Autism, brain injury, SEN parenting

Day surgery for my ASD child – trauma, guilt and stinky doctors

My DS is zooming up and down the hallway singing the Star Wars theme tune joyfully. I ask him how he’s feeling and he says “great” and “holy mackerel I’ve got BB8” (a game character he’s very pleased with). I’m so happy that he’s back to his sunny funny ways because just 4 hours ago it was a different story entirely.

He had to go for day surgery to have a tooth removed (in the end they took 3, while they were there..) It was to be his second experience with a general anaesthetic, the first time had been very traumatic for him so I’d tried to organise things differently this time. We’d been promised a play therapist or specialist learning disability nurse to be an advocate for him and help him with coping strategies, to be first on the surgery list so it would be over sooner, a pre-med and skilled anaesthetist to insert cannula without him being aware.

None of the above happened. In actual fact, he was last on the list, received no special measures whatsoever, was given no time for pre-meds x 2 to take effect before being pinned down and gassed with mask held over his face until he went under kicking and screaming in terror “no” and “please don’t!”

I have to say that it goes against every bone in my body to allow that to happen to my boy. He trusts me to protect him and he was so damn frightened in that moment I just wanted to grab him and run.

There is nothing stoic about the way I feel today about his autism and his brain injury and the fact that it makes him so anxious, and demand avoidant (unwilling to comply with anything he’s not sure about.) Most children, my youngest included, will accept a cannula needle in their arm with but a few tears and squirms and can then be anaesthetised gently and kindly. Today I sobbed for his trauma, at his terrified pleas for them to stop and for all the future occasions when, as an adult with special needs, he will again have to be held down and sedated in order to receive any treatment.

When they led me from the room where he lay finally with no fight left in him, they told me to go and get a coffee, that they would come and find me. Coffee?! Are you crazy?! You have my boy in there, held down against his will and at your mercy. I’m going nowhere sister until you come and get me and return me to his bedside.

And as I knew he would, he awoke from the anaesthetic in an absolutely petrified and traumatised state that continued for hours. He cried hard and loud. Kicked, punched, and used the F word for the 1st time in his life. Repeatedly.

Screamed that he was going to kill the doctors. The stupid doctors, he would kill them all. When given a toy he threw it back hard in the nurse’s face. Piles of cloths for his bleeding mouth were ripped to shreds. I tried so desperately and in vain to comfort him, held him tightly, didn’t flinch at the punches. He repeatedly hit the porters and nursing staff too, as well as me and his support worker. This is not normal behaviour for him. He was just inconsolable.

All medical observations were refused. All day long he remained absolutely convinced that they were coming to get him with the blood pressure monitor, that he would be squeezed and hurt. The nurses could not (and did not want to) get anywhere near my boy.

Post surgery, we were eventually wheeled to a private room after being on display in a ward of eight beds for all to gape and stare at (and stare they flipping well did of course). Seven other families with children who had had their operations calmly (and hours before DS). All eyes upon my traumatised boy and no word or even look of comfort or empathy, just rude and gormless staring and sneering, watching ‘the show’. I wish to God that they could walk a mile in my son’s shoes, to know the terror that he was feeling right there and then and to understand and respect his need for acceptance, empathy, privacy.

And when it was over, it was over. He got it out of his system, the pre-med sedation finally kicked in and wore off and he had some pain relief. They gave him a trauma teddy bear and a Batman sticker and discharged us quicker than you can say Jack Robinson.

And here he is a few hours later, obsessing over his new Xbox game and tormenting his brother. And here I am, with another groove of guilty conscious that I will forever carry. I let them hold him down with a mask over his face. Again. (It happened the same way the first time he was anaesthetised when he was 5 years old.)

Is there a stoical way of letting this be ok?

It’s hard, it’s really hard to see your child so frightened. I don’t think it is ok really and I don’t know what the answer is. Sometimes in this world, we all have to do things we don’t want to, things that worry or disturb us but that will ultimately be in our best interests.

It’s what I try to tell him but he’s not interested. He’s sticking with “I won’t do it” and “those stinky doctors”. Well to be honest after today, I can’t help agreeing with him there!!

Autism, SEN parenting

The Thomas Centre – ‘no apology’ holidays for families affected by Autism and related conditions.

The Lincolnshire coast

It’s summer holiday time and we are at the wonderful Thomas Centre in Lincolnshire. It’s our 3rd holiday here and it’s truly a relief to be back! The boys love it – they are happy, safe and parted from their devices as there is so much to keep them busy.

The huge 80m play barn has soft play, giant chess and skittles, table tennis, air hockey, a pool table and lots more. Outside there is space to run around, 25 acres in fact!

The children are enjoying hide and seek in the grounds and woods surrounding the accommodation. There are fun outdoor play areas for young and old alike, a football pitch, basketball hoop, huge sunken trampoline and a go kart track with enough karts for the whole family to race around! Even my four year old can reach the go kart pedals this year.

Skittles in the play barn!

The swimming pool is just the right size for families to enjoy their private hour slot daily. My boys love splashing around and making as much noise as possible and there are no worries about who we are splashing or upsetting / deafening!

The best thing about the Thomas Centre and the real reason we are here is that nobody bats an eyelid at DS’s noises and behaviours. The Thomas Centre is a specialist holiday centre for families affected by autism and related conditions. It’s a truly non-judgemental environment. The owners Richard and Jan and the other families staying here, all know how hard a ‘mainstream’ holiday can be.

When people stop and stare everywhere you go, when the public just don’t understand the noises, tics, meltdowns and unusual behaviours that can result from the need to self regulate in stressful, busy environments. When you just want to relax as a family without feeling exposed and judged, swimming constantly in a goldfish bowl.

Like so many special needs parents, I hear myself saying sorry again and again every time we leave the house. To all the people who my son collides with, leans into, or offends with his noises and phrases. I steer him past the people and I say sorry. There is absolutely no need for apologies here. In fact ‘no apologies’ is a rule at the Thomas Centre. We are having an apology-free holiday and it’s an incredible relief.

My son beats his fists hard on his chest when he is stressed and makes loud, unusual and repetitive noises. This makes people stop to stare, tut or sometimes laugh mockingly. The Thomas Centre is our haven – because here no one is laughing at him.

Other families are similarly affected and we are all feeling a huge relief to be in such a safe space and to be surrounded by the safety of others who know.

Yesterday we ventured out briefly to a nearby seaside resort. It was too ‘peopley’ for my DS as we tried to buy some supplies on the high street and his noises and stims were heightened. People stared and tutted as usual and one woman took particular offence to us standing in the bakers shop as DS was rocking and leaning into people unable to stand still. We were all very relieved to be back safely at the Thomas Centre and back in our PJs!

Holidays here have been designed with the whole family in mind. After all, we all really need a break from time to time. ASD children and their siblings can relax and play contentedly as their parents are able to switch off and know that all the children are safe and happy.

The holiday properties here are beautifully designed and no expense has been spared. Luxurious furnishings, huge comfortable squishy sofas, large dining tables for families to gather to eat and play, spacious comfortable bedrooms and high quality bathrooms and wet rooms with deep tubs for soaking the cares away.

While the kids are bouncing and racing around with their walkie talkies, we adults are reading, watching films, wearing face packs, soaking up the glorious open aspect countryside views and listening to the blissful sounds of happy, relaxed children playing and being themselves. I wouldn’t have it any other way – happy holidays!