Huge thanks to Jed Kahn from Avanade, for dad for sharing his story and experience so openly.
I don’t need an alarm clock. My son takes care of me being up early every morning at 6am like clockwork. “DADADADADADADADAD” I hear him chime into his monitor. It’s like he knows I’m up and watching him. Fact is, I am as it’s become a natural routine for me to grab my phone and check in on him via the monitor app as soon as I awake, and yep there he is stood up at the end of his bed looking at me. At least he slept well last night, wish I could say the same. I have to check in on him every night as my son can sometimes struggle to breath properly in his sleep, especially when he’s ill, and I have to intervene with his inhaler and lift him upright so he can breathe better.
Mornings are regimented and have to be to keep us both sane, without the routine we’d melt down. This is standard for people who are on the autism spectrum disorder (ASD), routine and process to ensure our days run to time.
However, I wish it was as easy as this. Some days can be a real challenge for us both. I’m autistic, ADHD and dyslexic with BPD, and follow certain ways, or maybe I’m set in my ways, and likewise my four-year-old, soon to be five, is yet to find what works for him. He’s on the Child and Adolescent Mental Health Services (CAMHS) waiting list for as assessment for ASD and ADHD, but clearly showing many signs, therefore, mornings can be met with either happiness or a banshee screaming at me, the later triggering me to take deep breaths whilst looking out of his bedroom window across the garden. He can’t help it and is only trying to be understood, as he’s non-verbal and gets so frustrated if anyone doesn’t get what he’s trying to say. Flip side of this is that when he’s understood he’s so happy and dances around. It’s like playing charades and takes a lot of mental energy to work out what he is trying to communicate.
I help him out of his cot bed, he wants to try and climb over the top himself and with minimal help, if I help too much, his siren goes off. He’s out and now wanting his cuckoo clock activated – CUCKOO CUCKOO it sings for six. Blanky in his hand we head downstairs. He holds onto the banister that has been fitted to support my him walk up and down the stairs. As he reaches the bottom of the stairs, he points at me to go down and leave him to come down alone and successfully he does. My son is hypermobile in multiple joints, and he was born with Club foot (also called talipes). This is where a baby is born with a foot or feet that turn in and under. At 6mths his club foot was surgically corrected by “popping” his Achilles tendon. Just before he hit 3yrs of age he took his first steps and is getting stronger every day. One day maybe he’ll be a strong footballer like Steven Gerrard who too was born with Clubfoot and he went onto captain the England Football Team.
Now the breakfast routine begins. He puts the Gorilla shaped lamps go on, beats his chest, he points to the clock in the living room and makes a tik tok noise. Into the dining room and over to his toy chest to pick out his fidget pop-its that he places onto the dining room table and then we walk into the kitchen to select his breakfast. I play the same surah (verse in English) from the Quran every morning via my smart device in the kitchen, make his packed lunch and then we sit down together for the next 30 minutes. Trying to get my son to eat is the other challenge due to sensory needs and his hyperactivity – he simply can’t sit still and is picky with food. This has been an ongoing problem, so much that we have a dietitian monitoring his food intake as he’s very small for his age and awaiting genetic testing ranging from growth deficiency to learning disability as he’s 24mths behind mentally and physically.
Time to get ready now and back upstairs we go. He’s only managed a handful of hoops and I have had to make him drink all his milk via a straw, so he gets something into him. Topped up with his multivitamins, asthma pump and meds. It’s the same every morning, even when I try to make a slight change so he can try and get more food in, he simply won’t eat as much as he needs to.
We slowly climb the stairs, he clutches the banister with both hands, and up into the bathroom to get him ready. I have to help my son with everything from this point onwards as he doesn’t really know what to do. Even though he’s going to be 5 years of age soon, he’s functioning like a 2-3 yr old, due to Global Development delay. Another 45 minutes pass and finally he’s washed and dressed to head to nursery school. The time has flown by as its 8.40am and nursery school starts at 9am. Luckily, we’re only a 5min walk away, however, Sher can’t walk far so its either in the pram or in the car depending on weather, its usually the car as were always running late.
Once dropped off at school, I head home, take my cocktail of meds to help regulate me and down a strong black coffee. My workday starts at 9.30am, but before it does, I’m giving the house a quick clean up, trying to remember what I need to get completed for Sher’s medical appointments as he’s under the care of six consultants for different conditions. Every month he has lots of appointments to attend and has been since birth. Of recent it’s been working on his Educational Health Care plan (EHCP) as he’ll be of school age this year. Something that fills us with high anxiety as he’s so slender and small. Will he cope and not get knocked over like a skittle or end up back in hospital again? He’s been in and out of hospital every year.
Its 5.30pm and I’m off to collect my son from his mum. Me and mum separated, and I become my son’s main carer 2yrs ago. Many reasons why, one being the grief and trauma we both went through, and still are, of having a disabled son. Something parents can’t ever prepare for. You always picture the perfect baby and a life of happiness. I would never admit he was disabled or had learning difficulties and that he’d be fine to everyone, “he’s just a boy, they develop slower”, I’d often say. In fact, I was masking him from the world, something that I had to do all my life until I got the help I needed when I joined Avanade. Admitting, is by no way giving up or submitting but was the first step that allowed me and mum to be able to get Sher the right help “WE” needed. Now, I see him as someone that has his own unique way of navigating through life with the help of his family. If anything, I believe he’s functioning at a higher level than most children his age. He can’t speak, but he can be understood by signing and expression. When it comes to technology, he’s already worked out how to use my iPhone properly, down to knowing how to connect to Wi-Fi and Personal Hotspot in the Settings so he can watch YouTube Kids on his iPad.
After dinner, we start to wind down and the night routine kicks in from 6.30pm. Lights get dimmed, TV off, mobile devices away, warm cup of milk, followed by a warm bath as this helps increase the melatonin levels in the brain, the sleep hormone – which also aids a smoother sleep pattern. We snuggle up in the armchair in his bedroom for story time, again this helps aid sleep by hearing a parent’s calming voice. Story over, he slides off my lap, points at his smart device for me to play the same surah from the Quran. I help him climb back into his cot bed, tuck him in, give him a kiss and tell him I love him as I close the bedroom door with all the lights off. He doesn’t want any lights on at all – pitch black and calm. I walk downstairs and keep an eye on his monitor as he drifts off to sleep.
As you can imagine this takes a lot of energy and time to stay on top of. Having the support of Avanade has really helped, if anything, Avanade has helped our lives. The support of my Career Advisor, the teams I work with, the wider EAP support and of course the flexible working hours means I can be there for my son and attend all his appointments as well as manage my own health. It takes away the worry of having to juggle life and work.
My mentor gave me great advise – you’re juggling all these balls, the ones you can never drop are your health and family, the other balls can always bounce back. Through all this support my work life is more productive and I’m delivering results. My personal life, as a family we are getting better, healthier, stronger – mentally and physically as each day goes by. There’s always challenges but knowing Avanade is there for me keeps me strong.
Thank you, Avanade.