Insight: My experience fostering and adopting my deafblind son (BSL)

I’m a Deaf woman and a Mum to a teenage son!  He is Deafblind and a BSL user.

I’ve worked with a few Deafblind children in the past, and in the past at some conferences have done some hands-on relay signing for some Deafblind adults. I am not an expert in Deafblindness by any means, but also not totally naive.

I think what many people assume is that Deafblind means totally deaf and totally blind.  Deaf refers to any level of deafness, and blind refers to any level of visual loss, so there is quite a spectrum, and Deafblind refers to someone with some level of hearing loss and some level of visual loss / impairment.

I started parenting life as a foster carer in 2002 whilst also working with Deaf children and doing some consultancy.  I have always wanted to foster and adopt since about 8yrs old, when I started watching the Australian soap Home and Away with my Mum.

I started fostering informally due to a hospital asking me to take care of a child I knew – this wouldn’t happen now!  I was then assessed formerly by an independent agency and specialised in Deaf children, because this ensured that a Deaf child coming into my care, would have access to BSL, and not have any communication barriers.

Like most foster carers, I had my assessment done on a 1:1 basis, and relied on lip-reading for this, mainly because it’s an extremely detailed assessment, and not something I wanted to discuss with more people than absolutely necessary.  However, I used Access to Work for any training and support groups I attended, so that I had interpreters whenever I needed.

My assessment for adoption was very similar to the fostering assessment and because I had a copy of my fostering file, this helped the Social Worker in completing it.  Because I was already approved to foster, I had a slightly different journey.

When I saw my son advertised for adoption, I asked my fostering agency to make enquiries.  The Family Finding Social Worker for my son then read my file and later came out to visit me with my son’s Social Worker.  Apparently about 5 families had made enquiries, but having read my file, they felt I was the right person, so came to meet me.

I had a very long delay getting to Adoption panel, because my DBS was out of date, and it took 13 weeks to be redone!  However, I went to Adoption and Permanency panel in the September and was matched as Fostering for Adoption which meant introductions could be started really quickly, and he could move in.  The plan was that once I had a better understanding of his holistic needs, I could then apply to adopt.

I am profoundly Deaf, a BSL user and have one Cochlear Implant, which I had as an adult.  I use this when communicating with hearing people, but often like quiet at home!

My son is very aware of being Deafblind and is extremely proud of being Deaf and a BSL user.  From about 8-9yrs old, he was able to clarify when things were too small and would ask for things to be made bigger.  As he’s got older, he’s realised things like TV’s are hard to see, even when close, so prefers to watch TV on an iPad, pretty much right in front of his nose!

My son has two cochlear implants, but was initially written off for these, as he was considered to have a profound and multiple learning disabilities, and his hearing loss was total, no response at any level, and no visible auditory nerve.  When he arrived at 3yrs old, he didn’t have any language at all, not even one sign.

I wasn’t entirely convinced at the profound learning disability just by watching him play when doing introductions, which is a period of time spent with the child in their foster home, getting to know them and their routine.  I kept being told he had, however I wasn’t quite prepared for how fast he would pick up language!

2 weeks after moving in with me he had 40 signs!  This in turn meant that when we met his ENT Surgeon after an emergency transfer to his main hospital, he was a little gobsmacked when my son started signing!  I explained that he picked signs up pretty quickly, and as a result, the surgeon decided he needed to reconsider cochlear implants!

My son had one CI at 3yrs old which highlighted just how poor his vision was, as previously he had no hearing at all, so used his vision amazingly well, but once he had his CI, it became much clearer what he wasn’t seeing, so if he was called, he would look up, try and see who was calling, then look back down, if you were out of his visual field.

He has a complex nystagmus, which means his eyes move / wobble.  There are three types, vertical, horizontal and rotatory – complex means his eyes do all three!  He started wearing glasses when he was about 5-6yrs old, which isn’t for distance, it’s linked to helping the nystagmus.

Many people with nystagmus have a null point which means they can move their head into a position, which then stops the eyes moving, but my son doesn’t have a null point.  He can get tired more easily than some people, as he concentrates so hard on what he is seeing.

My son has a high level of support, mainly due to his health needs, however he is now so much more independent.  He attended mainstream school until part way through Year 5, when he then moved to a school for the Deaf.  No sign language or understanding of my son’s medical needs, meant this was not a good fit.

Medically, he is now very stable and totally understands his very complex health needs – and can tell anyone that asks, quite complex things!  He attends an independent specialist school, for children with a physical disability and complex health needs, which he absolutely adores.

My son attends a brilliant mainstream club during school which provides children with 1:1 support, but they have now recommended that he attends without 1:1, alongside his mainstream peers, which means he can choose the days he attends, based on the activities they provide.

We do have carers that are fully trained in order to give me a break, which he is not a huge fan of, as he hates missing out on whatever I might be off doing!

People’s misconception of my son’s ability can be frustrating.  He has been assessed as not having a cognitive learning disability, but due to his complex health needs, people make assumptions that he has learning difficulties and treat him differently.

He has a number of gaps, due to his early childhood experiences and missed huge chunks of school, but he is pretty sociable and likes to hang out with age appropriate peers.

I wish people would stop making assumptions and get to know the Deafblind people they meet, and understand their needs and communication preferences.

If anyone is considering adoption and even with a deafblind child, I would say go for it!  Life isn’t as I expected it, partly due to a description that does not remotely describe my child.  However my life has been hugely enriched by having my son in my life, and seeing him reach his potential.

We have had some extremely scary times, where he has been life threateningly ill.  However I could not be more proud of the young man he has grown into, and his compassion to those around him.

This blog has been written anonymously as part of the Insight series – where readers are invited to share their story or news about their interesting job with The Limping Chicken. If you have a story to share please email rebecca@rawithey.com

Image courtesy of i-stock photos.