Thursday, 23 April 2009

My Autistic Son - Part 8 - Funding fiascos wreak havoc - and - a death in the family

HAPPIER TIMES! the Fleet Air Arm Museum, Somerset, 2008

...on holiday, 2008 the Tank Museum, Dorset, 2009

...but before that...

In 1998, Colm was 18 and had to leave his school. The nearby further education college had facilities to continue Colm's education, but I wanted better.

No one was able to give me advice about which further education establishments would be most suitable for Colm, but his social worker did come up with a list of places which could offer courses for young adults with similar abilities to Colm. The only way to assess these places was to visit them. This task took a couple of months and I drove several 100's of miles. I made a short list of 3 potentially suitable places and visited them a second time. Eventually, I was able to choose what I believed would be the best further education establishment for Colm. It was a residential school which had stables and taught independent living as well as academic subjects. Colm would be able to indulge his equestrian pursuits. The only drawback for me was that it was a 2 hour drive from our house. When I relayed this information to all the relevant health professionals and Colm's social worker, they unanimously agreed that this was the best place for Colm at this stage of his life. All I had to do was apply for the funding from our local educatiuon authority. That was in January. In late August, we got the letter we had been waiting for. It was good news - Colm had been awarded funding for 2 years with a possible extension for a 3rd year.

However, for Colm those 7 months of waiting had proved to be exceptionally difficult. He knew that he had to leave his school, but didn't know where he was going, and until I had a definite decision from the education authority, I couldn't tell him anything. It was extremely stressful for him, and his behaviour at home was a manifestation of his stress. He had many bouts of "challenging behaviour (temper tantrums) which lasted between 2 and 4 hours. During this time he was implacable. I had to stop whatever I was doing and stay with Colm, trying to talk him down. He would bang his head against the wall, throw nearby objects around, shout at the top of his voice, exhibit threatening behaviour, spit etc. The rest of the family had to stay well clear of him, and his siblings stopped inviting their school-friends around, afraid that their friends might witness one of these episodes. During his worst episode, he smashed his bed, cracked the thick, solid pine door of his bedroom and destroyed most of the bedroom's contents.

These challenging behaviour episodes carried on for a couple of months after he moved to his new school, until he settled in there. After that, he had the most of 3 happy years there.

* * * * * * * * * * * *

In early 1999, my father died suddenly. It was term time, so Colm was away, staying at his school. Because Colm and his grandfather had had a close relationship, I felt unable to break the sad news to Colm over the phone. After phoning ahead to inform the school what had happened and letting them know that I would be calling with Colm quite late in the evening, I drove for 2 hours to see my son. When he opened the door of his room, he looked at me quizzically.

"Why you here, dad?" Colm's speech was (and is still) truncated.
"I need to talk to you. Can I come in first?"
"Ok dad." He let me into his room. "Why you here?"
I took a deep breath.
"Your grandda died this morning, Colm."
No reaction from Colm. Then...
"Yes, he's in heaven."
"Lucky heaven." Lucky had been the family dog. "Tiger heaven." Tiger had been his grandfather's cat.

There was a pause.

"Watch James Bond, dad."

I was being dismissed! Colm wanted to watch a video! The conversation was over. Obviously Colm had felt no emotion about his grandfather's death. Subsequent enquiries to his school confirmed that Colm had been unaffected by the news. I am informed that this is a common situation where autism is involved and pretty typical where Asperger's syndrome is involved.

* * * * * * * * * * * *

In 2001, Colm had to move again. His funding for education was finished. Now I had to choose (with Colm's acquiescence) where he should live. His first choice was to stay at home - the only place he knew well. His school and social worker felt that to live at home full time again would be a retrograde action. I also had to consider Colm's siblings. Their mother had deserted them at the start of 2000, so they were vulnerable and needed as stable and ordered an environment as I cold provide. Colm had had a detrimental effect on their lives already - would it be fair to risk a repeat of this? The answer was obvious.

I researched residential establishments in the same way that I had researched further education establishments. Again, Colm's social worker gave me a list of places to consider. After a few months, a couple of hundred miles and several visits to residential establishments, I thought I had found the best place. Set in a quiet rural environment, it was run by a charitable organisation, had its own farm where they grew organic food and produced organic eggs. Colm would have work to occupy him. There was plenty of space and - most importantly - it had two horses.

Colm was scared, but after I showed him other places, he agreed to try out this one. After a couple of weekends and a full week's stay, Colm decided that it would be OK to live there.

Unbelievably, I had the same funding problems as before, when Colm was due to move school. It took months to get a decision - months during which Colm, now back home since the school term had ended, was making his sisters' lives hell. He was in hell too, because after each bout of challenging behaviour, he would cry uncontrollably for a while. "My head, dad," he would say repeatedly, sometimes followed by banging his head against the wall for a while, indicating that he couldn't control his behaviour even though he knew he would regret it afterwards.

The decision about funding - favourable - arrived eventually and an apprehensive Colm went to his new home. As before, his challenging behaviour continued for a couple of months, but eventually subsided.

If you want to read the earlier parts of this story, you can click here.


rosiero said...

A moving story. Such a shame the local authorities took so long to come up with the finances. I suppose it has to be approved at committee, but even so!! You have obviously done such a lot for Colm. I hope he is happy where he is now.

Robert said...

hi rosiero. Colm is happy now. Part 7 of his story (prob next week) will bring it up to date. Funding authorities only see numbers & are totally blind to the people they are supposed to serve. Disabled people IMHO get a rough deal from the state.

diver said...

Another terrific post Robert, so full of authenticity. You sure have been on an amazing journey with the lad! It's great to hear the way he adjusts to his changes - how painful it would be for you both were this not the case!

Mandy said...

Hi Robert

I was going to ask how Colm is doing now but see you will be doing an update in Part 7.

Look forward to reading that.

You know my view on how the state deals with disabled people.....slowly and grudgingly.

My only experience of having to explain the death of a loved one to my daughter was when Mum died.

Due to my illness, and work demands, she wasn't living with me at the time so her other Nan did most of the caring through that period of her life.

My daughter actually tried not to talk about Mum's death in front of me for fear it would hurt me more. How sensitive to and protective children are of their parents eh?

Having spoken with her Nan, and wanting to know how things were affecting her, I was told that and so I picked a time when Em and I were alone to say that it was important for Em to be able to talk about her Nan in front of me. I said that people should be able to express their hurt about losing a person they both loved (and together) as important as sharing the memories of the good times.

Em rarely let out her grief in front of me but we both cried then and hugged. Is such a pity, I think, that Dad has never been able to share his grief with me.

I don't think a stoic approach to grieving does anyone any good but appreciate everyone deals with grief in their own ways.

Have rambled on and apologies for that.


Robert said...

Diver - Thanks for your valued continued support. Colm & I are still adjusting to changes!

Robert said...

Mandy - no need for apologies! I feel complimented that you feel able to share your experiences with me.

Colm was emotionally unaffected by my father's death, but I most definitely wasn't! It was the biggest emotional event in my life. I had no one to share my grief with, since my wife at the time was (metaphorically) living on another planet and my one & only sibling had relocated some distance away.

Like your daughter, my 4 daughters were scared to broach the subject with me - perhaps afraid to see the only strong influence in their lives break down and blubber like a 2 year old...

It was only after I had established a relationship with Marie that I was able to let out my pent-up emotions & I'm very grateful to her for that.

I totally agree with you that stoicism is the wrong approach to grief. It can be very destructive & has probably contributed to your dad's problems. I'm really pleased to learn that you & Em were able to share that moment. I now make a huge effort to share emotional problems with my daughters in the hope that they will be able to share their emothional problems with me and/or each other.

As you've read, Colm is pretty much ok at the moment, but it took a disaster to sort out his situation! Hopefully I'll have that post completed sometime next week.

Anonymous said...

Hi Robert,

All of you have really come through a lot. I dare say it was not easy for any of you. But Colm is really a credit to the hard work you have put in over the years and his relatively stability would have been impossible otherwise. You have never taken the easy option with regards to your son's future in the years when these decisions would have had the biggest impact. That would be hard enough were he an only child but with other children, work and no doubt other stressful factors added to the mix it is an incredible job you have done.

All the best


Robert said...

Hi Nechtan - thanks for the compliments...but I don't know if I really deserve them. Wouldn't any other caring parent, with the resources that I have, have done more or less the same? In any case, I can't imagine behaving differently - it's just who I am. Since I know you to be a caring father, I imagine you would have done similar too.

Casdok said...

Oh i feel for you and Colm. researching, getting funding, transitions etc can be all very stressful.
And like you I can't imagine behaving any differently.

Robert said...

Casdok - Thanks for your empathy. I know that you know what it's like!

Anonymous said...

I'd like to think I would do the same Robert but not so sure I wouldn't just do what was needed. In your own case you have gone beyond the call of duty and went through everything maticulously. It has I'm sure been worth all the hard work in the long term.

Like everyone else I look forward to the next installment.


Anonymous said...

This has actually reduced me to tears, pricking the backs of my eyes. I'm not upset as such but just thinking about how Colm (and maybe my daughter at some point) has no choice to but get used to living somewhere other than their home. It does actually break my heart. I could never leave my home. Our children are incredibly brave, don't you think.

This was a beautiful post.

CJ xx

Anonymous said...