We had a funny weekend (funny peculiar not funny ha ha!). As Toby gets older and becomes more aware of the world outside his insular one he’s beginning to find changes to routine harder to cope with. He’s also developing a stronger will so although he’s 5 years old he’s really just hitting the terrible two’s tantrum phase – if he wants something and doesn’t get it we know all about it! Anyway, Saturday was a nightmare day. Toby was very unsettled – probably because he’d had only 2 days back at school and then along comes the weekend (that is NOT his routine!). There was much crying, screaming, flinging and fussing and he ruled the roost with the rest of us mostly doing his bidding in an attempt to have a quiet(ish) life. He finally went to bed at 11pm and we rolled in soon after, completely shattered. So on Sunday we decided to keep busy and got up early to go swimming. The local pool does a fun family session with waves and floats. The kids had a great time but once again we were reminded just how different life is when you’re living with autism. I looked around me at all those happy children, chattering and laughing and playing with their mums and dads and there was Toby – happy as anything, drinking great gulps of pool water, oblivious to all but the ripples in the water and literally screaming with excitement at the waves. I’m long used to ‘funny looks’ and stares from others but it is hard when your child is so obviously different and people make an effort to move away from you. We came home to lunch and then Toby spent the afternoon on his trampoline in the garden.
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Fun you might think – well yes, but Toby has to bounce with no socks and no trousers and it was raining lightly. It goes against all my maternal instincts to let him stay outside for 3 hours and bounce with no trousers in the winter rain but then I’m learning that flexibility is the key to surviving with autism and if he’s happy then we all are! (and I bundled 4 tops on him so he looked like the michelin man with 2 stick legs!) I think my New Year’s resolution this year is to have the confidence to go with my gut instinct and not worry so much what others think, afterall what counts is your kids happiness not the judgement of others. A lofty ambition for me, but I feel so supported by all of you who read and comment on my blog that I might just achieve it. Thanks so much for reading my whitterings and commenting – it means a lot to me!
little cotton rabbits 
You’re a wonderful Mum for letting Toby BE Toby. Who cares what the rest of the world thinks!
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I totally agree with Claire. You should definitly go with what feels right for you and your family and blow what anyone else thinks. Sounds like Toby had a wonderful time on Sunday and that’s the only thing that matters. And of course that he has such a loving family as yours obviously is. I think your New Years resolutions sounds just perfect.
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So it wasn’t just me who had an interesting weekend with an out-of-sorts child. I hope Mark’s behaviour at school this week is better than it was over the weekend. We get this at the start of every school term and it drives me bats.
Wish I was as patient and understanding as you. I went down the ‘yell at your kid’ route instead. Not that it did either of us any good. Hey ho.
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Let him bounce naked! If that is what he wants and it gives you a chance to breath!
I mean, mine was under the chairs at the Science Museum poking people and laughing!
You are a great mum, and incredibily patient, and I know exactly what you mean about the ‘looks’, now from me they get one back, or I throw in some comment about him being disabled and they soon shut up, and quite often say sorry, ha! God, what a witch I am!!!!
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I think your New Years Resolution should be ‘ Who gives a Fiddler’s %*@$ what anybody else thinks’
It’s means mine for years and I highly recommend it.
And anyway, I’d quite like to bounce up and down with no trousers on meself.
)
You sound like a lovely Mum.
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Go with the gut instinct. I think that is the only way to survive parenting. Other people are far too judgemental – I have two “normal” children and still get plenty of weird looks so I’m sure it must be doubly wearing for you. Take heart that those who understnad really care and admire you for what you are doing and those that don’t have no idea what they are talking about.
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I have nothing but respect and admiration for your efforts. I have been snivelling with a cold and feeling sorry for myself – this post just reminds me how much I have to be grateful for and what a terrific job you are doing. just you carry on – regardless of convention… you are amazing.
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Well done you. Just ignore the looks. People are so ignorant. I’m glad Toby got the chance to enjoy himself this weekend. You are a very kind and understanding Mum. I am struggling with Rousseau’s philosophy today and your post has inspired me to go on.
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If there’s one thing I’ve learned over the years with having three children it’s, ignore the looks. There’s always bound to be some moron out there who wants to ruin a little fun. What I wouldn’t GIVE to be able to bounce in the rain with no socks or trousers….and have a mom who is so darn understanding :o)
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If more people bounced with no trousers on then the world would be a better place!.
We have ‘dilemmas’ here (not autism) and we get funny looks…i’m past the point of caring..letting the kids be kids and desperately containing myself so that i don’t spin on my heels and do rather rude fiddlers %*@$ signs at folk who think we’re doing it wrong!
I’m all up for bouncing…hope the routine gets back on track…
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First – I love the new masthead!
Second, I wish you great success with your resolution. It is difficult feeling the pressure from without, and I will silently be there with you each time you strive to go with your gut. Life would be a better place if we’d always listen to ourselves, I’m sure.
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Great resolution Julie!
When Bailey was younger and far more noticeably different I’d have loved a t-shirt with “what are you looking at” or “didn’t your mother teach you it’s rude to stare” in big black letters. But alas we just hold our heads up high, pull back on the wobbly chin, blink away the tears and soldier on.
I am proud of you for going to the pool, for letting Toby bounce in the rain and for being brave enough to tell the world.
Thanks to Lyn as well, that’s the best response I’ve read in ages.
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PS: At Bailey’s weekly swimming lessons he would drink the water then lay on his back like a whale and spit the water as high as he could, disgusting all around him if it landed on their child, I giggle now as they were usually the women who gave the nasty looks.
He also bounces on the tramp for hours at a time, straight after dinner when you would normally tell your child “no you can’t go on the tramp, you just ate”. But just like you, I do it for the peace and sanity, not the quiet ‘cos Bailey yeehaas very loudly while bouncing! I can now see the funny side of these oddities because Bailey is as happy as a pig in mud, so why on earth should I be upset.
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If every child was lucky enough to have a mummy like you the world would be a much nicer place x
Love,love,love your new look!
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I’m so sorry Julie but this post made me laugh, I had this vision of Toby on his tampolene and well it made me chuckle. Your doing a great job, let’s all bounce up and down without our trousers, that’s what I say!
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When and Why did the world become so judgemental? I love the fact that children are so unique, no matter what their circumstances. If only everyone could remember, appreciate, embrace and encourage each others uniqeness! I support your new years res and hope to remember this for my daughter when times get challenging. I think… no, I KNOW you are a FANTASTIC mum and salute you. Happy New Year and I love your new mast head too…. can’t wait to buy another of your gorgeous creations.
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What a great mum!
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Julie you are as brave as any woman I have heard of. Some people wouldn’t even consider writing about these sorts of things and here you are sharing them with many, many people. I hope that this act is a somewhat cathartic and helpful one for you.
You have my full support. Besides, bouncing half naked on a trampoline is something I think we may all like to try at some point in our constricted adult lives.
Love Cherry
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You know, if bundling him up on top and letting him bounce with no pants and socks works for you, then go with it! It’s good exercise, fresh air, and it makes him happy – what could possibly be wrong with that?
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Look on the bright side, at least he’s not completely naked!!! It’s too exhausting fighting every difference so sometimes it’s nice to celebrate our ASD kids individuality. Keep on being a great Mum to your special boy:-)
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Hi, you are absolutely brilliant. I have 3 girls all going through the 2 year old tantrum stage (their psychologist told us they have never been led through it, just allowed to stay in that developmental phase), I feel your situation!! I also live daily with strangers looking at me funny because my girls act unusual. I hate it how people automaticaly lay some “blame” on a parent who’s kid doesn’t fit the norm, when the people know nothing about the child. I love the attitude and strength in your New Years resolution.
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I can only agree with everyone else – you have to do what is right for you and your family. I’ve been ignoring the looks for many years now, my son is now 18 (going on 9) and things do get better. Over time your own attitudes change and fortunately so do the attitudes of strangers. Autism is much better understood – but one thing doesn’t change, mothers (and families) know best how to help their special children and you sound like you are doing a fabulous job. Keep it up – Toby is a lucky boy to have a Mum like you.
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LOL! I am getting a good laugh out of that ‘bouncing without trousers’…but in good way! Sometimes you just gotta take ’em off. My son (who is 9 years old) is Bipolar, and has a lot of autistic tendencies, just not enough to be diagnosed. The very second he comes home from school he takes off his jeans and walks around in a t-shirt and boxer shorts…then gets very upset when his older sister’s friends come over. lol!
My 5 year old daughter, who is “normal” is quite a dresser herself…just yesterday we ran errands all over town with her wearing a Christmas t-shirt, a turquoise skort, very wintery looking tights made of wintery colored stripes and leopard print, and those purple, feathery dress-up shoes! Most people give her (and especially me) very weird/bad looks, but, one lady came over, told her how great her outfit looked and that she must be a designer, then told me how great it was that I “Let Claire be Claire”. A wonderful lady indeed!
So…you are doing a great job as a mother and he is going to have some wonderful memories and become the person he was meant to be! Yea Mom!!!
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I am so blown away by all these amazing comments! I love our blogging community soooo much. Julie, thank you for sharing your weekend with us. We have to live in “the now”. Breast cancer has taught me that we only have today. Do what works today as you have been. Life is so precious and really quite short so live, laugh and love today. I have begun an exercise to help me not care what others think. The last two weeks I have walked around everywhere without a wig or head covering. My bald head has encountered many stares, but who cares, I am bald and proud! It seems to be working. My nephew has Autism and he is the love of my life. I am very proud of him and his parents for the way they raise him. One day at a time! You are doing it.
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Hi JUlie
My eldest daughter is non verbal low functioning and you guessed it autistic. Like you I have been there, done that and got the t-shirt and gone beyond the embarassment. The trouble with autistic kids is that they look normal unlike Downs Syndrome kids or some other mentally disabled kids so people don’t understand why they don’t behave normally. Now she is in a group home, I can look back and laugh at some of the things she did like take another kid’s Happy meal right out of his hand while we waited to be served at McDonalds when she was 8 or 10.I also used my dear friend’s line as she also had an autistic kid, “He is mentally disabled is that your problem too” to someone who made a stupid comment or stared. I have also told rude strangers to take a running jump off a short pier when really fed up like the idiot in the public library who complained when my daugher was making the posts of the metal shelves ring. So just go on being thick skinned and tell them where to go when you have had enough.
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