I am acutely aware that I don’t talk much about Gilbert’s albinism on the blog. It’s not because I think it doesn’t merit more attention – it does, it deserves much more focus than it currently receives here.
But it’s hard to dedicate equal time to his separate albinism and autism diagnoses when it seems the needs of one are consistently more demanding than the other.
It’s the dilemma of the dual diagnosis. How can you equally deal with the needs of different, complex and sometimes opposite diagnoses?
Gilbert’s life has, to this point, been separated into 2 halves. The first 4 years was all about his albinism. We concentrated first and foremost on his visual needs and undertook intensive early intervention to expose him to the sensory experiences he tended to avoid due to his vision impairment. He also went on to attend preschool at RIDBC Hunter where his visual needs were met first and foremost.
We helped him get used to his first pair of glasses at 11 months of age, although it took over a year to get him to keep them on for more than the briefest time. We concentrated on his skin, experimenting with sunscreens to protect his delicate skin from the sun and training him to keep on a hat and wear long-sleeved shirts all year round.
Since he received his autism diagnosis we have spent the last 4 years dealing with all that an ASD diagnosis entails. We have attended countless occupational therapy and speech therapy appointments to address his sensory needs and to help with his initial speech problems. We have also seen counsellors and psychologists in a bid to help him better cope with stressful situations and manage the triggers for troubling behaviour.
We made the tough decision to take him out of preschool at RIDBC and instead enrol him in an autism specific class at ASPECT Hunter so we could get him ready for school. This year, after 3 years at ASPECT, he finally made the leap to a mainstream classroom and we couldn’t be more proud at how well he has handled this challenge.
Looking back it was an extremely difficult decision to change the focus of our early intervention 4 years ago. On one hand we knew that we needed to focus on his autism before starting school. Yet on the other hand we also recognised that we could not continue with the same level of assistance for his vision impairment. It honestly felt like Solomon’s choice, where no outcome was going to be a good one.
So in the intervening years we have done what we can with what we’ve had. We have never completely ignored his vision needs – he still sees an opthalmologist regularly and we are clients of Vision Australia, who have helped us so much. But we have never been able to completely focus on his visual needs since his autism diagnosis which has troubled us deeply.
This year he has received itinerant vision support at school and we found ourselves, for the first time, in a position to deal with both diagnoses at once in a single education environment. Up until now, it seemed as if we always had to make a choice, one way or the other. But now things are slowly, but surely, falling into place.
This term we will be undertaking more assessments to see where his vision is right now. We’ll be assessing his readiness for using adaptive technology in the classroom as he is struggling with the strain of trying to read and write the traditional way. We’ll also commence visual scanning training to improve his mobility and coordination in unfamiliar environments.
He’s also going to start in a small social skills group with other boys of similar age. Of all we are beginning this term, this is going to be the real test for him as he is not comfortable in group settings. But I think our willingness to give it a shot shows how far he has come this year and our growing confidence in his ability to cope and adapt and progress.
This term is going to be a big one in many ways as we inexorably march to the end of the year and start preparing for next year. It’s going to be tough but I think we are finally getting on the right track. For the first time I think we’re close to getting the balance between the two diagnoses right.
I sure hope we are, anyway…