So here’s the thing…

We managed to get away to the coast for a short easter break last week, and while the weather was good, children were naughty and chocolate was plentiful – things were not as they should be.  I had chance to take stock and look around at what ‘normal’ families do on holidays.  I saw families with kids of similar age sitting on the bank of the lake fishing, just sitting.  No one was telling anyone not to eat their fishing line, rescuing children from the water, putting clothes back on anyone or stealing food from other fishing folk.  I watched these families with such envy, so much so I had to walk away at times.  I almost felt that they were being overly normal just to piss me off.  I want that simple life so bad.

Autism changes everything.  It changes your perception of a normal lifestyle.  Sometimes you can sink so far into that lifestyle, that it’s not until you see how families that are unaffected by Autism or any other disability live their lives, that you get reminded what you are missing out on. 

Friendships have been the biggest thing lost for us.  We can’t have normal friendships with a.n.y.o.n.e.  It is just too hard to maintain, over the years my closest friends have all edged to the fringes of being people who I occasionally poke on facebook.  Invitations have slowed down (stopped), and I know this is because we never accept them so eventually people just stop asking – although I wish they would, just being asked is nice it tells me they are still thinking of us – but the reality is we can’t bring our kids to your home without forward planning and lot’s of it, and you can’t expect that just for a cup of coffee.  Coming to my place isn’t that fun either, when my kids are in their own zone, it really is their own zone – to do in whatever they please, and yes that may involve using a guests sleeve as a hanky, raiding their unguarded handbag for mints or running around and around said guest until they’re dizzy (the guest that is).   This is why I forget what people do for fun these days, haven’t seen it for a while.

Where am I going with this?  Not really sure.  But here’s the thing, I may not be able to come over for that coffee, this doesn’t mean I don’t want to – it’s not you, it’s me and my menagerie holding me back.  Friendship, however stretched is valued, and very appreciated by me and families in the same situation as me.  So don’t forget that invitation, you never know one day we might raise enough danger money for a babysitter to take on this lot.

Autism isolates whole families.

26 Comments

Filed under Autism

26 Responses to So here’s the thing…

  1. Candy, I feel for you. I have a blogging friend with an autistic child (1 of 5 children) and she has shared some of her experiences and thoughts too. http://momfog.wordpress.com/

    It is sad that you are isolated by this.

  2. Pam

    If you are ever in Coffs Harbour, Maya and I would love to meet you all Candy! x

  3. Jeanette

    awww Candy, sorry that people have stopped asking, I wouldn’t. I would accept your children as they are. But I do know how you feel (to a certain extent), I wont take Jacob anywhere.

    argh, I know what I want to say here but I can’t put it into words. But if I was going to Goulburn tomorrow, I would gladly stop by and put up with being used as a tissue or climbed on etc etc.

  4. Candy I so get you honey, we are complicated too, for us its not Autism, but other disabilities and behaviours diagnosis along with some mental health issues too……..I have 7 kids right now, 5 are my forever kids and we have kids in care with us too. We just went on a week away and I really felt more stressed after the holiday than before it, trying to keep a lid of everyone in a caravan park was SOOOOO NOT Fun. I look at other families with envy sometimes too, but mostly I am chasing one of my kids and don’t get a chance to check them out. I lost alot of my friends when my kids where younger but slowly I have been rebuilding those friendships….as 5 of my 7 are now in school and the 2 home are my baby and toddler both of which are so far diagnosis free ;o) life has got a little easier…………like you it wasn’t my friends it was me, what with hospital admissions, therapy appointments, IEP’s, Dr appointments for my lot I barely had time to breath let alone lunch with friends etc..and yeah the invitations stopped, but ya know what I discovered as I reconnected with some of the girls, it wasn’t that they didn’t want to invite me it was that they worried I was stressed and asking me to commit again to something else would cause me more stress…..Facebook is my saviour even now, GOD I wish I had facebook and my blog 13 years ago and I wouldn’t of felt so lonely all those days in hosptial with my daughter……Keep your chin up honey, life will and does get better, Hugs Nicki

  5. Rach

    i cried..

    sounds like us, ben went back to school today and the very nice frontt office lady asked him what he did, he went to the anzac march and the movies otherwise stayed home as all too hard for him and therefore us.

    I miss the friends that we used to have, thats why I love facebook and twitter, to keep in touch in a way that suits an autie family.

    I have one friend that braves our house and she is rewarded with hugs now and I love you Anne from Ben, she has a son with autism too who is older so she is so perfect with him.

    Even my family wont come or have us to visit, my mum lasted twenty minutes here last time and had to leave.

    But what makes me saddest is ben has never been invited to a birthday party with his peers and he is 8, he doesnt seem to mind, and it is cheaper for me but it would be nice for him to be asked.

    • It is the little things isn’t it. Birthday party invites are rare in our house too, I always wonder if my kids realise what they’re missing but who wants to ask the question?
      Thanks Rach. 🙂

  6. I took my children to the park yesterday, for a late lunch. We had two parents and two children and it was just too much for both children, in amongst the other kids playing normally, and we had to leave.

    It saddens me to realise how much extra work and planning everything is.

    Feeling your pain.

  7. Denise Enersen

    I feel sorry for those people who don’t ask you around – they don’t know what they are missing out on. You have a most delightful family – each with their own unique personality. You are one special mum and don’t forget that. Will be popping in for coffee when next in Goulburn.
    Remember …..
    Every now and then, without warning, each of us has a good day.
    “Please Lord, it’s my turn today isn’t it? Maybe tomorrow? Next Tuesday or Wednesday? Half a day Thursday? 8.30 to 9.15 Friday morning???????
    Miss you all. xxx

  8. Jo

    I admire you Candy, as I do for any parent of a child with any form of disability.

    Quite often I get told I must have the patient of a saint to do what I do. For those who dont know, for 8 hours a day, 4 days a week, I am a Disability Support Worker in a group home for Adults with high medical support needs, as well as that, the poeple I care for have a mutitude of disabilities to go along with it.

    BUT I dont have the patience of a saint, in fact I have next to no patience at times, I feel that I am caring and compassionate, but most of all, I have the want to help advocate for people with disabilities, sometimes we are thier only voice. I love my job, it is rewarding, it has good and bad, and down right disgusting, but I would never give it up!

    It is hard when you enter the community, every persons eyes are on you, Im sure I can hear the snide comments of unacceptance and disgust. The thing that irritates me the most is that people just dont get it. People with disabilities are just like the rest of us, they have feelings, they do care, just because they dont “look and act” like us “normal people”, they are stereotyped.

    Our biggest difference is that after 8 hours, I get to go home and forget about it for a while, you dont Candy, you are that 24/7. I honestly dont know how I would cope if it were one of my own I had to care for, but Im sure I could. I know I would love them just the same. I read your posts, and they make me laugh, and at times, I could just cry, but not out of pity. I think you are an amazing woman, thoug I have never met you.

    I have quite often talked about you at work, and my friends and collegues say, now thats a woman who we take our hats off to. And if I could have you around for coffee I would, infact if you are ever my way, lets meet up, open invitation!

    • Thank Jo 🙂
      And it is people like you that I couldn’t do without! Everyday I am thankful that there are people like you that take up jobs in disabilities. Teachers, aides, respite workers just to name a few – heros to me! I have to deal with this everyday, but you choose to. That makes you all kinds of awesome in my book.

  9. Danni

    Sending you hugs (my iPhone prefers jugs – must be a male).

  10. Lisa

    HI Candy, I’m not sure what to say here but I hear every thing you say and I feel for you, as you may know Christopher was extremely difficult to take any where and I became gradually more isolated and envious of people with a “normal” life I often found myself wishing things were different….Now they are….so much different, I am living the “normal” life I envied..but am I happy ? No I miss Chris so much it is a physical pain that pretty much controls my life and all I can think now is that as hard as Chris was to live with it is 400 times harder living without him and the hole that he has left is so much larger due to the time he consumed in my life, the peace and quiet I once craved is truly haunting me. All I can say is enjoy the good times, the positives, and grin and bear the negatives because the alternative is so much worse. I hope all your gorgeous kids are doing well and you are enjoying your new home 🙂 Lisa

    • Hello Lisa, I have been thinking about you a lot since we moved. Thank you for getting in touch, I felt so awful not being able to see you at the time as it all happened on the days we were filling up a truck with our stuff to move. You are right, and I wouldn’t know how to even imagine a life without these kids.
      I miss you gals from My Time, I haven’t started going to any meetings here yet. I just don’t have the time, and it’s bloody May!
      Please keep in touch, I’d really love that.
      x

  11. Kristee

    Candy, we have known each other for many years – and I have always thought that you are amazing.
    I can understand what you are saying about isolation – not just for the individual but also for the family.
    (In actual fact I have been to therapy about it). But you are doing a fantastic job – and it is easy to see your children are very much loved by you. Perhaps more so than the children of so called ‘normal’ families.

    Take care, xx

  12. Amy

    I love your honesty and way with word Candy!

    Please know you and your menagerie are always welcome at my place (my phone wanted to change that to palace, it obviously doesn’t know what it’s talking about) 🙂 They were spectacularly well behaved last time I was super impressed. I’m sure youre just waiting for me to make it safer, but come anyway. You are one amazing mum and I feel privileged to know you.

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