Confessions of a Shopaholic, oops that’s another story, I mean Confessions of a Special Needs (SWAN) Mummy….
(Hubby, please bypass this paragraph it is not for your eyes 👀). Well if I am honest having a Special Needs Child and being a Shopaholic seem to go hand-in-hand for me, for if Dylan is having a good day, to celebrate, I shop 🛍 and if Dylan is having a bad day, to compensate, I shop 🛍. The fact is I shop full stop 🛍🛍 and the fact that I can do it in person in a shop, online at home or on the go from my smart phone at the hospital is just a bonus 🛍 😉🛍 24/7! Fact shopping is therapy.
One of the ‘greatest’ things about being a ‘Special Needs Mummy’ is that it has taught me to become the person I am today. A Selfless, dedicated and hardworking mum who values every single moment of every single day.
Life is a gift but Dylan is the biggest gift *albeit in the smallest of packaging with no label!
I’ve heard so many cliché statements over the years I thought I’d share with you my ‘Top Five’ I am sure other Mum’s! (Parents!) of Special children can relate to this…..
- ONE: Special Needs Mums are always asked “How do you cope?? I couldn’t……” 😩
Firstly yes you would!! You would have to, just like I have to. There’s very little choice in the matter. You may think I go above and beyond the call of duty for my special little boy but I only do what is needed to keep him well, happy and here.
Anyone that says they couldn’t cope obviously doesn’t have to.
I often hear….
“I haven’t slept because my child was (delete as appropriate) teething/being sick/has a cold” (etc. etc.) In fairness if I was to only have one interrupted sleep, I’d feel rotten the following day too. But the reality is I haven’t had a full nights sleep in almost six years……. It’s normal in our unconventional lives
- TWO: Special Needs Mums are always told
“You need to look after yourself, you need to be well to look after your child……” 🤒
Never had a true word been said, and in theory a walk through the park but in reality it’s a marathon and there really isn’t enough hours in the day to put yourself first. For when the 24 hours in a day are dedicated to caring for your sick child, us mums tend to slip on to the back burn. *tends to be a slight juggle when a Special Needs Mum has her own health problems.
We would all love a weekend trip to a Spa once a month or even once a year (*once a decade or even once in a lifetime would be more like it!!) but our kiddies come first. Period!!
- THREE: Special Needs mums are always asked about………. Siblings and “How does ‘she’ cope??” 🤔
As a parent you want to give equal attention to all of your children. In my case two. But when you are blessed with one ‘Special‘ one and one equally as special but her needs are purely of wanting sole mummy attention, this can be hard (*back to my juggling act). As a Special a needs mummy when their non special needs child is a capable, clever and intelligent ten year old you expect them to do a lot of mondaying tasks but when you realise the tasks in hand are to pass the oxygen and help comfort sibling following watching mummy give home injections, the tasks are not too mondaying after all. It does feel like there is never enough of my attention to go around. No matter how many trips to ‘Smiggle‘ we do!! On the plus side she gets unlimited iPad time whilst I’m on phone to endless Doctors, Nurses and Therapists!!
- FOUR: Special Needs mums would have been asked along their journey
“If he doesn’t talk, does he sign” NO! “How do you communicate with him??” 🙄
Communication, or lack of it in our case is starting to get frustrating. Frustrating for our son who at nearly six years old is still babbling the same six sounds he’s been saying for almost four years. Cognitively, not able to sign, yet fully aware of what he would like to ask for. He finds other ways of asking, pointing, grunting, crying, changing tones in his voice, laughing when we get it right and pushing away if we get it wrong. Frustrating for us when when we don’t get it correct first time.
People automatically assume communication by speech is natural, and generally it is. But in our home it’s not so we have to find our own way to communicate.
Special Needs Mums have to learn to understand their non-verbal children. It’s just another part of the job!
- FIVE: This one only us SWAN Special Needs Mums will have heard……
- “What do you mean ‘he’s’ Undiagnosed??”
- “When will ‘he’ be Diagnosed??”
- “How does it make you feel ‘him’ being Undiagnosed??”
And only a SWAN mummy can answer……. 😳
Without a diagnosis life can be very isolating. Families often feel like they don’t ‘fit in’ and without a diagnosis it can be very difficult to answer questions about their child. They don’t know what the future holds for their child – Will they walk? Talk? What will their life expectancy be?
It’s been a long journey for us a family coming to terms with Dylan not having a diagnosis. I’ve been through lots of grieving stages for the child Dylan isn’t.
- Denial, he will get better, it’s just a blip, the doctors don’t know what they are talking about (all of them!)
- Anger, why me, why Dylan, why us, it’s not fair (*throws dolls out of pram)
- Depression, fed up, can’t carry on, peers all continuing in their ‘normal’ path whilst Dylan is stuck in the mind and body of a baby.
- Acceptance, realising we have been blessed with ‘THE MOST’ amazing little boy, one who is unique, a tough little fighter, who is incredibly handsome, very determined, extremely long and happy, a little boy who just takes whatever life throws at him with a pinch of salt. Accepting we are the luckiest parents alive to have been sent this little angel who has make us the strong loving parents we are today. Realising Dylan puts the ‘Special’ in ‘Special Needs’.
Did you know six thousand children are born each year with an Undiagnosed Genetic Syndrome. Undiagnosed Children are known as SWAN’s. (Syndrome Without A Name)
SWAN is a term used to describe disabled children who are thought to have a genetic syndrome or condition that doctors have so far been unable to identify.
SWAN is not a condition, it is not a diagnosis and it does not refer to one specific syndrome or condition. In fact, the reason that many children remain undiagnosed is because it is highly likely that they have a very rare syndrome or condition.
SWAN is a lifeline to hundreds of families like ours. To raise awareness for Undiagnosed children, like Dylan, this Friday, 29th April is Undiagnosed Children’s Day. It is a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK, the only dedicated support available in the UK for families of children with undiagnosed genetic conditions.
So after almost six years of Why, What, How questions we are retired to the fact that Dylan may never get a diagnosis. Even if he was diagnosed it wouldn’t change the daily care Dylan requires. It would be so rare & wouldn’t make Dylan better or change his life expectancy but it may help others in the future which is why we will continue with Genetic studies.
And so he writes the story #dylansstory
Follow us on Facebook Dylan’s Story