Oscar is going away this weekend for his first EVER camp and weekend away from home. I am nervous and super excited for him. I am also away this weekend for a girl’s weekend. It wasn’t planned that way but I think it is a good thing. I will be surrounded by some of my oldest and dearest girlfriends who will without fail ply me with alcohol and laughter and fun and good food and I won’t have time to worry if he is OK or not! But of course I will find the time… ha ha.
It’s not quite as straight forward as just sending him off to camp. There have been many phone calls and discussions with the organization that are hosting the camp. Who is his carer? They haven’t assigned one yet. Do they know he is a runner? He is pretty fast. They will need someone young and fit! Do they mind getting very little sleep at night? Do they realise he will be up in the night and one hundred percent, he will try and hop into bed with the carer or another child? Is that a problem?
Oh Gosh! I think. Is that a problem for me? Who is the carer? Do I want him crawling in to bed with them?
The concerns and scenarios that run through my head could make me sick! The organization assure me they will do their best to look after him and he will be OK; but one can’t help but worry. We know what he’s like!
Oscar has only had one night away from us ever! It was with some friends Clare and Richard who have a son, Charlie who has Autism. It was a fun filled night of bed hopping and other antics. Oscar managed to wake up and sleep with every one of the five family members before deciding he was jack of their attitudes and that he would pack his bags and go! Their attitudes were of course wonderful as was their sense of humor (thank God!). It’s just no-one wanted to play or be smothered with cuddles and kisses at 1am, then 3am, then 4am in the morning. He got to the front door with his clothes and backpack on announcing “I’m going to get on a plane to England!” and then they were all up! It was some ungodly hour! I suppose Oscar thought he might try Granny in Kent for a slightly better response.
All jokes aside, Oscar is fabulous on so many levels but sleeping is difficult for him. A lot of children with Down’s syndrome have sleeping issues. Oscar suffers from night waking and restless sleep. He wakes two to three times after midnight at a minimum and wonders around our house. He sleeps with me then Rich then me again, and then he finds Sadie. Rich and I have almost given up on trying to sleep together because when he joins us, he tosses and turns and takes up the entire bed. I am the one who wakes up to him wondering around at night because I have learnt to be a light sleeper. But every now and then, I am so damn tired that I don’t and if he gets no response from anyone, that’s when he gets into mischief. We have barred his windows because he used to break the screens to get out. It didn’t matter what time of night or how black it was outside. I can’t count the number of times I have found him sitting on the living room floor with all the lights on, eating an assortment of food from the fridge. And that’s one of the good scenarios. So you can see that Rich and I have a few fears and trepidations when it comes to him going to camp.
When you have a child with special needs and you rely on community carers (who often chop and change), you cannot help having concerns for your child’s welfare. Whether they are OK. More often than not we have to leave Oscar with complete strangers. Oscar gets confused. He forgets what he has done that morning. He can be taken advantage of very easily. People put words in his mouth. We have had some bad experiences. Depending on who the carer is will determine for us whether he stays overnight at the camp.
So as all of these thoughts and concerns consume me, the organization calls. I cannot believe our luck! They have assigned Oscar to the carer, Olivia. We have known Olivia for about two years. She is one of the few permanent staff. She is young and fun and caring yet ridiculously mature and level headed for a twenty something year old. Oscar loves her! There are few people we feel completely comfortable leaving Oscar with and Olivia is one of them. She is amazing. She knows Oscar, she genuinely likes Oscar and she gets Oscar and all his funny little nuances. She deals with whatever he dishes out with a fabulous sense of humor and she never makes me feel bad. Best of all, I know wholeheartedly if Oscar was upset in the night, she would snuggle up with him in the same bed and comfort him and keep him safe just as if she were me. She is just one of those amazing, beautiful souls who genuinely cares and there are no ulterior motives.
Suddenly all my concerns have vanished. I now can’t wait to pack…. Not for me (well yes, of course for me, for my girls weekend away) but I can’t wait to pack for Oscar. With Oscar. We will do it together. I know he will find it fun! He will squeal with joy as I ask him to pick his clothes. He will insist on taking his suit jacket and tie – this goes without saying! He will definitely put in his Lebron James outfit along with his Cavaliers basketball. Then of course one always needs one’s Knight costume!
It’s not very far. He is only going local….But I don’t care. For us it’s a giant step. For Oscar it’s the start of what we hope will be more independence and fun times. Thankfully there are organization’s out there that recognize that children with special needs welcome these experiences just as much as everyone else. And thankfully there are good…No!.. Make that GREAT community workers out there, like Olivia, who really do make a profound difference to a family’s life.
I’ll let you know how he goes!