Saturday, 21 February 2015

Small things that are huge in a Sibling world...

In the background of most special needs children are their siblings, they are the ones who have had their lives changed from what they are used to when their disabled sibling has joined the family or if their disabled sibling is older than them then they have known no different and are "used" to their life. They are the ones who often are left to their own devices when parents are busy doing therapies, tending to the child needs as many need 24hr care, they are the ones who are often left with other family members when their sibling goes into hospital, are often dragged to the various hospital appointments and left to amuse themselves in waiting rooms. They also have to grow up much faster than other children as they have to help out around the home, help to care for their disabled sibling, sacrifice days out & lose out on holidays if they have to come home earlier than planned due to their sibling being unable to cope the the different environments, they have to deal with the stares/comments and reactions of the public whenever their sibling is doing something that isnt seen as "normal" ( I hate that word as what is normal anyway?) like screaming due to sensory overload, meltdowns, making loud noises and so on...

As I've already mentioned earlier in this blog I have two older boys - Leo & Lucas...during the first year of Roo life they knew no different, they loved their brother and thought he was so cute and loved it when he smiled at them. It was only as Roo got older that the questions started "why cant he walk", "why does he not speak", "why does he make those funny noises", " why cant he eat normal foods" etc. I answered their questions and curiousty as much as I could. 

Leo, my eldest has struggled the most as during his fourth year at primary he was bullied for a while and they made fun of the fact he had disabled parents but we soon got it all sorted out and he became happier but the damage was done, he became very sensitive, very emotional, a worrier. He was referred to Young Carers to help him...he really struggled with it as he didnt like being the odd one out in his class, the only one from there who attended the Young Carers and he began to resent me for making him go. After speaking to the staff we agreed that a break might help and I enrolled him in the rugby....all was good for several weeks and then he decided he no longer wanted to do the rugby so we then had him going back to Young Carers... He is in two minds about it...doesnt like the fact that there isnt anyone he knows and he claims its "boring" but yet he enjoys the activites they sometimes put on like a trip to Macdonalds, to the beach etc! He has had some bother from some other boys in his class calling him names and bringing up the issue of him having a disabled brother which in turn has made him angry. Dont get me wrong he adores Roo and us but he is angry at the injustice of Roo being different, that his parents are deaf, that he is the "odd" one out among his peers but we are working around it.

It doesnt help that the past year Roo's behaviour has become challenging in many ways, he is quite destructive and tends to destroy things by throwing them, bending them till they break, ripping paper and so on. He doesnt understand why its wrong, he just thinks its funny but his brothers get quite frustrated esp if Roo destroys the lego building they spent ages building, or if he breaks things like their headphones, controllers, rip their papers etc so they shout at him in frustration which does no good as Roo will then get very upset. They want to play board games with me but get frustrated when I cant as I have to watch Roo and the times we have attempted to play Roo will grab stuff off the board and wreck the game making the boys upset. They have to wait till Roo goes to bed or if their Daddy is home he can watch Roo while I play with them.  

But the one thing that really upsets them more than anything is when Roo wont interact with them, wont tolerate them touching him, looking at him, talking to him. They keep trying but when Roo is like that there is nothing anyone can do to make him tolerate them so if they try to hug him they are met with screams and Roo pushing them away, the hurt in their eyes is plain to see...I try my best to explain but they dont understand how Roo can be fine one day and so different the next. When they keep trying to hug him or even kiss him goodnight/bye I find myself telling them not to do it as it isnt worth the meltdown that follows but sometimes they do it anyway and then get upset themselves. I often worry that I'm affecting their relationship by stopping them from going near Roo on the really bad days but the fallout is sometimes really not worth it esp if he screams for hrs on end making everyone tense and upset. Sometimes they have said to me " I dont think Roo loves me anyore" and its heartbreaking to hear them say that but slowly and gradually they are starting to accept that this may be the way Roo will be and are learning to avoid him when he is having a bad day...

But every now and then Roo will do something that takes them by surprise and the delight in their faces says it all, they just beam with happiness at that small thing, the tinest touch and it simply means everything to them to have that bit of interaction whether it lasts seconds or minutes.

We were walking to school one morning when all of a sudden Roo reached out and grabbed Lucas hand so Lucas opened his hand to hold Roo's hand and they walked for a few mins like that. Lucas turned round and said " look mummy, he is actually holding my hand! I think he really likes me!" His face was lit with a beaming smile and he looked so happy...this small gesture meant the world to outsiders they just thought it was a normal thing - two brothers holding hands but they dont realised what it actually meant for us. I managed to capture the moment quickly on my mobile hence the blurriness!! 


Leo used to help me out in the mornings by getting Roo changed and even did the nappy changes but he can no longer do it as Roo won't let him but the other day Roo let Leo put shoes on him and his coat which is a rarity and Leo was over the moon and said to me that he felt happy as Roo let him help. Such a small thing yet it gave Leo that tiny boost and feel more positive. 

When we go to stay with my inlaws we often have their four cousins over for a visit and they really enjoy it and have lots of fun together, their youngest cousin is only three months older than Roo and they are often amazed at how much she can do and understand, at how much she joins in their games and talks to them. They have become so accustomed to Roo that when they see another child the same age they forget that Roo is "different" and I used to get "I wish Roo was like Lainey (cousin)" but now they don't really say it anymore, they are accepting that Roo is unique, that he is who he is and to celebrate every single thing he learns to do. They appreciate the small things that don't mean much to others. Leo asked Roo for a cuddle yesterday and Roo went over to him and hugged him...Leo was over the moon that Roo had understood what he had asked and followed it through.

Most days they accept that they need to leave Roo alone when he is in one of his moods, but the days where Roo is happy to tolerate them , they are the best days as I love seeing my older boys faces lit up, the happiness shining in their eyes. If it's just a smile, a giggle, a hug, a touch, a gift of slavers & boggies wiped on their clothes they are such small things but they are the world to my boys.

Friday, 13 February 2015

The first show..

I often hear parents saying that they wish they were a fly on the wall so that they can see what their child is like in nursery/school and there have been times when I've thought the same but more so at the moment as with Roo he can't tell me what he does , has been doing etc.

Last week Roo nursery class held a small party to celebrate Burns day so hubby and I went along, curious as it would be the first time we would see Roo with his peers. We watched him come into the hall along with all the children and our first thought was "hope he doesn't see us"!! Reason being was at sports day last year when he saw us he got upset wanting to come to us and didn't understand why he couldn't. But this time when he saw us he gave us a wry smile! 

First part was some Scottish dancing and we watched with big smiles when they did the moving in a circle as Roo clearly loved that - running round in a circle holding hands as he had a big smile whenever he did that part! When they did the rest of the dance moves Roo would just stand and look around the room, stealing a glacé at us with a smile on his face. When it was time to do the circle the teacher and the child on the other side of him would take his hands so that he understood it was time to move round.

Then they were put into the stage, Roo 1:1 was beside him all the way through and they had 4/5different songs to sing...while the other children sang Roo obviously didn't and instead he watched everyone around him, watched all the staff who were singing and doing some signs/actions with all the songs...every now and then he stared at us and gave small smiles. I love how the staff do actions/signs with the songs as with my other children their nurseries never did that. One of the staff knows more signs than the others as she works with sn children as well as mainstream nursery kids and my hubby and I were able to follow the songs simply by watching her, it was fab.

At a recent appointment with his community paed she had pointed out that Roo was still quite delayed, but we just brushed it off in a sense as we knew he had GDD but it wasn't till we saw him with his peers during this show that it really hit us that he is behind, needs an adult with him, and at times appear as if in a world of his own but we take consolation in that he isn't aware of it and from all the smiles we saw he was happy and that is the most important thing. Also it showed us that we made the right decision to defer Roo for a year as no way he was ready to start school this year. I was impressed at how the staff got him to sit during it all and that he coped with it all brilliantly. The staff there are simply fab

We may feel overwhelmed with worry , sadness and love but at the same time we feel incredibly PROUD of Roo , of how far he has come, of how well he coped, of how happy he was during the whole show.