Ryley had his first day of holiday program today.
And I admit, I had some tears AGAIN after dropping him off.
(What the hell is with ME??)
It is really hard to drop him off and place him in other people's care. Really hard.
I have been reflecting a bit on this today and trying to figure out if it is just me being stupid, but I don't think it is.
Something I have noticed over the past few weeks of holidays is that I do an awful lot for Ryley without thinking twice. I have only noticed it because I have had to check with David a few times if he has done certain things and it hadn't occurred to him.
For example.  Ryley gets extremely sweaty when it is hot. In fact, he gets extremely sweaty just when he is excited about something or exerts himself.
Automatically every morning, I put a powder under his arms because he gets a sweat rash. The powder keeps him comfortable during the day. David has been dressing him each day, and I have found myself (irritatingly so I am sure) rechecking and then reminding David about the powder. By the time I check everything, I might as well have dressed him myself (and quite possibly have been told that too...ha!).
I have been thinking of writing out a list of everything Ryley needs to be done every day, but think it would be too exhausting to think about.

When I picked Ryley up today from his day out, he had a dirty nappy which hadn't been changed all day. In all fairness, he must have done the dirty nappy while travelling on a bus, so it would have been difficult to change him, but in 6 hours, he still has a wet nappy.
It is reasons like this that makes me hesitant to let him go anywhere.
I know that I think of everything. I constantly check him. Make sure he has his drink, doesn't need a nappy change, isn't covered in sweat rashes from head to toe.
The thing is, he can't tell anyone. He just has to grin and bear it. Until he gets home. Then he crumbles in a heap and sobs while I change his irritated bottom.
(Before anyone asks, I didn't get a chance to tell anyone about the nappy. I will tell them Friday when he is next at the program. The people who run this program work at the same agency I do and they are fantastic at what they do, and I know will appreciate me telling them, and will make sure it doesn't happen again. So I don't want it to seem as though I am criticising them at all, because they do an AWESOME job).

Off topic a bit, tonight David and I noticed under Ryley's arms what looks like the beginnings of hair growing. I know the research suggests that people with WHS often start puberty early, but really? I guess Ryley is 9 next month, so it is possible. Is there anyone out there with an older WHS boy who can help me out here?? Guess I will put that question down on my list for Dr Carey!

So back to my topic of why I am so nervous about allowing other people to care for Ryley.
I just am.
I am his mother.
Part of my job is to protect him.
But part of it is also to allow him to live his life. Which is why I will keep sending him to his holiday program.
He loves going.
He saw two of his mates from school and went straight up and said "hi" (well, not a spoken word, but a wave). He is comfortable around his friends. He just likes being around people full stop.
I could never take that away from him because I have worked so hard to help him achieve that level of independence, so despite my stupid fears and worries, I need to ignore them and not let him be affected by them.

You should have seen the look he gave me when he saw me waiting for him. It was a mix of embarrassment and utter anger. If he could talk, his look would have said "Piss off Mum, I'm not ready to go home yet".
That is enough for me.

Comments

  1. Hey Anna, re. the puberty thing, I can't recall the exact time it happened to Richard but it was certainly a bit of a shock for Mum and Dad; in so many ways he still seemed so 'young' and all of a sudden he had this huge growth spurt, started growing facial hair etc.!! The one thing I do recall is that he had such a rapid growth spurt, he developed stretch marks all across his upper chest where he was just growing so quickly! They looked nasty for ages, just like tummy stretchmarks can; all red and silvery, but they have faded over time. Now he's a young man - he turns 28 tomorrow!! Where the hell has that time gone?!

    It's very very hard to let go, but that will all come with time.... at the end of the day, no one in the world looks after their children like a Mother does, so everything you are feeling is totally natural (not that I can really comment, as I'm not a mother and coming from a different perspective I guess!) but from an independance point of view, Ryley will be coming on leaps and bounds with the Programme and hanging out with his mates....

    Such a fab photo of your boys on the wallpaper. Gorgeous!

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  2. Sending a complex child off for others to care for is never a win situation- it's always a compromise. How much will you compromise? As long as you don't perceive any health issues associated with his going and you see he needs the interaction then it sounds pretty positive to me.
    Like you I pay attention to every little detail, only, as a professional it happens to also have had a major impact (understatement)on my son's health.
    Perhaps that is your role and not someone else's, since not everyone is as attentive to the same issues. It's great though to see him interacting and healthy.

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  3. Sarah- Thank you so much for your info about puberty!! A BIG HAPPY BIRTHDAY to Richie for tomorrow (or today)!!!!

    Eric-You are right. It IS a compromise isn't it? That is a really good way of looking at it. I sometimes feel like I am a control freak and worry too much. At night I go through a mental checklist to make sure everything is ready for through then night, as well as the morning.
    He is healthy and happy (and still a little bored!) which is fantastic and I am very grateful.

    Thankyou both for your comments.

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  4. I don't blame you at all for the feelings you have when dropping him off with others to care for him, I can't imagine! I myself have a special needs daughter and I have not yet left her with anyone, I just can't at this time, I would make myself sick with worry I am sure, let alone I don't have anyone qualified to do so with at this point! Anyways I hope things get easier for you, just know your feelings are valid as a caring mom!

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  5. Hi Anna, I just wanted to follow up and say I asked my parents about what age the first signs of puberty appeared - they said it wasn't anything out of the ordinary and although they couldn't remember exactly when, it was about 12/13 ish. But like you say, it's not unusual for people with WHS to just generally be ahead of the game in this aspect! Maybe it's a question just at your next routine docs appointment to rest your mind? x

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