Life with an autistic child inevitably results in lots of compromises. What most families may take for granted as normal is often unachievable for those with special needs children. That's not to say life is worse but there is a definite need for some creative thinking and flexibilty and it definitely helps to let go of any ideals you held for how family life should be.
One of our household compromises has been to become quite nomadic, especially when it comes to sleeping and eating. Most mornings either H or I wake up in a different bed to the one we went to sleep in (largely thanks to Toby's nocturnal shenanigans). We're usually awake for a few hours each night as Toby doesn't often sleep through and is quite active when he wakes. When it comes to meals we take a similar flexible approach. Toby grazes most of the day and is an extremely faddy eater so we only tend to eat our Sunday dinner altogether at the dining table, the rest of the time it's picnics, knee balancing and plate juggling. It's all to do with coping – I think if you strive for perfection when it's not an achievable attainment then you're less likely to cope (that's my excuse anyway!)
Toby is of course the most adventurous nomad of us all, usually choosing to eat at altitude – he often heads off to the top of the climbing frame or his platform bed with his assortment of bowls but his current favourite place is half way up the stairs!
It makes for a bit of an assault course if you ever need to dash to the loo in our house!
little cotton rabbits 
He’d like our house. There’s a big half-landing, with views through the banisters of both up and down stairs.
The cats like to perch there. It’s a good spot.
One area of your life where you always achieve perfection, Julie is your knitting – it is second to none and delights thousands. But your home and garden are pretty perfect too: they always feel welcoming, relaxed, full of love – who could ask for more? As for Toby, what a perfect angel he looks there on your stairs.
Raising my children I have always gone with the theory – ‘If it works for us then that is good enough.’ Sometimes I think the societal pressure for things to be perfect stops us enjoying and living in the moment.
Good for you for recognising what is and is not realistic and letting Toby do what he needs to do to be secure and happy. There’s nothing wrong with ‘good enough’!
And why not? The stairs is as good a place as any!
there areb more important issues to deal with than where Toby eats his dinner! It looks a good place to me – might try it myself.
Our home would offer at least three staircases to choose from and he would have plenty of tree climbing buddies. You are a wonderful mother…just thought you should know that we notice that. ~Kelly
unDeniably Domestic
My Mum used to sing that A.A Milne (I think) song to me all the time.
‘Half way up the stairs is the stair where I sit.
There isn’t any other stair quite like it!
It isn’t at the bottom.
It isn’t at the top.
But this is the stair where I always stop!’
If it’s good enough for Christopher Robin and Pooh…..
Letting go of those ideals is so hard though! My daughter has lissencephaly and when I was pregnant with her my head was filled with ballet lessons, girl scouts, frilly dresses. . .
But you are right, flexibility is required! Have you ever read Welcome To Holland?
You are doing a fantastic job and are a wonderful example of exactly how any family should work: love, patience, flexibility, acceptance and laughter.
My 2 year old nephew was just diagnosed with Autism and we’re all still trying to get our heads around it. I’m going to forward your blog to my sister-in-law. I think it will help.
Thanks for sharing your story.
I understand very well why he is choosing that place. It is perfect ! He has no one behind him in this corner and he can see everything.
I told you before that both our sons have Asperger.
Our youngest is goal-keeper in a water-polo team. That way he has no players behind him and oversees all.
I read your little stories regularly and they always make me feel so humble. How do you manage to fit so much into each day – your children, house, garden and your lovely knitting. I love your little rabbits cos they remind me of a rhyme my late mother used to say to me (more years ago than I care to remember – ‘A rabbit has a shiny nose – this fault it cannot mend because it’s little powder puff is at the other end!’
I do understand. We have our own night time shenanigans on this side of the pond and I find cheerios in every corner of the house. I think you’re coping remarkably well and love Toby’s choice for dining right now!
Toby is very lucky to have you as his parents. It’s so hard to let go of what’s expected of us and do things in a way that suits your own family.
There’s so much pressure on parents these days to do things a certain way. Well done you for doing it your way!
xxx
Good for you….the food is eaten and enjoyed and Toby feels happy!
xxx
What a beautiful photo. Your life sounds similar to mine at times. My eldest (4yrs) is also on the autistic spectrum and life is topsy turvy at times but we just go with it. Will’s favourite eating place is balanced on the back of the sofa so his little brother (nearly one) can not touch him! Thank you for sharing theses moments.
I love the picture! And your philosophy is one I am trying to teach to my children. If you are inflexible and don’t accept change or differences, it makes life in general so much harder. “Go with the flow” is my motto!
Gorgeous photo! Toby still into yellow food I see! I’m all for doing whatever works for you and your family, nothing wrong with being a bit unconventional if it gets you through the day successfully.
I’ve just become your new fan not long ago (when I chose knitting as my new hobby). This story about your life with Toby just reached me at the right time! It really helps me realize that coping with my stubborn first-born is not as difficult as I should have felt. It’ll keep reminding me when I’m about to lose it next time. Thanks and good luck with your family. You’re doing great!
I always like to think that the only rule is that there are no rules. If you know what I mean?! Thinking creatively gets you out of all sorts of sticky situations and you’ve got creativity by the bucketload!
Thank you for this post. From another mom….with a special needs child……
Would this new product be of any use? –
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Apparently you get a 14 day home trial…
Like Natasha, I immediately thought of Christopher Robin, too. We’ve just completed a first year of living with a terribly restrictive routine imposed by taking on the care of an elderly relative and we quite often sit halfway up the stairs to the 2nd floor to eat a picnic lunch or tea, it gives a better perspective on things somehow – and there’s a great view. You’re doing a great job.
I was always rather fond of trees when I was a kid…..
What a perfect place to eat, I sometimes eat my lunch on the steps at the front door in the sunshine.
food where you fancy is an important part of life. After spending yesterday moving things in the pouring rain hubby ate his tea in the bath rather than getting out. Seemed perfectly reasonable to me – and I think we’ve eaten our lunch on the stairs before too so I’m glad to see we’re in such fine company ;o)
What a sweet mummy you are!!
what a wonderful mum you are your view of disability a breath of fresh air Toby is a very lucky boy to have such a flexible and understanding mum x
A great post, we go through similar things with Jamie, and have to be as flexible and laid back about things as possible….at the moment i am trying to persuade him to wear something other than tracksuit bottoms and a t-shirt so he doesn’t freeze this winter, this is going to be a tough one 🙂 xx
We have 6 children who are all on the spectrum somewhere (aren’t we all!) so routine is very important. I always think if everyone is happy I must be doing something right. Who gets to decide what’s normal?, that would be the person living their life to the best they can. You do what works at the time!
My boss and I regularly have conversations about this kind of stuff. I’ve mentioned before about my Downs brother and my boss’s middle son has Autism. We regularly agree that we both have very different definitions from other people about what is “normal” in our homes (or in my parents home in my case). Things that seem completely bizarre to other people seem perfectly reasonable to us – like eating your lunch on the stairs, or not moving any of the 200 plastic figures which live on the conservatory window ledge (because they’re all in “just” the right place), or only eating beige food, or knowing that your chances of sitting in a particular chair for any length of time before you get ousted are slim to none!
I completely agree that you learn to see your own family’s little quirks as just the way things are. I think in the long run it makes us infinitely more tolerable of other people’s idiosyncracies – because we sure enough have plenty of our own!
xMx
I must say I get so happy from reading this post and all the comments. I am from a family that are nowhere near what others call normal, no diagnosis, just wierd. But I though you might want to know that we never even had sunday dinners together. I think that very few familys are what we call normal, even if they eat all meals at the table. And he looks just adorable there at the stairs.
Isn’t there something special about sitting on the stairs. Why not dine there too?!
It is wonderful you ca let some things go and reduce the stress in your life. I have a Down syndrome grandson who is low functioning and I know that expecting his behavior to match the rest of the family’s would be futile! I’m glad you have found ways to cope and make a good life for all!
PS I got your pattern and love it! I’ll wait for the fox!
Maureen
I know how stressful it is living with an autism but he will outgrow and you will have a wonderful son! Hang in there and work with him… Patience is most important thing in life. Will we be seeing any Christmas knitting from you in the near future? We love your miniature stockings!!
Colourful characteristics are what make us all part of just being a person.
Would the earth and our life be the same if everyone was a clone of ourselves?
Enjoying the diversity and artistic ways of everyone is part of our enrichment…..well,mabe except mothers-in-law! ;o)
Enjoying food…anywhere….anytime sounds good to me!
Toby is a little treasure!x
I come here because of your soooo cuuute knitted toys!
I am French and have a daughter with a chromosomic disorder and some autistic behaviours (she has a twin with no disorder, except teenage !)…
I can recognize some of the things we are living… and I have the same philosophy to adjust and take the good or funny side of the cloud ! She often comes to table to eat after praying her to, but only when her plate is full and she’s leaving when it’s empty or when she had enough, or when she is not that fond of the food. The best food for her is “junk food”… ;D
Her nights are ectic… they were when she was a baby and the nights became best and worse… we often sleep together at the moment -aheum don’t tell to the psy ! ;D
Your story reminded me of A.A. Milne’s charming little poem, “Half-way Down.” I’m sure Toby likes this spot for similar reasons — or no reason at all! Life’s just like that.
Halfway down the stairs
is a stair
where i sit.
there isn’t any
other stair
quite like
it.
i’m not at the bottom,
i’m not at the top;
so this is the stair
where
I always
stop.
Halfway up the stairs
Isn’t up
And it isn’t down.
It isn’t in the nursery,
It isn’t in town.
And all sorts of funny thoughts
Run round my head.
It isn’t really
Anywhere!
It’s somewhere else
Instead!
As a special ed teacher and the aunt of a 6 year old with autism, I applaud your flexibility. It is wonderful that you are able to find ways to make life happy at your house. That’s all that really counts!
We can relate having a daughter on the spectrum. I just blogged about a boy named Luke that is hoping to receive a trained autism service dog. I had never heard of them before , how wonderful! Here is the post if you care to read:
http://blueberrycottage.blogspot.com/2009/12/blessing-others-at-christmasautism.html
You got to do what you can do…Like you said there is no point trying to achieve perfection…something we all need to remember. As long as he’s happy and your happy then it is “perfection”
My elder daughter, when small, used to eat her meals outside in a Wendy house. Either sitting at a small table, or sometimes eating off the plate on the floor. She doesn’t do it any more, but I can’t really remember how or when it stopped. I was told at school that she was ‘educationally subnormal’ by one unenlightened teacher, as she was defacing her work. She was just bored. She has 17 GCSEs and is now studying for 4 A levels. Normal is as normal does.
I think you do an incredibly awesome job at coping. I love how you make your family work, your love for them shines through the pages of your blog like a lighthouse. Even though getting through some days must be just a matter of putting one foot in front of the other – that’s courage, my friend.
(figured out my commenting problem!)
Julie – I love this post! So true – what’s ‘normal’ for us is definitely not for others. And vice versa – there’s a lot of ‘normal’ things that we can’t/don’t do. But you learn to live in your own kind of normal.
(Amy’s letter arrived – tell her ‘hi’ and she’ll get a return soon!)
I am so glad that you are Toby’s mother. 🙂
I have read this post a number of times over the past few days and am at a loss for words as to what I want to say – definitely ‘thank you for this small glimpse into your family’s world and I am in total awe of anyone who has children with special needs. Your patience is amazing and very inspiring! XX
I think I’d also pick this spot to relax!
You can see both directions and also have your back to the wall! Perfect nook!!
Thanks for sharing this wonderful pic!
My 9-year old son is autistic. While our life isn’t always what I plan, it sure has been more fun!
My youngest son is diagnosed with autism and the eldest is in the process of getting his diagnosis… We’ve given up our diners at the table a long time ago… Doesn’t matter where they sit, as long as they eat!
It feels like a relief to let go of all the things you’re supposed to…
Thanks for your blog, just found it!
Love from the Netherlands XXX
I have a grandson with ASD. He’s almost 10, diagnosed at age 2, just like Toby. I saw your ‘Holland page’ just now and it brought a few tears. About 3-4 weeks ago my daughter began slipping a teaspoon of fermented food into his morning smoothie. Two weeks later, he was amazingly “fog-free”, almost “flap-free”,and even made a spontaneous statement which he had never done before. It lasted about a week. After doing GFCF for several years, a few days ago he was put on the SCD diet in hopes of duplicating that one incredible week. If you have not tried truly fermented vegetables (not the canned grocery store kind), I encourage you to do so. I love to hear about your darling little Toby – thank you for that and your patterns as well. I have your egg cover one, and plan to knit 2 of them soon.
I too have an autistic son. I am so touched by the response of all of your readers to your situation. I’m taking their responses personally as your situation is similar to my own. Thank you all for your compassion! MB