So, why is Early Support so important?
Isaac and Joshua
I have 2 boys, aged 3 and 5 both with a diagnosis of ASD. The eldest also has sensory processing disorder; the youngest has allergies, eczema, eating and sleeping difficulties and laryngomalacia (a floppy larynx in simple terms), and both are under the ophthalmic clinic. I spend a lot of time in meetings for the boys, with school, pre-school and medical appointments and so have started to see how Early Support (ES) could really help.
Some excellent things we have seen recently from various professionals include school taking a keen interest in ES, and discussions imminent about how to get really involved and use an ES approach, and pre-school taking difficulties very seriously and working with us to ensure all needs are met by them. We also have a fabulous paediatrician who has even responded to an email by telephoning us, an amazing occupational therapist prepared to visit school and offer them training and an orthoptist who made consecutive eye appointments for the boys. Many of the professionals understand autism and the challenging behaviour that may be seen at appointments, which means we don’t have to explain ourselves.
We really cannot thank these people enough. These are some of the Early Support principles in action, and help us so much, especially when we are exhausted and overwhelmed. A little support goes a long way.
Today however I saw for the first time what happens when it doesn’t come together. I went to an appointment for the youngest about his larynx which causes noisy breathing, and possibly could contribute to his poor eating and sleeping. I was expecting to be told there was no cause for concern.
The appointment was running 90 minutes late – very challenging with a lively, autistic 3 year old. When we finally got into the clinic I was staggered that none of his notes from any other clinics were with his records, and so they were completely unaware of any of his other needs including ASD.
The result of the consultation was that he needs to be put to sleep to have his airway examined and then possibly have an operation. However there are no guarantees things will improve, and of course operations come with a risk. I wasn’t given any options and we have been put on a waiting list.
I left feeling slightly bewildered; unsure of where to turn, who to ask and what to do next and then it dawned on me. How can a decision like that be made with no other input from medical experts who know him like a paediatrician, a dietician, an allergy consultant, a dermatology nurse? And how can we, as parents with no medical knowledge other than our own research, make an informed decision about whether he should be operated on? We can’t.
Early Support suddenly makes complete sense. Working in partnership is vital; consultants are only experts in their own field, so surely the opinions of the others who treat him are essential? We don’t know if his eating and sleeping difficulties are a result of autism or his floppy larynx, or neither of these. Giving us more information so we can make an informed choice is vital.
I get it now. I cannot wait until Early Support becomes second nature to all.