Additional Needs

Special needs parenting: Finding support

Posted by Naomi Aldridge on 7th June 2021 Additional Needs, Advice & Support, Disabilities

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When we first started our journey and Ethan was diagnosed, we headed up to a special appointment which was filled with all different specialists.

They all had previous knowledge of his genetic disorder and we were told that they would be able to share their knowledge with us and give us more of an insight into his disorder.

We were so excited because we had no idea about this rare genetic disorder.

We didn't know what the future held, how Ethan would be able to progress with it or how long we would even have Ethan with us.

There is little to no research available online so all we were going with was a piece of paper with lots of coding on it.

After a mission to get to the hospital after severe flooding we made it and entered the room full of at least 15 specialists.

All in a big circle staring at us.

The meeting began with us introducing Ethan.

Then they proceeded to tell us about his condition, only there wasn't much for them to tell us.

We were met with a room full of silent faces.

They told us there were a few cases of children being diagnosed with his disorder but there wasn't much they could tell us as they had either passed away or they hadn't met them.

They told us that Ethan did present with all the symptoms of someone with ARX and that if we could keep him well that would give him more of a future.

That was it. No other advice, no thoughts on developing, no thoughts on the future, nothing.

Going into that meeting as a new parent who was being opened to a world of disability and a rare genetic disorder I was relying on the professionals to help us and they didn't.

I didn't know what questions I should ask or what we should be pushing for for our son.

Since that day I have learnt that you need to speak up, you need to constantly ask questions about everything, do your own research over tiny things and ways you can help your child. I have learnt so much from other parents and that is how I know what we know today.

There is so many twists and turns on this journey.

Having other parents there to help us and tell us things the professionals don't tell us is so incredibly important.

I often get thanked by new parents when I've told them they are eligible for something or they can access something they didn't know about, but the truth is, if another parent hadn't told me I wouldn't know either.

I think it's so important that we help each other out.

There's no point keeping tips tips information to ourselves.

Sharing the love not only helps our families but other families as well.

None of us will ever walk the same walk but all our paths will cross and its important to help and support each other out.