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.
So this is Freddie. This is my child. No more or no less than any other child.
Dear Social Services
Do you know how hard I found it to pick up the phone and ring your team asking for help with my disabled son? Do you know how guilty I felt calling you to arrange a ‘child in need assessment’ on my child because i’m not coping with him anymore? Do you know how desperate I am for you to help my family? It wasn’t a decision I took lightly. Let me explain why things are so hard so maybe you’ll understand that me and my husband aren’t just bad parents but in desperate need of help with our difficult situation.
You see, our son Freddie is severely disabled. He relies on me and my husband 24/7 for his care needs. We have become his legs as he cannot walk, his voice as he cannot speak and his hands as he cannot use them properly, We are his comforter when his sensory issues take over and his advocate at his hospital appointments. We are his nurse who deals with his medicines and gastrostomy, we are his therapist and his teacher.
Caring for Freddie is hard work. Harder than alot of people imagine. I’m sure when you came into my house to do Freddie’s assessment and he flashed his wicked smile at you and sat cuddling me quietly that you thought life wasn’t so hard for us. But have you really thought about the impact caring 24/7 can have on a family? Did you consider this when you closed our case and said there wasn’t much you could do for us?
As well as having Freddie we also have a 4 year old daughter. She often gets overlooked due to Freddie’s care needs. She gets told to “wait while I deal with Freddie” “I can’t do that right now i’m sorting Freddie out” “No we can’t go out we have too much to do with Freddie” “No we can’t do that to day we have a hospital appointment with Freddie” Her needs have to be put 2nd behind Freddie’s. We try our best to give her a happy childhood, but sometimes, when she is constantly told that she cannot do what she would like as her brothers needs are greater it can be hard on her. This is one of the reasons we have become so desperate for you to help us. We want time to spend with our daughter away from all the caring associated with Freddie. So that when we go to a restaurant we don’t have to tell her to eat as quickly as she can as Freddie is screaming or so we don’t have to make her leave our day trip early as Freddie has had enough. We want to be able to take her out as a two parent family rather than one parent staying at home to care for Freddie. Surely our daughter deserves to have this?
As well as wanting a break for my daughter I also want it for myself. 3 years of 24/7 caring can take it’s toll. My back is begin to hurt from all the lifting and my stress levels have become so bad I’ve had to visit the doctor. I fear that if I continue with no break then I will struggle to care for Freddie properly. Surely you want to intervene and offer respite before it gets to this point?
As you know we have just relocated to a beautiful part of the UK with beaches right on our doorstep. We were so excited to spend hot, summer days lounging on the beach while the children could play but this has not been the case. Freddie and beaches just don’t mix. As Freddie dribbles so much the sand sticks to him like glue so he ends up covered in it. Which would be fine if he didn’t constantly have his hands in mouth or keep rubbing his eyes. After 10 minutes of scrapping handfuls of sand from his mouth and trying to hold Freddie still while we got sand out of his eyes we decided to leave. But it’s not just the beaches that have become inaccessible to us. Alot of day trips in Cornwall are hard to do as access is limited due to the nature of the landscape. On several occasions we have arrived at our location only to have to turn back home as there are too many steps for us to get down with Freddie. But it’s not just access that ruins our daytrips it’s also Freddie’s behaviour. Firstly Freddie hates being in the car. He will scream for hours and hours on a car journeys so we are tired and stressed before we have even arrived at our destination. Secondly Freddie doesn’t tolerate being out of the house for long periods of time. He gets fed up and starts screaming, so most of family days out that we planned get cut short. And thirdly the amount of planning that has to go into taking Freddie on a trip somewhere is huge. We have to ensure we have the right food for him, enough of his prescription milk, we have to make sure we have medicines, nappys, plenty of bibs and changes of clothes. It’s tiring just get ready for a day out before we have even left the house. So we have now cut down on the amount of days out we have. We have started to spend more and more time at home. Is this really fair on us as a family? That we have to become house bound. If you offered as some respite it would enable us to enjoy a day out with Evie while Freddie could enjoy some 1:1 with a carer.
Perhaps you think i’m selfish for wanting a break. Do you see me as a bad mother for wanting some time out from my son? Is it too much to ask to have a few hours to eat a meal while its hot or to take a bath in peace? Is wanting taking my daughter out for the day with my husband wrong of me? Am I asking for too much to have a few hours of respite once a week so I can go out and enjoy myself? Do you know how guilty I feel when I put my son to bed at night and I breath a sigh of relief that I will get a bit of peace from him? Do you know how horrendous you feel as a mother to be happier when your son is in bed just because you can relax? I don’t want to feel like this. I want to enjoy the time I spend with Freddie and with a few hours a week respite to recharge my batteries I would be able to do this. But since you told me there is nothing you can offer us I don’t see how my family can get the much needed break that we all need.
Alot of people have told me that I should cry on you. Show you my tears so you really understand how hard it is. But I don’t want to jump through your hoops or beg at your feet. I have come to you for help, I have admitted that we find it tough so I don’t see why you think it’s ok to turn your back on us. To close our case and leave us struggling despite me picking up the phone and asking you to help us.
By leaving us without respite you will make my health worse, Evie may start resenting me as she never has my full attention and her relationship with her brother may be affected as he has always come first. My marriage may begin to suffer as we never get to spend any time together, by not offering us the few hours respite that we need you are tearing apart my family. When I rang you for help I never thought you would just leave us.
Luckily i’m a strong person and I will keep fighting. I will do what I can to keep my family happy with or without your help.