Tuesday, 24 January 2012

My Little Angel is Being An Angel

My Little Angel has been a true angel these school holidays. She has spent her summer holidays either at the Institute or helping us with Cam's therapy at home or listening to us talking about Cam and the Institute or being very understanding and patient because Cameron's needs have been greater. It has taken over our holidays and she hasn't complained once.

She hasn't been perfect, I am not going to pretend I have a perfect angel but when I look back over the summer holidays she has had to deal with a lot and most people have not realized the role she has played. We have reached a point now that I can't cope in our appointments without her and at home she often begs to be allowed to help Cameron with his cards and broom handle.

At times she has been clingy and at other times she's asked for her own time but that is understandable and we have made an effort to make sure she has had some special days and lots of cuddles and attention. Grandad has come to the institute twice over the last week so she could have some special time with Grannie which has put a huge smile on her face.

This morning it was My Little Angel who found Cameron laying on the ground and this evening she has been a little panicked about him. She even told us we better check him because he'd shut the door and she couldn't hear him singing. She's worrying about him.

People don't understand the impact on siblings who share their lives with siblings who have special needs. They constantly make sacrifices and they watch the stresses their parents go through and they try to help whilst being impacted by their own emotional response to the situation.

We have seen My Little Angel struggle emotionally because of the life she lives in our family. You couldn't find a more loyal, loving or caring sister and it breaks my heart sometimes to watch her fears for her brother and how confused she gets.

This evening she got very confused because Cameron was still up and she was going to bed. This may not sound like something that should upset her but you've got to look at the big picture. My Little Angel has grown up with her big brother being treated like her little brother and quite often she is given privileges which are more than Cameron is given. Such as staying up later. Why all of a sudden have the rules changed? Because Cameron has changed and suddenly doesn't need as much sleep but how is an eight year old supposed to understand all that? It's a lot for us as parents to absorb so how is she supposed to cope.

We spend a lot of time making sure that My Little Angel gets time with us which is special time just for her. We make sure that we don't forget her age and that she has different needs to Cameron. it gets challenging at times but we have to. She is just as important and we love her just as much.

Every family is different and every sibling is different just as every person with special needs is different but I think we can all agree that life is definitely not normal for a brother or sister who shares their life with a sibling who has special needs.

So here's to My Little Angel who brings incredible sunshine to our days and sometimes supports us more than the adults. We are so lucky she is our Angel.

5 comments:

  1. It is so hard for the siblings. I have taken my teenager for therapy when needed and it has helped him tremendously. Perhaps having a special needs sib makes our other children better adults, who knows, lets hope so.

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  2. I am a sibiling of a special needs child I can say that if my parents did the same as you do now I would resent my brother less then I do. My mum's whole world was my brother and so was mine and my sisters the nurses at armadale were more our mother then my mother was.

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  3. Di - It's nice to know that we are not the only people who have contemplated therapy for the special needs siblling. I suspect at some point we will take MLA to therapy for her to talk through her life with somebody seperated from the situation. She's had to deal with so much. I'm hoping that how we deal with things will result in a wonderful adult MLA but I guess we will have to wait and see.

    Anonymous - I feel so sad for you and your sisters. I can see how a Mum could become so consumed by the situation that they could forget that others have needs too. Thank goodness you had the nurses at Armadale to give you some of what you were missing.

    It's hard isn't it because it isn't your brothers fault but I can understand why you feel resentful. Sending you a hug.

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  4. Your Angel sounds like such a wonderful girl. I worry so much about the impact that having H as a brother has on Sean but I try to be open and honest as possible - without scaring the life out of him - and involve him where possible. Bless him, he wants to help - he's only 3 and will hold the oxygen while Hugh's having a seizure! I think it's better to involve him than to shoo him away as that might scare him more. I agree that the siblings have so much to take on, they grow up faster than they should too! I will also involve Sean in siblings groups so that he can process his worries and fears with other children that can understand. Hopefully Di and Jane the fact that we worry about them and consider these things we wont be at risk of leaving them feeling so upset and isolated as anonymous has. That comment upset me - I truly hope I never unwittingly do the same to Sean. Xx

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  5. We've always included My Little Angel. She has got medication for us and helped ambulance officers. I don't think you should hide the truth, it would only stress MLA more.

    I wanted to get MLA involved in siblings groups but the ones I had found closed before she was old enough. If I had the energy and time I'd start one myself but I just can't. I keep looking,

    We found that when MLA was 5-6yrs of age she started to truly understand the situation and that was when her fears really kicked in. I'll never forget the night I ran past her room to call the ambulance and she looked like a deer in headlights, she was terrified. It had finally dawned on her that Cameron could die. I managed to squeeze into our craziness a cuddle to try and reassure her.

    I hope we're handling it right but only time will tell. It's nice to have other Mum's to talk to

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