Autism; The Early Years. and Acceptance.com

I am reading and empathising with yet another new diagnosis at the moment.
As hard as things are for me now; it was much worse then.

Can you remember the clothes issues? When they would fight with you to take off their shoes; coat, pants and Nappy? We used to put Boo in dungarees, with the difficult clasps, sometimes with a t-shirt over the top, to ensure that he couldn't take off his nappy.


How about wearing a seat belt or buggy harness?

I remember the first time Boo got out of a buggy harness and landed on the floor of a shop where I was buying milk. I was mortified. How could this happen with a 14 month old?
How could I let this happen to my baba?

Before his sister was born; I had this plan to get a fabulous Italian buggy with a sort of standing step at the back for him to ride on while she had the seat. Mamas and Papas still do this model; "The Pliko".
When she arrived and I made the first attempt to go out; I ended up using the pouch to carry Bratty because Boo was not staying on his step. As Bratty got bigger; I kept trying to get Boo to stand on the step. I mean; the lovely Italian kids in the sales brochure could do it, why couldn't my little guy?
At one stage I stitched up a kind of wrist harness to attach him to the handles of the buggy while I used body force to keep his body up on the step.
Today I will admit it was nothing short of a handcuff! And it didn't work. I think I ended up with Bratty sitting on the hood that day while Boo was man handled into the seat and strapped in.

I remember using my feet from an early stage to hold him in a seat while I used both hands to do up the straps. Mamas and Papas were great for this; you could click it all in very safely without the risk of pinching. But I needed a lie down in a darkened room afterwards.

When that no longer worked I started using a walking harness on Boo, without the lead rein, and looping the buggy straps through that.
I had by then given in and got a double buggy.

Side by side stroller the first time. Maximum torture your sister opportunities there.

24 buggies later I got another Mamas and Papas buggy, this time the "tandem" front and back seats. I found by putting Boo in the front and putting the hood up between them I could minimise the opportunities for sister hitting and biting. It wasn't very aerodynamic with the heaviest weight in the front; but it worked. Boo was 4 and Bratty was 2 when I was still pushing that thing around, up and down hills with a full load of shopping sequestered around it.

These days I know that the buying and selling of the 24 buggies was just a symptom of the incredible grief and confusion you go through when you have a child with special needs.

Why cant they walk beside me like other kids?
Why can't they stay in their pram?
Why can't they stay at the table and eat with a spoon?
Why won't they look at me when I say their name?

Why won't they call me Mummy?

And at the time I thought it was ME ME ME that was fucking up.

I was successful in my career before children. Okay, I wasn't very housewifely but that was always excusable when I was bringing in an equal wage to my partner.

Now he was the sole breadwinner and I was a fuck up as a wife and mother.

It is a bloody awful time, and I hate to relive it. But I think for the sake of the newbies we have to think about that time; and come up with pro active suggestions as to how best to cope with it.

Feel the grief and get on with it.
Acknowledge that your expectations of normality are going to have to change.

Start learning about the culture of autism and start learning what you can do to change things; and what you are going to have to accept.

Because just like the A.A. prayer; you are going to have to recognise what you can change; and learn the skills you need to do so.
You are going to have to grow (an extra?) a set of huge bollocks to enable you to push through and stand up to whoever you need to to enable that change,
and hardest of all; you are going to have to recognise what cannot be changed; at least for now and log on to that most difficult website - Acceptance.com

With much love to the newbies.
you actually inspire me to keep going.
xx

Comments

debbie said…
again, i have to say, you are an incredible person and i so enjoy reading what you have to say.
Anonymous said…
My god two kids, and I thought I had it hard. I feel as though I am reading about my life and yet you are so positive and upbeat.
Thank you for showing me this site.
I am only 22 and feel looking after a 3year old only diagnosed (but not on official paper so treatment cant start) and a one year old)is making me out a failure.
You are a huge inspiration and I know I am doing the right things so thank you.
Good luck with your own family and keep in touch,
Claireh x x x
Jean said…
hey hammie,
you have a very special gift that raises you head and shoulders above us...you have enormus breath of vision...you don't forget where you came from, while keeping a steely gaze on the future...and your two pretty feet firmly planted in the present.
how do ya do that missus?
I so want to leave the agony of those early day behind me, yet they are vital to where i am now
Wonderful post doll, i take my hat of to you XXX
Anonymous said…
Hi Hammie, I'm going through the stripping stage at the moment,omg what a nightmare, My little boy age 3 is as strong, it takes 2 to get his nappy back on, he's wearing his one pair of dungaree's every day now, good idea about the t-shirt over the outside aswell, will try that, he's wearing his all in one swim suit to bed, only a matter of time before he figure's out the zip, oh the joy's of special motherhood, you have to laugh or you'd cry,

Riaxx
Mrs. C said…
THANK YOUUU for this post. I've been trying to google "oversized onesie" for the diaper problem. I kept getting... unusual results.

Will have to try the overalls!
K.Line said…
I love this post H. You need your own talk show. And my word ver is "taxest".
Make Do Style said…
Brilliantly put xxx
Skye said…
Thank you for linking to that article - I have an aquaintance (playroup mum) who I will forward it to, I think she needs a dose of understanding and tolerance BIG TIME.
Casdok said…
This brought back a few memories. I am glad those days are over, they seemed to go on forever.
Clive said…
Great post!

You put it all so well!
Anonymous said…
The "equal breadwinner vrs. crap wife and mother" rings a bell here. I have to say I still find it hard to accept that I may never have my career back. I admire how you managed to channel the energy and ambition into a new direction!
Truf
Sharon Morris said…
Yep, and for some families it really doesn't get much easier. Its a hard road for many and compassion goes a long way. xx

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