Ralph's initiatives - exploring the "third dimension"

"It's all about Ability"

Ralph has "grown up" amazingly since Jenny passed away. He talks more clearly, has started using the first person pronoun "I" more often and  shows extraordinary abilities that no one had any idea he had. After taking over Jenny's smartphone, he discovred the joys of WhatsApp (unaided) and is now an avid user, posting messages and photographs to all the family and many friends. 
 
Paddling back to Simonstown from Kalk Bay (17km round trip)
 
 Leaving Kalk Bay harbour after coffee and cake at the Olympia Cafe

I took professional advice from a number of people who work with people with intellectual disability on how best to handle bereavement.  The advice  was four fold:
  1. Let Ralph move at his own pace and tell us what he wanted when and how
  2. Help him make the "1st Transition" (the loss of his mother), so that he could cope with the "2nd transition" (my passing). (The professional team team obviously took one look at me and decided I was unlikely to be around much longer!)
  3. Be careful not to let him transfer too much of his affection for his mother to me, otherwise it would only make the "2nd Transition" not only harder, but potentially catastrophic. (This was not speculation - there is case history to back this up.)  This was extremely hard.  Just at the time when you want to embrace him and hold him closest, you have to help him build independence and "distance". 
  4. Be aware that he may take big changes in his stride but that small events could trigger an explosive reaction.
One event that happened shortly after Jenny passed away, is that Ralph moved into her bed. This was partly because he was feeling insecure, but as we later found out, much more because he felt I needed "looking after". Sweet, but violated points 2 and 3. So put my thinking cap on and rearranged the house, moving Jenny's bed into Jenny's study (which Sue had cleared while she was here). Big change? Enormous, especially as sleeping had always been a problem since he was 4 or 5 years old and for 25 years he had slept in the passage outside our bedroom door. I took him through and showed him the new arrangement with considerable trepidation. "Oh", says he with scarcely a second look - and has slept in his own bed every night since - for the first time in 25 years! 

Those who were at the funeral will recall that I told Ralph that "Mommy will always be here for you in church and at Humberstone when you say your prayers at night".  Well, the week after Sue and Walt left I took him to church and was kneeling at the alter rail with him. I turned to him and said quietly, "you know Mommy will always be with you". He turned, gave me a sharp look and said emphatically "I know". It was with a grown up voice and certainty that I have never heard or seen before. 

Another incident, was his strong desire to go the Drakensberg.  He really does love the mountains - they bring him an inner peace and contentment. He is a living embodiment of Jan Smuts' famous quote: "When we reach the mountain summits , we leave behind us all the things that weigh heavily on our body and spirit . We leave behind all sense of weakness and depression . We feel new freedom , a great exhilaration , and exaltation of the body , no less than of the spirit". 

Faced with his father dragging his feet about organising the trip to the 'Berg, he searched for "Cathedral Peak Hotel" on his computer, phoned them and made a booking. The first I knew about it was when he handed the phone to me and said "the lady wants your credit card details"!  I explained to Ralph  that was a bit more complicated than that and that we had to fly to Durban etc etc. 

However, Ralph is not easily deterred by minor details. When we first visited Cathedral Peak 15 years ago, he and Jenny had taken a helicopter flip from the hotel. (I was doing work for the World Bank at the time and had spent days flying the length of the 'Berg by chopper, so this was my treat for them.)  Well, when Sue and Walt were here in July, they took him out for a day to one of the tourist spots where Ralph spotted a rack of tourist brochures, including one advertising helicopter flights from Cape Town to Cape Point. Ralph picks out the brochure, hands it to Walt and says "Tell Daddy to get a helicopter to take us to Cathedral"!!   I had visions of waking up one morning to find a 'chopper on our front lawn.  Needless to say, I am keeping my credit cards well secured.... 

The most amazing event of all however was when I was ill with bronchitis, laryngitis, pharyngitis and sinusitis. Feeling really washed out, I went to lie down and asked Ralph to amuse himself.  The next thing I woke up from my dozing state to hear him clearly spelling out our name and address for an ambulance to come and pick me up because his "Daddy was sick".  He had typed "Constantiaberg Hospital Emergency number" on his computer (spelled perfectly) and called them, I jumped up  and tried to explain to the sceptical operator that I was OK and that it was Ralph who was "handicapped". In my groggy state and with my croaky voice, it took some convincing! When I did explain, the operator said, "Don't you dare reprimand him. Be thankful you have a son looking after you".  So I am indeed being cared for by Ralph, physically and spiritually.

Another incident which I only found out about today, was that a week or so ago he rang the neighbours gate bell. He told them all that had been happening (any story from Ralph is not short!) and then asked if he could stay with them "so that he could be close to his Daddy so he could look after him". Ralph clearly understood point number 3 above very well.  But his interpretation of how to solve it was pure original inventive Ralph. As his sister Sue says, for persistence, determination and innovation, he cannot be faulted! 

This is all part of what the psychologist I am working with calls the 3rd dimension of abilities. So often people ask "what's his mental age"?   Anyone working in the field knows it's a daft question because all these kids have strong abilities in one area and deficits in others.  It's not a liner scale, but at least two dimensional.  Not so, says the psychologist.  It's three dimensional, with the third dimension being the the hidden talents not yet discovered. The real challenge is to find and tap those hidden talents and bring them to the fore.

Another "hidden" talent is his ability to "read" people who will respond to him - within a few seconds.  We have seen this many times, but it was graphically illustrated a few weeks ago when I took him hiking and kayaking for the weekend at Kleinmond. After we (there were 5 of us there) had finished eating, Ralph wandered off around the crowded restaurant (more a sports bar), chatting to people here and there. Withing a few minutes I heard him in animated conversation with someone. I was about to get up to see that he was not bothering anyone, when they came over and said "Hi, Ralph's dad, good to meet you. Ralph's a great chap.  My disabled niece works at Oasis.  Can they get together?"  So we exchanged telephone numbers.  In a restaurant/bar full of people Ralph had found a person who could relate to him and be touched by him. It's an extraordinary gift. 

On that same trip, it turned out that one of the members of the party (lets call him J, who was 51) had had epilepsy since he was a child and had never been allowed to drive.  Ralph immediately reached out to him and got him talking about he fact that he had epilepsy, something he normally never did. In fact, Ralph had a seizure at the start of the walk and J, sensed this before even I did and reached out to comfort Ralph. (Ralph has been seizure free for 10 years but the stress of Jenny's death and the events of the past few weeks have brought them on again. As he has relaxed and settled into his routine they seem to have abated, but yet another worry.)

Hi girlfriend, Jess, who works with him at Oasis is another example.(See pic of her below)  She does not speak, but has the most beautiful expressive eyes. One look at Ralph and he "senses" what she needs and gets up and goes and fetches it for her.  Or perhaps it's just another Heher male reduced to toast by a bewitching pair of eyes

A downside of this extra-sensory "ability" is an extraordinary sense of those people who are hostile or even just unfriendly. Where possible, he just walks away, but if he feels trapped in a situation where he cannot "walk away" he will go to extreme measures to escape - like climbing a 6 foot spiked fence and walking home. Unfortunately this was the situation at Humberstone House wit the new housemother and after 6 months of fruitless struggles, I have removed him and he has been at the Academy for Adults with Autism from 1 Feb. 

Another change has been in his browsing and listening habits. He used to watch the same video again and again repetitively, even though he had access to a wide range of material.  Now he is actively seeking new stuff on the Internet and watching YouTube videos about African wildlife, the Drakensberg and much more. He has unrestricted use of the Internet and finds the most amazing stuff. Am I worried he will access inappropriate content?  I do have access to his browsing history and do keep on eye on it, but never once have I seen him access any inappropriate material. 

Ralph is also showing us all the way he is coping with bereavement. Initially he was carrying on obsessively about "my mother is dead", "my mother is in heaven", etc. He then moved on and looked to the future, and started obsessing about a long list of activities we would be doing together. Every weekend was "booked" from July to December! I made up a list and gave it to him, he countered with his own list, so the principle has been established, now we are negotiating the details. But recently he has moved to a third phase where he can talk naturally about Jenny's death and less obsessively about what he will be doing every weekend.  So he's getting there - in his own time and own way. 

We were on our own last week and I asked him if he's like to go out to supper and if so where?  He choose Spur, where he'd last been with Jenny for his 30th birthday party in May. He proudly showed the waitress his pictures, saying "that's my mommy and she died". The waitress and I were both dewey eyed.  

We still have a long road to travel but at long last I can at least see a glimmer of light at the end of what looked like a very long dark tunnel. .

Keep us in your prayers

Tony
January 2018
 
 
 

 Dinner at Spur 

 Ralph with his collection of photos of Jenny & family
 Ralph's 30th birthday party at Spur, May 2017.  
Opposite him and next to me is his girlfriend Jess. 
This was was just 6 weeks before Jenny passed away.