Mumsnet have launched an awareness raising campaign called ‘This is my child.’ The aim is to support parents of children with additional needs, inform everyone else, and open up a conversation about how we can all act to make life easier for everyone caring for children with additional needs. You can read more about it here http://www.mumsnet.com/campaigns/this-is-my-child My post below is to support the ‘This is my child’ campaign.
I’ve often wondered how people see Freddie. Doctors have often commented that Freddie has dysmorphic features, some thing that always infuriated me. Surely my gorgeous boy doesn’t look so bad that he has to have this written all over his hospital notes and discussed at constant hospital appointments. This has always left me wondering how other people view him. Our family, friends and people who we walk past in the street. Do they view Freddie as I do? We’ve had a few times lately where people have been staring at Freddie in public and this seems to be happening alot more frequently now, I always try to tell myself that they are probably staring as hes so damn cute. They are probably admiring his curly hair and his cheeky grin. But today something happened that left me wondering if this is really the case. Are they really staring because Freddie looks cute or because he looks different. Today a small child made a comment about Freddie. He whispered to his friend that Freddie looks weird. A comment that absolutely broke my heart. The comment to me has made the new mumsnet campaign ‘This is my child’ even more important. The more people are educated about children and adults with additional needs the less hurtful things will be said. Freddie may look different to some people but that doesn’t mean he deserves to be stared at or whispered about.
He is my child and people need to learn that despite the way Freddie acts or looks he is still a person. And he deserves as much respect as anyone else. He faces daily battles to even do the simplest of tasks, as a family we have over come huge hurdles to keep Freddie healthy and we face a lifetime of ensuring he stays this way. Stares and comments make our lifes so much harder. If people got to know the real Freddie maybe their opinions on him would change. So i’m hoping that by writing this blog that it will help people realise that child with additional needs have a personality, they have likes and dislikes just like everybody else. They don’t deserve to be stared at or called names. So this is my child, this is Freddie -
Freddie is a 3 year old cheeky little boy. He has an amazing mop of curly hair and a smile that could melt even the coldest of hearts. He is unable to speak but definitely understands some words. If you say the word ‘cuddle’ to him his eyes light up and he comes bum shuffling over to you and waits for you to pick him up for his cuddle. Freddie may be unable to walk but he certainly doesn’t let that stop him exploring. He could probably win awards for being the worlds fastest bum shuffler.
If you want to see Freddie smile the best thing to do is give him a tickle. A good hard tickle on his tummy and ribs is sure to get a good laugh from him.
Sometimes Freddie can get a bit bored and just like any other child likes to get out of the house. He enjoys nothing more than being put in his pushchair and being taken for a walk. He chuckles when the wind blows in his face and loves it when he gets wet in the rain.
Freddie absolutely adores having a shower. He sits in his chair under a stream of water and smiles the whole time.
You may have noticed that Freddie wears a particular cool pair of glasses. He needs the glasses for health reasons but he knows he looks amazingly cute in them and grins everytime I put them on him. But he also loves to pull them off his head and throw them on the floor.
Freddie has an older sister who he loves so much. They have an amazing relationship and he always smiles when Evie is around . Evie is the one person who can always get a good laugh out of Freddie and cheer him up.
Freddie is such a fun loving little boy but as well as having lots of likes he also has alot of things he dislikes, and hes very good at letting you know when hes cross with you!
Freddie hates loud, sudden noises. They make him very upset and cause lots of tears so we try to keep things as quiet as we can in our house to keep him happy.
Another of Freddie’s dislikes is being examined by his doctors. He has alot of hospital appointments and has a good shout at all his doctors when they start prodding and poking at him. He particularly hates having his eyes checked.
Freddie can get very upset when you walk past him. We are not quite sure why yet, we suspect it may go hand in hand with his eye problems. We have to walk past him very slowly so we don’t make him cry.
Freddie doesn’t have a very good relationship with food and meal times can bring alot of tears. We try very hard to feed Freddie 3 meals a day so we don’t have to rely on his gastrostomy tube but somedays Freddie can have a good tantrum if we try to offer him food.
I think Freddie’s biggest dislike is going to bed. We spend many hours in our house settling Freddie at bedtime. He tries to charm his way out of bed by flashing us his best smile everytime we try to resettle him, and i must admit he does sometimes win and ends up back downstairs. I think he must have to much fun in the day that he just doesn’t want it to end.