Autism: to pee or not to pee ….

Oh boy. There’s always something …

Ian spends his days at a fabulous place, with wonderful people, who always and only have his best interests at heart, and who go out of their way to keep him entertained and happy.

But when Ian wouldn’t use the bathroom there, they were concerned. He would have a wee at home before he left, and would go as soon as he got home, but for the whole day at the center, he would hold his urine.

This worried them. And I’m sure, rightly so. His bladder and kidneys are being well exercised, but I doubt it can last forever.

Admittedly, there’s family form here …. My mother once called me ‘a camel’ because I didn’t need to go to the bathroom as often as she thought I should. But Ian’s lack of bathroom visits had become an issue, and I would have to come up with a plan to deal with it.

Problem number 1:

Ian wouldn’t even go into the boys’ bathroom at the center. Wouldn’t cross the threshold. Now, I’m not going to cast aspersions and ask “What the hell happened in there to make him so resistant?”; I try not to make those kinds of waves. I just applied some common sense: will he go into the girls’ bathroom instead?

Yes, he would. Problem number 1 solved.

Problem number 2:

As soon as Ian knew why he was being guided there, he would put on the brakes and refuse to cooperate. Mum was called. Could I put in an appearance and help them?

Of course. I’ll drive half an hour to supervise my child using the bathroom – five minutes – and drive half an hour home again. For my son.

Not for your peace of mind; for him.

Problem number 3:

Ian responds differently to different people. He will do some things for one person, but won’t do them for others. Which is a big problem when he has a different supervisor week by week, and I’m the only one who can see the issue…

Problem number 3 has not yet been resolved.

Everything seemed to be going ok. My presence was enough to ensure that Ian did what staff required him to do.

I would hide in a room, listen to his supervisor try to persuade him into the bathroom, and appear – magically – when he put up too much of a fight. “Do as you’re asked, Ian.” I’d say. “Please listen to staff.”

The joke was that Ian began to seek me out! The staff suggested Ian might look to me for ‘reassurance’. They’re so kind.

I strongly suspected he looked for me to see if he really had to do as he was told.

Either way, I was rumbled.

But some tenuous progress was being made.

Until last week Tuesday.

Hiding in the art room at the center, I could hear the staff member trying to persuade Ian to go with her – “Come with me please, Ian. Thank you. Come with me please, Ian. Thank you. Come with me please, Ian. Thank you.” – and my head was starting to buzz. My mummy-brain was doing it my way : “Ian, bathroom. Now.”

I was called to assist. Ian was being difficult.

Actually, Ian was in full bullish resistance, with his heels dug into the carpet, and a set expression on his face.

I managed to manoeuvre him into the bathroom, but would he go into the stall? Not a bit of it!

But I was there with his carer, and all I wanted was for him to do as I ask.

He got a bit physical, pushed me back against the stall door.

And here, writ large, was the difference in approach.

His carer gasped and said “Fiona, be careful!”

She was afraid.

Me?

No.

My ire was roused. I could feel the energy, like white light rising from the depths of me. I got in his face.

You are not the boss of me! I am the boss of you!

Well, my parenting style is my own, and it has served well enough thus far, and sure, Ian has rights, but I’m not sure the right to NOT pee is actually included in there, and besides, no matter your age, special needs or not, you should listen to your mum.

I asked his supervisor to leave, and after a few awkward moments, he did as I asked, and sat on the toilet. He didn’t wee, but for us the battle was over.

There was a brief hug … a sigh … and a long journey home.

Of course, we’re now back to square one, and the entire bathroom acceptance process has to begin again.

There will be a meeting, and decisions will be made. And I shall have to take the bull by the horns and speak up, which will mean possibly hurting someone’s feelings; at the very least, denting their self esteem; and specifying that only one favoured member of staff be involved in the bathroom business.

Because Problem number 3 definitely has to be addressed.

He will for some; he won’t for others.

6 thoughts on “Autism: to pee or not to pee ….

  1. Love your easy style of writing. So much empathy and so much common sense. You’re a fantastic mom for Ian. He’s a lucky lad.

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  2. You are not the only one who see the issue Fiona, the organisation and staff see it and they know it because it is the same problem in every service which desperately needs to be addressed, go to your meeting and tell them it’s a disgrace because that’s what it is. Ask them to log the complaint and get the other parents to do the same. It is a nationwide problem and as a social care worker who loves what she does working in a centre similar to Ian’s my time there is limited as I will no longer be able to afford to stay doing what I love to do. My own children will be heading to college I will be forced to move to an alternative workplace as I will no longer be able to afford to live on such a low wage. Share your knowledge with the staff, tell them what may seem incredibly obvious to you, they will do nothing but respect and appreciate whatever you are willing to share, Ian knows that staff will come and go, he has learned this from life experience, but you, you are his consistent person and he will never do things for anyone else like he does for you, tomorrow his staff may be gone but you, his mother will always be there. I think for that you are amazing and I think he thinks that too 💙

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  3. Do the staff give him his privacy in the washroom, or do they insist on being in the stall with him. I too used to work as a caregiver, and some people just want respect. They want to have their dignity. I am not saying this is Ian’s issue, but it could be something that simple.
    How do they decide when it is time for him to go to the bathroom? At their convenience, or his need. Does he know sign language for bathroom? Teaching him that might help if he is non-verbal, or doesn’t like saying such things in public. I am just brainstorming, but often that is all it takes….

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    • Ian would not (by himself) go to the bathroom from 8am to 5pm; it doesn’t worry him; it doesn’t worry me; it worries his caregivers and they want him to change – and have asked my help in facilitating this.
      If Ian were left alone in the bathroom, he wouldn’t do anything. And he’s verbal and capable of asking, but he never has.
      I appreciate your brainstorming. I wish it were that simple.

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