Wednesday, 3 February 2010

Autism - my son, his mother and the law

Colm has been exhibiting challenging behaviour over the last couple of weeks.

This happens when things aren't going the way he wants them to. The sort of things which wouldn't particularly bother you or me. Here's what was bothering him –
  • His arm was in a plaster and he was fed up with it
  • He wasn't able to see his new nephew for over a week, because he was hospitalised
  • He was upset by the effects of the earthquake in Haiti
  • The tumble dryer at his house had broken down.
Colm could have dealt with each of these problems on their own, but not all of them at the same time.

Colm's often can't explain why he is upset, so he will complain about something else – usually something else which he cannot change.

On this occasion he demanded to speak to his mother, visit her and stay with her for a week.

Seem like reasonable requests?

Colm has only seen his mother four times in the last 10 years. Two of those times were at his sisters' weddings, when both of them were present at the receptions. He only spent a couple of minutes with her on each occasion. On the other two occasions, his mother and her boyfriend at the time took Colm out for a meal and shopping. Both trips ended disastrously. On the first occasion, Colm's mother was banned from visiting his previous home by the management. On the second trip, she ended up leaving Colm, alone in my house for nearly an hour.  She does try her best, but unfortunately she doesn't know her son. Being autistic, Colm cannot be forced to do anything he doesn't want to do, but she still hasn't worked that out.

Colm speaks to his mother twice a year – on his birthday and on Christmas day.  Conversations last 1 – 2 minutes.  There used to be more phone contact, but Mum often didn't call when she had arranged to, or wasn't in when she was supposed to be. Colm, to whom routine is essential, is not able to tolerate this kind of behaviour and that is why there are just 2 calls per year now. In any case, Mum has never objected to this or asked for more contact.

So I had a dilemma. Should I let Colm contact his mother – and risk it upsetting him even more? What if she arranged to see him? I could handle the 4 hour trip to her home, but what about the 4 hour return trip with a potentially very upset young man?

I sought advice from his social worker, and she explained the current legal situation. It seems that Colm, and any other adult in similar circumstances, has the right to contact anyone of his choice – in this case, his mother - even if the receiver of the call doesn't want it and/or it would be a very upsetting experience for him – even if this course of action is likely to be detrimental to his state of mind. No one has the right to refuse this to him, without getting him officially declared “unfit” to make that decision. If things go badly, those who care for him have to deal with the repercussions as well as they can.

Colm lives semi independently in a house with 2 other lads, both of whom also have autism spectrum disorders. A team of carers monitor them 24 hours a day. I arranged with the carers to delay any contact with Colm's mother until he visited me. He is rarely distressed when visiting me or his siblings, so that would be an opportune time to call his mother. Or if we get lucky, he'll have totally changed his mind by then, and won't want to speak to her until his birthday in May.

Colm is visiting on Friday. It should be an enjoyable visit for him – sister Collette and her baby, Lucas, will also be here. Additionally, his plaster is being removed tomorrow, so that will be another of the causes of anxiety removed.

Wish us luck. I cannot express how heartbreaking it is to see Colm when he is distressed. And it must be 100 times worse for him...


agoraphob said...

So sorry that colm is going through a high anxiety period right now. I know it must be hard, but I can also see ho wmuch you love your son. Keeping you in my thoughts.

Have a great visit on ri!

maz said...

Aw (((hugs))) for colm and you too Robert! anxiety hassles ontop of any disability are always more of a challenge to cope with and an onslaught on your patience too!

I hope things settle a bit soon.
maz x

Stephany said...

Yes, it's difficult even more so when others do not understand them. Currently in that process now with a psych hospital and pressuring for appropriate independent housing, like an uphill battle.

Sarah♥ said...

Robert. Hope you're all well :)

Its a tough one, because at the same time of you wanting to protect your son from potential pain, you also need to let him make his own decisions.

But what do i know?


momcat said...

Good luck with the weekend visit. Hopefully with the distractions of having his cast off and seeing his nephew, the anxiety causing his desire to be in contact with his mom will ease off and he will forget he wanted to contact her. Maybe you can arrange a few more of his favourite 'distractions' or treats! :)

Em said...

hi robert

hope all goes well at the weekend with colm. it must be a constant struggle to keep a balance. i cant imagine how difficult the situation is. have a nice weekend.

Anonymous said...

Hi Robert,

I hope all went home with the visit on Friday whichever way Colm decided to go. It must be a very difficult position for you and though you have had many of those they can't get much easier with time. Hopefully as each of the problems is removed the removal of their accumulated weight will give Colm some respite.

All the best


Robert said...

agoraphob - Colm can be hard going sometimes, bur he's worth it!

maz - Thanks for the hugs :) Anxiety is a large part of the autistic person's life and trying to minimise it at all times is hard work!

Stephany - I hope you find somewhere as suitable as I found for Colm. It took years of fighting!

em - Thanks for the wishes! Keeping a balance...isn't that difficult for all of us? Finding time to look after everbody's needs is the worst problem.

Sarah - It's every parent's dilemma - when do you let your kids make their own decisions, even when you know that they're the wrong ones? You've got that problem to face soon too!

momcat - The luck you wished us for the weekend visit must have worked! (See latest post.)

Nechtan - Thanks for your kind wishes. The weekend visit worked out well (see latest post). I wouldn't ever call caring for Colm "difficult", but it can be frustrating sometimes.