Isolated but Finally Finding my Feet

Rebecca Shayler-Adams by Rebecca Shayler-Adams Additional Needs

Rebecca Shayler-Adams

Rebecca Shayler-Adams

We are just a typical family muddling along our day to day lives. 4 kids, 1 with autism, 1 with an unknown neuromuscular condition

I had friends I could ask advice on all aspects of parenting, nappy rash, bottles and sleeping etc.

I had a whole social web where if I had a question I knew where to turn.

Even with my son who has autism quite a few people either have a child with ASD or a family member with ASD. So again, I had so many places to turn to discuss my son.

I had health visitors and groups to support me in my journey and I could pass on my advice when needed as well.

Then I was pregnant with my 4th baby.

To start with the same social circles worked. Discussing scans, discussing what pushchair and highchair we were getting.

Then my baby girl was born and within a couple of months, I noticed people started to stop asking about my baby’s development, they stopped saying what their babies were up to, they stopped discussing what toys and groups they were attending.

I started to realise people in baby groups would give me the sympathetic look when their child was rolling or started to sit, while my baby girl just laid there.

It was so isolating. I did still have a couple of people, do not get me wrong, but my whole spider web of help, support and friendship had gone.

I know that people just didn’t know what to say, they didn’t want to upset me or make it seem like they were bragging but I just felt so alone.

I had lost my little circle of closeness, as people thought I had too much on to help them.

They felt like they couldn’t ask me about the fact their baby still hasn’t sat up at 6 months as my baby hadn’t even rolled.

I then started to feel lost, as the appointments got on top of me, when adaptations and different therapies were being discussed.

I didn’t know where to turn, I have an amazing health visitor but she isn’t a ‘friend’ as such.

I didn’t have anyone to go ‘fancy a trip to the coffee house, I need your advice on whether we should start hydrotherapy’.

I just felt like I was treading water and barely keeping my head above the water.

Then I started to google online forums, online help and communities and I suddenly found parents on the same journey, either at the same point in the journey or years down the line.

I found parents who are undiagnosed like us, where we can inbox and discuss how worried we are, or our little achievements.

I found parents with a known condition who just needed a rant at the world as they had encountered strangers who had commented harshly on their children.

I found forums where you could discuss different therapies and different equipment.

I haven’t met anyone face to face but knowing they are there at the end of the internet feels amazing.

I am starting to find my way, I am starting to get my advice web back.

I am finding new people and learning new stories and it is amazing experience that the parents of disability just join forces, are so friendly and are so welcoming.

I am starting to feel less isolated and more like I can take on the world again.

I am so thankful for the internet and for the communities out there, they really are a lifesaver.


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