…A heck of a lot actually. This blog post probably won’t do them any justice but they really are fantastic & I can’t thank everybody who is part of SWAN enough for everything they have done for me and my family.
The nice thing about Swan is that there is always somebody around if you need them. Back in October last year I was worried about Freddies odd jerky movements. The first place I went was over to the Swan support group on facebook to see if anybody else had experience these. So many people responded to me and through their advice we ended up down the hospital with Freddie to get him checked out and we eventually got a diagnosis of epilepsy. Whilst at hospital I received constant messages off swan members checking how me & Freddie were and offering us tons of support.
Having a child who is undiagnosed can be hard for other people to understand. I’ve had comments made to me in the past that Freddie will just catch up or that it can’t be serious if it doesn’t have a name. But neither of these are true and swan is a place where other people understand exactly what having an undiagnosed child will mean. They understand my fears and apprehensions for the future with Freddie and don’t judge me.
Most people won’t understand how much a small developmental step can mean to a swan parent. The future for Swan children is very uncertain. Without a diagnosis there’s no way of knowing if the child will sit, walk or talk. So when a Swan child does something like laying on their tummy for a few seconds or holding a toy in their hand for a few minutes we are all their to celebrate. Small things for most parents but HUGE for a parent of a special needs child. We celebrate every little step on Swan as we all know and understand how important and truely amazing they are.
Having a swan child brings alot of low points but with the swan support group there’s always someone to listen. Somebody to understand and offer advice. Theres plenty of tears but theres always someone to pick you up, dust you down and help you carry on again. Quite often a swan child will end up in hospital, with epilepsy, infections, eating problems, sickness bugs, with an type of problem everybody rallies round and there is always somebody there to offer any support that they need. To help them when they reach their lowest points.
The help and advice I have received from swan has been amazing. Filling out dla forms and sorting out respite can be a nightmare for any family but when the child is undiagnosed it becomes alot harder. But on Swan there is always somebody to help and advise and make the process a bit easier. Having children like Freddie with complex health needs there is a big need for specialist equipment, I asked on the facebook group a few weeks back if anybody could recommend an indoor chair that I could use with Freddie and within minutes I had a list of chairs that would be suitable. Without this advice I would have spent hours searching the internet for something suitable. There’s advice with what meds are best to use, where to get grants from, help finding suitable toys, genetic testing, anything you need somebody will have advice.
Somewhere to belong
Before I found swan I felt so lost and alone. There were support group for lots of syndromes but nowhere for a child who is undiagnosed. I felt like we were the only once going though it. But now I have somewhere to belong so I no longer have to feel isolated. People to laugh with and people to cry with.
Through Swan I have made some great friends, I haven’t met any of them but to me that doesn’t matter. They are people I think are fab and whose children you actually can’t help but care about.
Without swan I wouldn’t be writing this blog, which I hope one day a parent who is in the situation I was in when Freddie was born might come across and I hope I might be able to help them. The blog is also a way for me to deal with my feelings. Sometimes writing every down can really help.
The past 23 months of my life have been incredible hard and I doubt it will get any easier any time soon, but at least I have a totally amazing support group full of fantastic people to help me through it as best they can and for that I am incredibly grateful.