Our journey began in London where both Fred (who has a severe visual impairment) and Eva who is six in the summer, were born. Fred being a second child I was pretty relaxed about the six week check. Yes he is feeding, yes he is growing…but I did have a niggling worry about his eye focus. Our GP listened and shared my concern about his wobbly eyes and then BAM!
The wheels were set in motion. Roller coaster ride begins!
The next day we were seen at the UCH eye clinic, the next month we were seen at Great Ormond St (GOSH) for an initial diagnosis, the month after, an examination under anaesthetic (EUA) at Moorfields where he was registered as severely sight impaired (SSI) and with an informal diagnosis of F.E.V.R. Basically folded retinas across the middle of both eyes. Acuity 3/60. We left with a mixed bag of emotions; along with a very heavy Early Support Journal and a space blanket!
Yes being told your child will never see like you or I, is devastating. Personally, it completely stripped me of everything I thought I knew about myself and this little babe in arms. But a quick diagnosis, an honest (scary) medical explanation, and being seen by the best health profs within 3 months PUT us back on track. Yes a different path, one that I never envisaged we would be on. I have been fortunate to share this journey with the support of a couple of fellow mummy friends who have children the same age.
Without their unconditional love, understanding and continuing support we would not be where we are today.
We mourned the child we thought we had and began to get to know ourselves and this little bundle of wobbly eyes a bit better. The point is that the quick diagnosis meant that we not only had health input, we had been referred to a KIDS children’s support group and Eva qualified for the under two funding so I could get some much needed time with Fred. BUT looking back there was one omission. What about a parent’s learning and education needs? Google is not a substitute. It’s a scary place. Luckily (in my post diagnosis daze) I had wandered into to the RNIB which happened to be round the corner from where we lived at the time. Where I received fantastic information and support, and enrolled on a course for Visual Impairment for Teaching Assistants called Partners in Learning. I was the only parent (but I would encourage parents to enrol) and it was so useful on so many levels. Learning, sharing and realising there is a whole big knowledgeable world out there full of people that want to help. I was on and still am on a mission for info and knowledge.
So within 6 months of Fred’s diagnosis we had a foundation of integrated early years building blocks in place, to help rebuild our life. The next level is looking solid as we have just heard that we will have a full time teaching assistant who is a braillist with his Education and Health care plan to support Fred on his journey onto school.
When people see Fred they often comment on how well he is doing. He is, we are, and that is because of the early support and intervention we have received and continue to do. A plea. Don’t use a child’s success to reduce support. Keep it up! What keeps me going is the web of personal and professional support we have.
Nothings beats a bit of parent to parent support.