Clinical picture: mitochondrial metabolic disorder, autistic traits
Benjamin‘s parents, Audrey Johnson and Christian Schlaefke, write:
We’ve been back home for a couple of weeks and would like to thank dolphin aid very much for supporting us, providing the donation account and organising the journey.
We are very impressed by dolphin assisted therapy. No miracles happened though and we didn’t expect that anyway. Benjamin can’t speak sentences with several words, even hardly single words. But we noticed many small details. Benjamin’s individual therapy at DHT focused on boosting his perception, increasing his attention, sensory integration, behavioural therapy and interacting with the dolphins as an intensifier for desired behaviour. All this was added by communicative and speech supporting exercises. The sessions on the swimming docks were very tight and regulatory. Both therapist and the little patient have to be focused during the one-hour therapy session, added by preparative measures like brush massage, swinging in a hammock or seesawing on therapeutic balls. They have to put a lot of attention into this.
After Benjamin only joined his dolphin Alfonz screaming, he soon lost his aversion to the big animal and the unfamiliar, dark water. Now they had to work on his perception and attention because he kept on looking around and didn’t join in the exercises. The sensory stimuli, like the above-mentioned brush massage, swinging and seesawing, helped to improve his concentration. The intern often held Benjamin’s head and stabilised his posture. Thanks to this, he made eye contact with his therapist Valerie. She worked with pictograms, pictures and objects to start/support communication. Benjamin had to answer the question for an object on a pictogram or picture correctly. Valerie also practised Benjamin’s articulating, blowing bubbles and stimulated his mouth with an electric toothbrush. As a reward for successfully completing a task, Benjamin was allowed to join Alfonz, resp. Genie in week two, in the water. By the end of the first week already, Benjamin put in more effort and we heard the therapist say “Great, Benny” over and over.
Which new things did we notice about our son? We are convinced by now that he has a pretty good speech comprehension. He brings us the asked for objects on request. When asking if he would like to watch Teletubbies, he takes someone by the hand, walks over to the television and indicates to switch it on. If you say “Wave goodbye” then he waves his hand. If you say bye, Benjamin always says „Ha Hau“, that’s his way of saying goodbye. When Valerie said „Bye-bye Benny“ in our presence, he tentatively said “Babei”. Holy guacamoley! We couldn’t believe what we had just heard. Meanwhile Benny imitates many things: winks, clapping, stomping, jumping (but those are only attempts so far), blowing and sticking out his tongue. He wants to do many things by himself. If you put his sandals in front of his feet, he grabs one’s hand, puts on one shoe and closes the hook-and-loop-fastener by himself. He independently puts lotion on his hands and arms, but washing his hands with soap still doesn’t work that well. He prefers to splash about his hands in the sink. We are very impressed by his initiative and by what is still to come.
On our last day before heading back to the airport, the landlord came to say goodbye. Benjamin even stroked the dog after we said “Benny, gentle, what a nice dog”. He has never done something like this before. But even during therapy we could witness him stroking Alfonz or Genie. We parents were allowed to stroke them, too. It was a very nice feeling.
Right at the beginning we noticed that Benjamin seemed way more content and balanced. You could already sense that after the first session of therapy. He didn’t scream when we sat him in the car or during the ride. The shared time in Florida was very good for all of us. But we also know it’s important to realise DHT’s suggestions here at home. We have to support Benjamin’s perception on a stronger and daily basis. We can achieve this with brush massage and low-pressure simulations. This calms him down and increases his concentration. The parental workshops, which took place in the afternoon, offered us many suggestions as well. We also got many tips and advise on how to deal with his autistic stereotypies. Those stereotypies are important for people with autistic traits. They calm him down and can’t be taken away from him without offering an adequate alternative. So, if Benjamin walks over the manhole cover nonstop, you should turn this into a game and for instance stomp or jump. This calms him down and fosters his sensory perception. If you leave these stereotypies to an autistic person, they can’t do or learn anything useful during this time. This would block them out.
Those good intentions are important, but easier said than done. If you come home from work tired, it takes a lot of effort to implement these intentions.
Now we’re back home and revive the memories of the therapy. Just like we’ve said, we didn’t expect any miracles. We are too realistic for this. But we see that Benjamin got some stimuli he implements at home:
- His dissatisfaction has decreased and his social behaviour has improved
- He is more attentive and increasingly imitates
- He tries to produce sounds, he has a better speech comprehension and understands the meaning of communication
- We received advice on how to deal with his stereotypies and notice that they calm him down to some extent
There are certainly more things we just haven’t noticed yet. Time will tell. But we think that he has made and still will make obvious progress. Maybe it’s a little miracle after all? For this reason, we’re convinced that it makes sense to do another dolphin assisted therapy for Benjamin. We will do everything to make this therapy possible. But for this, we need the help of other lovely people whose donations help Benjamin to see Alfonz or Genie again. Benjamin suffers from mitochondrial metabolic disorder. He also has autistic traits.
Benjamin’s parents, Audrey Johnson and Christian Schlaefke