News - 12th April 2018

A life changing discovery

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Drew Donohoe began running Shanganagh parkrun just over a year ago. He is 15 years old and was diagnosed with autism at the age of five. Only then did he begin to speak a few words.

 

Drew found it very difficult to cope with everyday living that most of us take for granted. Then, eventually, he found his passion: running.

 

Drew’s early years were a struggle for him. From the day he was born until he was just about four, he woke up at least 20 times a night (I mean every night) crying and screaming. A good night’s sleep for us was when he woke 10 times. He couldn’t tell us what was wrong because he couldn’t speak any words. We were exhausted, always on autopilot.

 

I will never forget the first night he slept until 6am – it was the night before he had to get grommets. Most of the time he wouldn’t respond when we called his name so the first thing was to rule out a hearing problem. I woke up at 4am thinking there was something wrong and actually had to check if he was still breathing! That was the very first time he slept a full night since the day he was born.

 

The grommets made no difference. We were then placed on the waiting list for him to be assessed, which was another two years. No school would take him as either “his screaming would scare kids” or they “didn’t have the facilities to care for him”.

 

We couldn’t wait any longer for a diagnosis, so we went privately to a professor who diagnosed him there and then with autism and a learning difficulty. It took a while to find a special school that was willing to take him on as his screaming put a lot of them off. That was very hard to digest but thankfully someone was on our side and gave him the chance he thoroughly deserved.

 

Drew would listen to music or watch videos repetitively while tearing magazines to shreds and piling them on the bed. While doing this, even though he couldn’t speak, he would write down numbers on a blank page, in order from one into the thousands, while rocking side to side. He would hate anyone distracting him. This would be his usual happy place. He also lined up his toys and would get extremely upset if anyone moved them.

 

His two older brothers walked on eggshells around him. It was very sad to see, as Drew, although he couldn’t speak words, had a murderous high pitched scream that could shatter glass if anyone dared to interact or disturb him.

 

Drew needed full-time care and had to be watched very closely as he had no sense of danger, for example, and therefore it was exhausting and tough-going trying to give his brothers equal amounts of attention. We missed out on family days out together as Drew couldn’t cope with crowds, noise or different surroundings. Even stopping to speak to someone would set him off.

 

I remember bringing him to an appointment with the local health nurse for an assessment and while in the waiting room, he was looking at all the children’s books on a little table when another child went over to take a book and Drew screamed the place down. The looks I got from other parents were very hurtful; you could see they were thinking he was a spoiled child, and the stares happened no matter where I’d bring him. He had a total meltdown and I had to carry him out to the car and bring him home. As I struggled to carry him, he (not purposely) ripped the chain off my neck as he stiffened in my arms. I just cried the whole way home. It hurt me so much to think that this was going to be his quality of life forever as I didn’t know much about autism at the time.

 

Myself or my husband would take turns to bring his brothers out and about. Any family occasions were a no go, so either myself or my husband would have to stay at home with him. We could only dream of going to the cinema or a restaurant as a family – it was those little things that we really missed. He was very attached to myself and my husband and if I was to go to play hockey or he to play football, one of us would need to distract Drew while the other would sneak out, as he would scream and sob for hours if he saw us leave.

 

Drew only ate porridge for breakfast, spaghetti for lunch and spaghetti bolognaise or cheesy pasta for dinner and plain milk chocolate as a treat. That diet remained the same until the last year or so. I tried over and over again with different food, but he would gag. Even hiding vegetables in his bolognaise didn’t work! He smelled everything he ate, and he just knew.

 

Thankfully, he came on leaps and bounds in his new school, began putting a few words together, finding routines that worked for him and so on. After four years in a special needs school it was time to move on as he had progressed so well, it would have only set him back had he stayed. He moved to a mainstream primary school where they had just set up a new autistic class. He thrived and his independence grew and grew, so much so, that he began cycling to school or getting the bus by himself. At 14 he joined a mainstream secondary school where he has a full-time Special Needs Assistant.

 

There is a local 5k fun run that happens once a year in our local park, and Drew’s brother was a member of Cabinteely Athletics Club so he always took part. A couple of years ago Drew mentioned that he would like to try it, which he did. Just after running it, he would already be talking about next year’s fun run and how he wanted to get a good time. He told us that he would love to do more fun runs and was sad that it was only once a year.

 

That’s when I googled 5k runs in our area and came across parkrun. Drew couldn’t believe they were on every Saturday morning just up the road from us. He couldn’t take the smile off his face and asked when he could go, although it clashed with his Special Olympics training.

 

Drew’s first parkrun was in Shanganagh. He was very nervous as he thought he might get lost or not know the course. I think he was taken aback when he saw the crowds too. He managed to run it fine but always seemed disappointed on the way home and quite anxious. Disappointed because he felt he should have run it quicker and also he felt nervous running among a big crowd. We think he felt it was sort of a race and was not so happy finishing in 30th-40th place.

 

We reassured Drew that the main thing was to enjoy parkrun, but he was still getting anxious if he wasn’t beating his time from the previous week, so when we told him all that worrying was using up vital energy he could use for a better run, he seemed to take it on board, slowly but surely. He is now a much more confident runner, he knows it’s only a race against his own PB and that’s his aim every week. He doesn’t mind the crowds now either, in fact, he looks at them as an inspiration, and often talks about wanting to be as fast as the faster runners there some day!

 

Drew’s dad and brother will run with him when they don’t have a football match on that day, and I am the videographer every Saturday morning. He asks me to record him then watches them over and over again every day.

 

parkrun has been so beneficial to Drew in many ways. He has finally found something he believes he is good at, which has helped build his confidence. He always used to believe he was a failure, especially compared to his peers. That he wasn’t good at anything. He now has sense of self-worth. He wears a smile every day, especially when he talks about his parkruns, which is numerous times a day! His eating habits have had a complete turnaround. He will eat most things put on his plate if it makes him fitter, healthier and faster to beat his PB. This is a huge step for someone with autism as they don’t like change.

 

Drew’s independence has increased, so much so that he is now confident enough to go for a run by himself or do a workout of his own accord. It has had such a positive impact on him and our family as he no longer focuses on the negative side of things, therefore he is a lot happier in himself which makes us happy. Now, at 15, he is the most caring, polite, lovable young man you could meet. We believe that ever since he discovered his passion for running that he has been the happiest he has ever been.

 

Secondary school was a very tough transition for him too and I know for a fact that parkrun has made him less worried about it, as he has another focus. His favourite thing about parkrun is getting timed and being able to see how much quicker and fitter he is getting every week.

 

He took part in his first Cabinteely parkrun last Saturday and found it a lot tougher but loved the course. He said he really enjoyed it and wants to do it again as he feels the hills will build his stamina. He is also asking about trying out other parkruns further away.

 

I would like to thank all parkrunners for your contribution. Without probably knowing it, you have made our son a lot happier and healthier now that he has something to look forward to every week.

 

Debbie Donohoe

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