Took Amy into our local town last weekend where we had a bite to eat in a small cafe. She's at that age now where everything I do seems to embarrass her. If she sees kids her own age without their parents, she's constantly looking round at them in the hope they won't notice how cringe worthy it is being seen out in public with her 42 year old mum, oh ancient, embarrassing one. I just smile and pretend not to notice but our recent outing had me pointing out that being with your mum isn't as bad as it might look to a pre-teen. The girls she was wary of were sat a few tables away and looked about the same age as Amy. They had their own purses with money in and were ordering their own food. They were well behaved and polite, they were also street-wise. They'd obviously been eating out together for quite some time and were, I would hazard a guess, middle school girls who spend every waking moment together, have at least one sleep over a week and don't need to be constantly supervised.
Unlike Amy.
Being a pre-teen and autistic is so bloody hard. She wants to be like the others, but she knows she isn't. She wants to be let loose in town with her friends, but she knows she can't. She wants to spend time at her friends' houses, having sleep overs, meeting boys, doing all those girly things that teens do. But girls her age don't want to babysit their peers. They don't want to knock about with a girl-friend who needs to be supervised by a parent. Amy has a few friends and her best friend lives quite some distance away. The few friends she has in the area have their own circle of friends and it wouldn't be fair of me to expect their parents to take care of my daughter. You may think this sounds ridiculous. But it isn't. It's real life. It's something I've had to accept, come to terms with, adjust to. When I see girls Amy's age knocking about round town together, enjoying each other's company, talking about boys, about nail varnish, about who's house they're going to sleep at tonight, the wave that is the autism diagnosis washes over me once more. I've spent many years jumping over it, ignoring it, swimming through it. Now, as my girl gets older and her needs become more complex, that wave becomes tidal. And I have to find even more strength to get me through the next five years.
Being the parent of a teenager is never easy, and Amy's issues obviously makes it so much more difficult. Does Amy get to spend time with other girls like herself, in supervised groups? The autistic daughter of a good friend of mine goes on a supervised trip to France every year. She loves it, particularly the social side, and her parents get a much needed break.
ReplyDeleteThe only girls like herself she spends time with are girls from school but they all live at least 40 minutes away, so not like it's just round the corner. The trip to France sound good - that's something I think Amy would really like. To be honest, I'm not bothered about a break for myself though it would be nice, it's more a break and some respite for Amy.
DeleteHave you explored whether there any special needs clubs or support schemes anywhere near you? I know you are right out in the country but there may be something. It would give Amy the opportunity to spread her wings in a supportive and safe manner. Her school may know what is around or you could ring childrens services at the council to ask. x
ReplyDeleteYes, I've looked into it and asked the school to help me. There are a few places I could look at but there doesn't seem to be anything for Amy's age, more for children much younger. My faith in Children's Services in zero following their recent disgusting issues and it was pretty bad before! Though I know I may have to bite the bullet at some stage and make some enquiries.
DeleteI am anticipating this as well. My niece (who has AS) and my eldest daughter are the same age and the difference between them is glaring. My son (who has ASD) is almost 9 and I know these times are not far away for us, it makes me anxious I have to admit. There is a local group run by the National Autistic Society here where I live who organise days out and activities for kids & teens with Autism and their families, I know I will be leaning on them more and more as L gets older. I wonder if there is anything like that in your area? xx
ReplyDeleteWe have a NAS in Newcastle but it's an hour away at least. There doesn't seem to be much in this area. I notice the difference tremendously in girls Amy's age. She's probably the equivalent to a 10 year old rather a child who's 6 months away from being 13.
Deletedef being a parent of a special needs kid is hard....and helping her over those social hurdles is no small feat....there are def groups that provide social opportunity and support...i would def look into them...
ReplyDeleteIt's something I've been looking into for a while now, but have never found the right place for Amy. I won't give up though :)
DeleteNope its not easy hun. Teen years present all new challenges. But with your love and guidance Amy will be ok.
ReplyDeleteI will try my best, like I always do.
DeleteIf I could give you one of those great big hugs you enjoy, I would. A friend used to say that when the children are little, you have little problems and as they get bigger, so do your problems! At least Amy has a wonderful, thoughtful, caring mother X
ReplyDeleteThanks for your kind words. I so agree with that statement - problems grow as child gets bigger.
DeleteI know it's difficult...I grew up with a sister that has cerebral palsey, have a nephew that has a milder case of it...maybe that's why I tend to look on the brighter side of things...It could be worse...Much worse. You're a Great Mom and Amy is a doll....Hang in there.
ReplyDeletehughugs
You have a lovely way to look at things, Donna, that's something I admire about you. I try to stay optimistic but sometimes it fails me, especially when I see Amy hurting.
DeleteIt is difficult, I see some kids in school go through the same thing, and FB doesn't help! they see pictures of others seemingly having a great time, and often don't realise that a lot of it is a "public face".
ReplyDeleteMany teenagers look as though they're cool, have it all sussed, and yet underneath they are in a lot of pain. It's a really hard time, for them and for us, their parents. I also find it hard as a teacher, and all you can do is encourage them to be kind, remind them that we can all learn from each other. But you're right, you can't force it.
Hang in there, Amy has such so much going for her because she has great parents;lots of kids don't have that. You're doing a great job!
I won't allow Amy to use FB, Mimi. That's an absolutely no-go. She's far too vulnerable and I'd hate to imagine the consequences if she ever got involved.
DeleteIts not easy to see a teenager hurting, particularly because of autism. I will be feeling much like you if my grandson doesn't get accepted in college in Sept. I feel so nervous for him.
ReplyDeleteDon't know what the answer is. I guess they will both have to tough it out.
Maggie X
Nuts in May
Toughing it out is something they get used to throughout their lives. I always think special needs kids have a lot of strength, simply because they need it as they start to get older.
DeleteIt's when you have a child/young adult with autism that you realise how difficult and complicated teenage social interaction is! I think I am lucky having a son with Autism - I don't want him to be like a lot of the teenage lads I see but when he was younger (11 and under) I wished he could have "fit" in more with his peer age group. I started noticing others who were younger than him but acting much more maturely and felt he was getting left behind! :(
ReplyDeleteExactly same here; many of Amy's friends from the mainstream school she used to attend were much more grown up than she is and the difference was evident nearer to the end of her time there - just another reason I moved her to a special school.
DeleteMy son is eleven and he already finds it hard to socialise with others outside school. He is very babyish for his age and I worry that other children may take advantage of him. He really does want to fit in. After the summer he starts secondary school which is a big leap for him, but they do seem to have lots of social activities at the school which I hope will bring him forward. Its hard because a lot of the clubs and activities other children take part in will not have him. There may be activities in your area for autistic children, I know we have a couple of local charities that arrange special things for them which is a great chance to socialise.
ReplyDeleteThere are a few places but nothing I've found suitable for Amy as yet. Yes, starting secondary school is quite daunting for some children - it certainly was for me.
DeleteBelieve me, as the mum of a 13 yr old aspergers boy I do understand what you are talking about - however, autism is a wide spectrum and my son is at the lighter end, he is not statemented for example. He is able to do sleepovers and hang out with his friends and is actually the most sensible (the others are latchkey kids who are currently expelled/out of school due to behavioural issues - he always gravitates towards friends in these situations and I have learned to accept his choices). We do encourage him to have his friends here as much as possible which I find helpful but can be hard work due to their circumstances... I hope your daughter will have her friends to your place for girly sleepovers as much as possible and that eventually she will be confident and capable enough to go to theirs too as she grows older - if I was one of those mums I have to say I would want to invite you both for a sleepover to ensure nobody missed out! Bettyx
ReplyDeleteShe does have friends over but it isn't often. Amy's a bit of a loner and does enjoy her own company. Maybe as she gets older it will get easier for her but sleepovers just aren't an option right now.
DeleteI hear you! x
ReplyDeleteLet me point out to you the other side of the coin if I may. Those girls might get pregnant, smoke, do drugs, will no doubt waste most of their time on Facebook socialising with mis spelt updates. Wasting their precious lives bothering about clothes, appearance, slimness, the latest fad, I could go on.
ReplyDeleteMy daughter is Down's. She's not bothered about anyone showing her up, nor does she care that her constant companion is usually her grey haired mother who is ready for the knackers yard. As she states to me at every opportunity when I might remark that she has missed going around with a 'gang' of girls whenever we come across any, 'I'm not bothered Mum, they are silly anyway! All they bother about is boys and their looks!
In other words, as always there are ups and downs, pro's and con's, and I promise you that there will come a time when your glad that your daughter is who she is..they have their own gifts that so called 'normal' girls lack.
Of course, you are quite right in what you say, but I will never judge anyone, especially people I don't know. I am bringing Amy up to be the same - she sees the person, not the disability or the looks. But that doesn't make it any easier for her when she just wants to be "normal" whatever that is - which in my opinion, is perfectly acceptable.
DeleteI guess now is a time when autism starts to really affect one's life, when one is on the way to becoming an adult. Other than the obvious difficulties she will face as an adult, this time is one of the most difficult because of all the changes. It's a great transition she is going through.
ReplyDeleteHaving said that, it doesn't mean that she can't have a happy or possibly even, normal life (happy doesn't necessarily mean normal and normal doesn't necessarily mean happy). If it'll make her feel any better, tell her there's a girl with no apparent issues who hasn't really had a circle of friends she ever went out with, never really had a boyfriend and doesn't believe she is missing out on anything.
I don't know if you've ever watched Mozart and the Whale, but it's a film about people with autism and it shows how they deal with life. The two main characters have Asperger's syndrome, but there is a circle of people (a self help group) who have more common forms of autism. I've not watched the whole film, nor do I know how accurate it is. I do however think- from whatever I've seen of it- that it's sort of hopeful and shows that even with autism you can find happiness and you don't necessarily need to fit in with the rest of society to do so.
We are all different, we all have different talents and problems and we all make different choices. I never felt like everyone else and the people I could hang out with were few and usually had qualities similar to mine. When I was a pre-teen I remember desperately trying to fit in with often catastrophical results (I would end up embarassing myself). I was never happy or pleased and hated myself to death. I still do, but at least now I've accepted myself and try to modify the world around me in order to accomodate my needs and wants, not the other way round. I'm not gonna try to fit in. The moment I stopped trying I felt free and happier. Now I'm just trying to be myself and as original as possible.
Amy will feel shut out during this time, but worry not, it does get better.