My takeaways from the autism roller coaster (guest post)
Graham Chatterley, SEMH school leader – has kindly provided this guest post which offers a heartfelt insight into the ups and downs of being a parent to a profoundly autistic child.
Recently, I went to the North West Pastoral Leaders Conference, hosted by the excellent Daniel Sobel. The speakers were all very knowledgeable and did sessions that were very interesting, child centered and practical – which led to a positive day.
However one talk was a bit different. As is the case with other conferences I’ve been to, there was a speaker from outside education. Award winning actress and comedienne Sarah Kendall was that person. Although she could have delivered a crowd pleasing mini stand up routine, she chose instead to share her experiences of having a child with autism. It was an extremely heartfelt roller coaster of denial, frustration, sadness, despair, hope and joy. As she had the room feeling everything with her in the most powerful way, all I could do was nod along with everything she was saying because she was pretty much describing the roller coaster I ride everyday. There was a genuine interest in the room and so I thought I’d follow her lead and share my own experience.
Sunday 15th January 2012 was the second scariest day of my life. Complications at birth, doctors looking panicked and wife being rushed for an emergency C Section 9 weeks before due date. It all happened so fast, I didn’t understand how serious it was until afterwards. I knew something was wrong but I didn’t know how wrong – they had both been seconds from dying!
I have two vivid memories from that day. One is the helplessness I felt. Strangely, the other was them taking my shoes away and making me wear horrible heavy black Crocs while I waited in a corridor for what felt like days.
Daniel was born weighing a tiny 3 lb 3 ounces with a collapsed lung. At about six weeks we got him home and he was developing well, hitting his milestones and catching up, weight-wise. Then at 3 months everything changed. He hadn’t been well all week and my wife Eve was worried. She’d had him at the emergency doctors over the weekend and the GP on the Tuesday but was sent away as being fussy both times. Thursday was to become the worst day of my life – I made a decision I’d live to regret in perpetuity.
I went to Football. Eve clearly didn’t want me to go, but kept saying it was fine. I knew I should’ve stayed home but I was stressed out and the doctors said he was okay – so I went. Afterwards, I got into the car, picked up my phone and had a lot of missed calls. While I’d been playing, Daniel had deteriorated and been taken to hospital in an ambulance. When I got there a doctor was shaking my baby to get him to breathe – eventually ending in a seizure and him being resuscitated and blue lighted to Manchester intensive care. We found out later he’d had a combination of whooping cough and flu. The flu had made him too weak to cough and so the first two doctors missed it.
He fought through again and we got out about a month later but he wasn’t the same. The child who had been inquisitive previously wasn’t there, no noises were being made. The first thing he was tested for was blindness because he wouldn’t look at us. It was as if a reset button had been switched. We didn’t realise it at the time, but we’d just gotten on our autism roller coaster!
We had three other children at home and both worked with children, so we had a pretty good idea what was wrong but didn’t want to say it. The trauma of the birth, time in intensive care and the added stress of feeling that I should have been there when it happened, followed by the relentless appointments and general overwhelming nature of it all took its toll and like the other 80% of marriages involving disabled children – ours fell apart. We both made terrible decisions and hurt each other badly. However, despite the anger towards each other it was never in front of the kids who I still saw everyday. They still came first. Love and hate are very close emotions. It takes so much energy to hate someone and anger fades away over time.
So we stopped what we were doing, put our personal lives on hold and became a team again. That was six years ago and they are still on hold!
We made the decision that personal lives had to be secondary and Daniel had to be the focus – plus with three other children, we were way down the pecking order! I believed we could reconcile the marriage given the chance, but for now we live separately and have a regimented routine that works for Daniel.
In the beginning, our parents kept saying things like he’ll be fine, it’s just been a setback and he will catch up but Daniel continued to miss milestones. We had enough experience between us to know something was very wrong. Despite pressure from professionals to send him to a mainstream nursery – where he could “fail” and probably hurt someone, we resisted, battled and managed to get a diagnosis before school age. We then battled against sending him to a mainstream school where everyone would be unsafe (especially him) and got him a place at special school for reception. Daniel has to be watched 24/7. He has no concept of risk whatsoever, and when you combine this with amazing problem solving, lack of fear and above average speed, strength and gross motor skills, you have a severe flight risk on your hands!
The thing I’d like to stress is that a lot of pressure was put on us to send him to that mainstream nursery. Every professional knew he wouldn’t cope, we as parents would be getting called in, he’d probably hurt someone or more likely himself – but that is how the process works. At every level for children with any additional need – they have to fail first. It’s not enough for the parent coming to terms with their child’s differences and grieving the child they aren’t going to have, that they have to be the parent of the weird kid or the aggressive kid or the stupid kid as well. We were lucky because I already know this is how the system works and we were gonna fight tooth and nail to make sure this really hard situation wasn’t made any harder.
It angers me when many parents who don’t know this get fobbed off and told that they have to follow the procedures whilst they struggle and the child’s development is further harmed while cheaper options are tried.
We’d always worked with services and managed his needs well. Despite being offered it on a number of occasions, we held off on family support and having a social worker. Part of my job involves training others in positive handling and I trained Eve so we could manage Daniel’s meltdowns and aggression pretty well by ourselves. But then he got ill.
Daniel is prone to ear infections and he got a bad one. It resulted in five days of non-stop self-harm. When Daniel feels pain located in his head, he will head butt anyone and anything to try to relieve it. I hate having to hold a child in crisis at any time, but nothing is quite as bad as restraining your own child who is already in pain and trying to hurt themselves more. After a relentless five days, Daniel fell asleep and Eve took the opportunity to nip in the shower. Unfortunately he woke up and found the hardest floor in the house to head-butt – and did so as hard as he could.
We went to the hospital. Daniel had fractured his skull. This was a turning point for us and we got a disability social worker which led us to a helmet, specialist wheelchair etc. but most importantly, someone else to help fight Daniel’s battles so it didn’t always fall to us.
The watching 24/7, the aggression, the self harm, the looks in the street, the constant appointments, the inability to get anyone to look after your child are all challenging to say the least. But the biggest barrier to a normal life is the sleep deprivation. There is good reason it is a torture technique. A lot of people who read this will have children. They will have had newborn sleepless nights for periods and remember how they felt. Daniel sleeps on average for three hours a night. He also won’t wake us up with gentle cooing either. Eve has to sleep in the living room of her house for fear of him getting up and falling downstairs. Sometimes it’s a “friendly” kick to the head to wake us up, other times, a head butt!
These days, Eve tries to let me sleep as much as possible to allow me to cope with work. But this means that she has to try and slot sleep in where she can – which would be easy during the school day – if it wasn’t for the non stop appointments with different professionals. Often, she will call me to come over at about 4 or 5 o’clock in the morning to give her an hour before getting kids ready for school and I leave for work. After work, I will get Daniel chips (the only thing he will currently eat) go straight to hers, send her up to bed and make tea for everyone else. I’ll get her back down for tea and to be Dads taxi for the others if needed and then send her back up while I try to get Daniel to sleep after his bath, which on average I manage at about ten o’clock. Then I go home and go bed myself.
This is our survival routine.
Trying for a normal life
We initially tried to go out one night a week. One of our teenagers is responsible enough to look after him and the other is strong enough to manage him if he were to become distressed or needed to be stopped from doing something, but we wouldn’t have sat down before the ‘when are you coming back texts’ begin, and that coupled with the fact we were both constantly knackered made it pointless. Both sets of grandparents try to help but can’t physically manage him and don’t fancy a sleepless night. Years ago, we tried to attend a few special occasions together like birthdays etc. but we would arrive home just as Daniel was waking up and I would be awake through the onset of my hangover, watching Rocky 4 (its always on somewhere in the middle of the night) while he bounced around like he was the one who’d had half a dozen Vodka Red Bulls!
So now we don’t go out together anymore and we attend special occasions separately. Even if we try to have simple family ventures, they become what feels like military operations! From getting all his stuff together, to hoping it won’t be too crowded or noisy, then dealing with the looks from others when he shrieks or hits himself or needs his helmet on – all culminate in a feeling that unless it’s totally necessary, it just isn’t worth it.
I’ve learned a hell of a lot in the last 7 years but these are my main takeaways:
You have 9 months (or 7 in Daniel’s case) to imagine a future with your child. How clever they will be, how good at sports etc. This future has gone and you have a new reality. Take the time to grieve for this, but then accept the new situation. Move your goals. Perhaps rather than hoping for them to be head of the school council, you may now aim for your child to not take his poo out of his nappy!
I will tell you however, that little things become big things. Every new word that comes is special, every interaction a milestone. We waited 7 years to hear ‘I love you’ and Daniel has no idea what it means but he knows it made mummy happy so he said it. That beats any award in any assembly!
Develop a thick skin
Its human nature to stare when you don’t understand something, and I get that. As uncomfortable and upsetting as it is, it’s part and parcel of being out with a child who is shrieking to prevent the input of their surroundings or is hitting themselves because they are distressed, or is wearing ear defenders or a helmet while sat in a wheelchair.
What is not acceptable is the tutting and the muttering people do under their breath – or even commenting out loud. It has taken everything to make that decision to venture out with that child, expecting the looks is one thing but being openly judged by someone who knows nothing of your life and has been inconvenienced for a minute is the reason parents of children with autism become more and more isolated.
Treats are the first to go. Soft play centres, for example, are too crowded and another child may accidentally get hurt. Trying to explain yourself is exhausting and so are the unrelenting looks throughout any attempts to do something fun.
Shopping is done online, or someone else has to go for you because Tesco has a really high ceiling which makes an echoing sound when you shout – or the lights in TK Maxx make a high pitched sound that only your child can hear and is sent into meltdown.
You stop even attending family stuff because you can’t bear the fact that nobody really wants your child there even though they are too polite to say anything.
These are all waters that need to be negotiated. Eve is incredible at putting the negative commenters in their place – she is brave and goes full momma bear on them. She then gets to the car and cries her eyes out!
Find a support network
Isolation becomes a huge problem. You lose touch with many friends because you simply can’t go out. My best friend of 30 years lives 3 miles away and I see him once a year. I go to work to have adult conversations, and as much as she would love it Eve doesn’t have that. Although she has kept in touch with friends, they don’t understand what she goes through. Finding new friends with similar experiences has been a massive help for her. They never meet face to face but are all likely to be up in the middle of the night and are not phased by anything because it’s their life too. Social media can be a blessing!
The brilliant Brene Brown talks about empathy not sympathy and that is what is needed. When you tell a story of your child smearing sh*t up the wall, you don’t want an ‘oh poor you that must be terrible’, you want a ‘oh yeah I hate it when that happens but at least you didn’t have the neighbor knock on the door coz ……….. is wanking in the window’!
You don’t have to be alone!
Professionals are important, too. We put off getting a social worker for far too long. When you get one, make sure they (and any other professionals involved) understand the needs of your child.
Pick your battles
This is so important to consider with your child, the professionals and the people in the street.
Progress will be slow and you have to focus on a few things at a time and you choose what they are, not others. You will have people – most probably your parents – telling you how you should be doing things, or what your child needs. I’m well aware he should be wearing more clothes and eating a more varied diet but at the moment I’m making sure he doesn’t cave his own head in!
It is a lottery as to whether professionals understand your child. It shouldn’t be, but it is and some are more important than others. If the doctor wants to continue talking to the non-verbal child rather than you then you just have to wait it out, but if CAMHs tell you they don’t think your child has ADHD but then reasons this by describing ADHD perfectly – then that is a time to challenge.
It is a non stop fight. It is exhausting and knowing when to give and when not to is vital. Other people are often the biggest challenge – but often, they aren’t worth the stress!
Find the joy
I don’t think I’ve sugarcoated the fact that it is damned hard! There will be days when you feel like you are drowning and you want to run away. When you’re trying a new medication and your child hasn’t slept for more than 40 straight minutes for 9 weeks, or it’s a full moon and they have been relentlessly destroying the house… and you are just about to fall off a cliff.
Then suddenly, they will sleep through or say a new word or show you affection in a way that melts you. These are the moments that make it OK. This is the tiny light at the end of the tunnel that you need. Cherish it!
Will he talk? I don’t know.
When will he get out of nappies? I have no idea, but I hope it will happen.
Will I ever be able to let him go in a shop? I hope so one day.
These are our big targets and if Daniel achieves them it will be the most joyous of days but in between he will keep giving those little moments.
There is however one overarching thing I have learned riding this roller coaster. My wife is a truly incredible Mum. She fights for him every single day, is patient despite being battered and exhausted and communicates with him in a language that I’m convinced doesn’t even exist. It’s a bond that you have to see to believe and despite everything we have been through Daniel is lucky to have her and so am I.