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They say “how can you be a carer, you are just being a parent”

When I tell people I am my son’s carer, they often look confused and think there is no difference or think I am being overly dramatic or I am trying to swindle money from DWP. And to fair to them, until I had to become a carer I would have been confused myself. 

In the summer of 2016 my wife and I were blessed with beautiful twin boys; who are our pride and joy. Just before their first birthday we noticed a development difference between them and also between their age group peers at the weekly baby group activities. While we appreciated that children develop at different speeds as parents we knew the difference was significant. We pushed and pushed and pushed  to get our boy assessed through CAMHS. Following a two year process we finally got an assessment of autism and learning difficulties. So this means our little superstar has additional care needs that go way beyond what his twin brother needs. 

For example, he is pre-verbal and is unable to talk; which means he can’t ask for something or tell us if he is hungry, he is in pain or feeling unwell. He is unable to feed himself effectively and needs assistance and he is also incontinent and needs to wear nappies. He is a sensory seeker and explores the world through touch and putting things in his mouth; so anything he can reach he will try to put in his mouth; which of course means we have to be super vigilant for toxins and choking hazards. And you wouldn’t believe how many of these are around in everyday places. As someone with autism he does not respond to requests or even answer or respond to his name. 

He does have super powers though! He is incredibly strong, much much stronger than a child of his age. Which makes it a challenge to put him in his car seat or to try to change his nappy if he doesn’t want to. He is also a brilliant climber, and when I say brilliant, I mean on the same level as Spider-Man! Which means if we are anywhere he will be on top of shelves, a shop counter, or a cupboard.. quicker than lightening.  He also has literally no fear. If he is high up he will try to jump. If he is walking and sees something he wants to see he will sprint to it; it doesn’t matter if it’s across a busy road or across a different hazard. He will also drop without warning  to the floor, road or pavement if he sees something there. 

Thus this means, he needs constant supervision, as in, he needs to be no further than arms length all of the time to avoid him harming himself through curiosity. 

His other super power is his energy. He is always on the go. He has never slept through and every night he is up wanting to run around the house between the hours of 11:30pm – 4:30am. Which of course means his mother and I need to be awake with him to protect him from harm. So we have also not slept through the night, for the past five and half years. 

Despite his special needs we try to have as much fun as we can and do as many family things as we can such as swimming, trampolining, soft play and theme parks. Of course somethings that families take for granted such as cafes, restaurants, cinema and travel for holidays are impossible for us. But we try to have as much fun as possible. 

So being a parent is what I do for both boys. And being a carer is what I do for my little superstar to ensure he is safe and healthy based upon his special needs. I am not his carer because of money; I do not claim any money or any form of privileges. I am certainly not being melodramatic when I tell people I am a carer aa he has additional needs. I am his carer as he needs a carer in life and in many situations he legally needs a carer with him for safety reasons. Like all carers I am proud of what I do and I do it out of love. Being with him and helping him is exhausting and never ending. But being with him and helping him and (his brother) is the best thing ever. The pleasure I get when I see him smile or laugh and know he is happy is immeasurable. As he is autistic and unable to speak communication is very difficult; but he has taught me the most important lesson in life… that love needs no words. 

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