I have seen Despicable Me, Winnie the Pooh, Cars, Cars 2, Toy Story 3 and Shaun the Sheep A LOT! I mean a lot. Each film has been on repeat in my house for 3 months at a time all day, every day and all night sometimes. When I am camped out downstairs with the DVD player helping me keep Thurston company in the small hours, the storylines and songs subconsciously slip into my memory. I could recite Despicable Me to you word for word if you like….”we are going to steal ze moon”. I won’t though!
The hardest aspect of Autism for me personally, is the sleep disorders that can come with it. Unfortunately, Thurston has a fairly extreme sleep disorder. I already had 2 kids when I had Thurston, so I was used to a certain amount of sleep deprivation with a newborn, a teething baby or a toddler having nightmares. All of that is completely bearable and understandable. You get grumpy, drink more coffee, people feel sorry for you and ask how you are. Ultimately, you do end up looking back on it fondly in a way, because losing sleep is part & parcel of having a baby. It’s almost part of the fun, you compare sleeping patterns with other mums, share tips (not that I’ve got any, I reckon a lot of it is just jammy luck!), discuss which under-eye concealers work best and usually by age 3, you’re back to normal, sleeping in your own bed all night with your man and wondering whether you should go through it all over again!!
Obviously when Thurston was a baby, he didn’t sleep. Apart from general waking for a feed, he also suffers from Gastro Oesophageal Reflux and so couldn’t lay on his back. He either slept on our chests while we tried to sleep sitting up propped by pillows, or in a vibrating bouncy chair. Not exactly ideal but we didn’t mind, because we assumed that he was a difficult baby and we would have to endure another couple of years of poor sleep and then it would get back to normal. Erm, no! The reflux got worse and worse. Thurston was even gagging on his own saliva and wasn’t safe to sleep in a room without us since the Speech Therapist had said “there is an unacceptable risk of gagging or choking”. We squeezed the cot into our bedroom but it became exhausting dragging ourselves to the end of the bed every half hour and changing all the vomitty bed sheets. I actually started to be frightened of going to bed! By 8 months old, Thurston was sleeping in the bed with us so he could be propped up on our pillows. We had a stash of towels and muslin cloths by the side of our bed. Now don’t judge me, but when your child is vomiting in your bed up to 10 times a night, it revoltingly becomes acceptable to simply wipe his face, stick a towel over the bed sheet and pass out while he has 20 minutes sleep from the relief of finally throwing up!!
The worst night we had with Thurston during this time was the night before Zeke’s 3rd birthday. We had cleared up so much refluxy sick that we had run out of towels and bedsheets and had no option but to just get up for the day at 3am and let Thurston sleep in his bouncy chair (hardly ideal at 14 months old). Naturally, in the birthday excitement, Zeke got up for his Mr Men themed birthday just before 6am and we managed through our slightly hysterical sleep deprivation to enjoy him opening all his Mr Men toys and books before Alex went off to work. By the time my mum and sister came to wish him Happy Birthday, I couldn’t take it anymore. My eyes were hot and Thurston was just flopping over on the floor. I left my sister to babysit and took him to the GP. He prescribed infant Gaviscon (on top of his normal reflux meds Ranitidine and Domperidone) and some Phenergan to allow him to sleep while the reflux was at its worst. I initially felt very relieved that we were going to get some sleep that night but still had to get through the rest of Zeke’s birthday before we could make it to the finish line! We actually had a brilliant time, our friends came with us and we had a blast, but Thurston wasn’t right. He was clingy and miserable and desperate to sleep. It was nothing like having a 14 month old, I felt like I had a gigantic newborn.
(me and T in Chiquitos for Zeke’s birthday)
That night and for the week the Phenergan lasted, Thurston slept. Disappointingly, Phenergan can only be used short term. Damn.
Thurston’s sleep pattern did change. We found a combination of Reflux medicine that worked for him and he stopped wretching and vomitting in the night. We moved his cot into the children’s bedroom and he started to sleep for longer stretches. Amazing! It was just around this point that Thurston began fighting sleep. I don’t mean in the usual whingy, overtired toddler way, I mean proper, full-on fisticuffs!! Every night, I would give him his medicine and a bottle of formula on my lap and just when he was about to drift off, he would freak out and start smashing my face in. I have had black eyes, bruises, scratches, split lips, nose bleeds, earrings yanked out. It was very sad, he was so terrified of going to sleep, of the unknown, that he would do anything to stay awake which meant lashing out at me. During the daytimes, he was really suffering. Laying on the floor for hours and hours stroking the label on his favourite pillow. He was constantly ill with ear infections, tonsilitus, viruses etc. We were exhausted.
When he was diagnosed with Autism aged 20 months, he was placed under the care of a Development Paediatrician. She offered us Melatonin to help him sleep. Melatonin is a naturally occuring hormone which helps us all to sleep. To break through the cycle of fear that Thurston was stuck in, he needed a top up of Melatonin on prescription. The 1st time we gave it to him, he had his medicine, formula and cuddles like usual, then drifted off to sleep after 20 minutes. Peacefully. No fighting. To me, Melatonin is a magical, fairy-dust, miraculous, invalualuable wonder-drug. It’s the holy grail. It is puzzlingly controversial. We have to get the prescription from his Consultant, as GPs are not allowed to prescribe it. I had to sign a form at the pharmacy to state that I understood it wasn’t licensed for children of Thurston’s age. For something that is naturally occurring in all of our bodies, I do not understand the controversy that surrounds precribing Melatonin to children with sleep disorders. I can only assume that the worry is that every sleep deprived parent would start to drug their child to sleep. I wouldn’t like to be that cynical. I hope that parents are intelligent enough to see the difference between a teething baby and a toddler who is so terrified of sleeping that they are making themselves unwell. Perhaps I am naïve.
I wish I could say that Melatonin spelled the end of Thurston’s sleeping troubles. However, Melatonin can only help children ‘get’ to sleep, not ‘stay’ asleep. As soon as Thurston settled into his new pattern of gently falling asleep with his medicine, he began waking up at never-before-seen, lonely hours of the night and assuming it to be the start of the new day. Sometimes it would be 4am (ouch), sometimes 5am (not too bad), sometimes 2am (soul destroying) and sometimes as soon as my head hits the pillow at 11pm (HELP ME!!). My friends always tell me I look too fresh-faced for not having any sleep. I’m not being big headed, they really do say that, but I think that I am always happy and grateful that something has helped my tiny son to get over his fear of going to sleep. My face is fresh because it’s not being battered every evening. Instead of being scratched and slapped for hours, I get half an hour every night to cuddle my son, stroke his hair and watch him drift off to sleep happily. It’s the best time of day.
Nowadays, Thurston’s sleep comes and goes in phases which I am OK with. The bad phases still sound pretty bad to anyone that values their sleep, but I am used to my little routine of making a little bed in the lounge and watching Despicable Me from 2am until the other children get up. Sometimes I get to go back to bed and sometimes I don’t, but it really doesn’t matter any more. He is happy, content and smiling when he goes to sleep and when he wakes up. How can I be annoyed with that? I might need a bit of extra coffee to get me going and I might have bags under my eyes every day for years to come but that’s why Benefit created Some Kinda Gorgeous foundation. So not only am I grateful to Melatonin, but I am also grateful to Benefit!
Thanks for reading, don’t let the bed bugs bite! Hanj x