. It’s brutal and relentless.
We have certainly said some silly things to each other. We are learning to communicate with each other better now, so before even worrying about how to communicate with a child, make sure you figure out communicating with your partner first. Whether it is to agree a bedtime schedule so you are consistent, or how you want to help your kid, it is really important to make sure you are on the same page. To some this comes easily, for others, like us, it is definitely something that takes work (especially through all those tired years). It may be with a partner or friend or family but try to find time to sort these things, it will definitely make it easier. We are all human and can just do the best we can.
I need to say a massive thank you to Jade for all the effort she has put into our kids and all the help she has figured out for them. We have been lucky to be able to work as team.
I would love to hear anything that has helped you communicate with your kids or any top tips you have. Thanks for reading.
Such a good post. You are right, you HAVE to try to think a few years ahead, bizarre though it may seem. My son benefitted so much from PECS and Makaton – now and next reduced the meltdowns massively and using PECS to cement a night time routine was a complete game-changer.
I find planning for the long term challenging – I tend to deal with the here and now but know a longer term view is needed. Thanks for the reminder and hope to see you again on #spectrumsunday