Over the years I have really shied away from calling myself a "Special Needs Parent". After all, are not ALL children special in one way or another? But the biggest, most glaring reason for this attachment avoidance is the inner knowledge that there is actually no such thing.
There, I said it. It's out there..... the heresy that I live by exposed publicly.
But bear with me a moment, because there is a fundamental reason for finding allying myself with one particular group so unbearable. There is actually no such thing as a "Special Needs Parent". There IS however, such a thing as a parent of a child with special, or additional needs.
Confused? You're not the only one!
But bear with me a moment, because there is a fundamental reason for finding allying myself with one particular group so unbearable. There is actually no such thing as a "Special Needs Parent". There IS however, such a thing as a parent of a child with special, or additional needs.
Confused? You're not the only one!
When I started blogging I quickly became aware of a whole group of bloggers who termed themselves "Special Needs Bloggers". This post is NOT a go at any of them, or even the group. It is however a personal justification of my utter inability to join that group, and a public challenge to the popular misconception that such a group actually exists beyond the nomenclature.
So what ARE "Special Needs Bloggers"?
In a nutshell, Bloggers who do an amazing job of raising the profile of their children's non-mainstream needs, focussing on the differences but also the wonderful contribution ALL children make to our society. Like the truly amazing Hayley Goleniowska, who blogs at Downs Side Up recently writing for the Huffington Post on how wrong Richard Dawkins' opinions are on Downs Syndome and other disabilities.
Sounds pretty cool, doesn't it? So why on EARTH would I have a problem with this?!
Because... there is no such thing as a parent-type for those with special needs children. There are many, many types of children with additional needs and their diagnosis, symptoms and differences should never define them. Because parents the world over parent their children with little thought for labels, and identifying with a group as diverse as this is suffocatingly overwhelming as it is as disparate and inapplicable.
So we come to Myth number 1.
So we come to Myth number 1.
WRONG
Every child is different. Every child has different needs. Some of those needs might be medical, and some might be due to a learning disability, but there is no amorphous group you can join, you child will NOT fit the mould. Sorry.
All children are different even if they have the same diagnosis. I have two children on the Autism Spectrum. Well - currently one with the official diagnosis (been there got the T shirt) and one with a probable jumping-though-the-hoops as-yet-to-be-confirmed potential diagnosis. And I can tell you they are totally, utterly different. Chalk and Cheese. So providing for their needs at school won't be a one-size-fits-all ASD support package.
Whilst many rail against the closure of specialist Special Needs Schools, in many ways it was a fantastic step in a truly progressive direction. It recognised that there was no such cohort as "special needs children" and enforced the concept of "Every Child Matters" within the mainstream environment. It's not perfect, but it shows fundamental respect for individuality amongst children with additional needs.
2) A diagnosis will give you a passport for the future. A membership to a particular group with a common set of symptoms, difficulties, strengths and challenges.
WRONG
You really thought that? Really? Because that would be oh-so-neat. Groups of parents who have similar children with similar or identical diagnoses are truly valuable. They offer support, advice and knowledge. But it's all subjective, and parents need to hang on to that. YOUR child is unique, and you must not allow any prewritten set of rules about the condition your child has define your parenting.
3) God only gives you what you can cope with. So Mums of children with complex needs must be due a sainthood.
WRONG
Whilst there is (bizarrely!) a photo of me on the twins' school website on a school trip with a halo over my head, it was in fact a frisbee. I am as grounded as the next person, and certainly given to the odd sin every now and then. (She says with a glass of wine in hand!) Seriously though, I DO cope, but it's NOT easy. And I fall apart frequently. With style. Mums with children with special needs do not fit a phenotype, we all cope differently, some run, some are in denial, some find a home-based hobby to obsess about - some blog. But we don't fit a genre and are very, very different. And as for God.... don't get me started, but suffice to say I don't believe Job had any more choice than your average sleep deprived Mum of a child with a chronic health condition, and neither would have jumped at the chance to live that way. We do what we have to, what we can, and collapse in an exhausted heap at the end of the day.
4) You can always tell when a child has additional needs, or it's an excuse for poor parenting.
WRONG
I shouldn't have to list this one - but you'd be surprised. With programmes like Holby City airing ignorance about hidden conditions it's no wonder Joe Public has such a hard time of it. Sadly, you can't. If you could, we would hardly need hospitals and X ray vision would replace most common place testing and children would be issued with a futures projection at birth. Groups like SWAN (Syndromes Without a Name) would cease to exist as everyone would SEE what was wrong. Don't let anyone convince you all disabilities are visible. They are not. And your assumption to the contrary brings acute pain and isolation to those on the receiving end. Every. Single. Time.
5) Parenting a child(ren) with special needs is always tinged with sadness.
WRONG
Actually, this is utter rubbish. If you haven't read my Blog before, I urge you to do so. We as a family are certifiably nuts, living on the edge of normal much of the time with a warped sense of humour to see us through the worst times. My kids ROCK, and sadness is usually only present in my most melancholy moments when I'm deprived of sleep in the small hours. No. Actually that's resentment.
Life is what you make of it - I consider myself hugely fortunate to have four children who excel at many things, and make me laugh on a daily basis. Usually for a good reason too...
6) Yeah. There is a 6. And no, it's not in the title.
Because however much I would like to differentiate myself and my family from any wider group I can't. The Special Needs community are a wonderful, diverse group of individuals with very different needs. But exist they do. With the likes of Richard Dawkins and UKIP seeking to persuade us that disability is an option the power of the Special Needs Community is truly significant. And this is precisely because it has no defining membership criteria. There is no written law, or future prediction which precludes YOUR potential membership from this community - and this is precisely why WE matter. We are all human, we all have needs and not everyone can be a round peg in a round hole. I hope you and your family can conform to the society in which we live, fit in and belong. But for the day that you might not.... remember.
We are PARENTS. Not SPECIAL Parents. Just Parents. Not different, not special, but parents of children who don't always fit the mould. Children who break free, children who reach for the stars in a different way.
Amazing children.
2) A diagnosis will give you a passport for the future. A membership to a particular group with a common set of symptoms, difficulties, strengths and challenges.
WRONG
You really thought that? Really? Because that would be oh-so-neat. Groups of parents who have similar children with similar or identical diagnoses are truly valuable. They offer support, advice and knowledge. But it's all subjective, and parents need to hang on to that. YOUR child is unique, and you must not allow any prewritten set of rules about the condition your child has define your parenting.
3) God only gives you what you can cope with. So Mums of children with complex needs must be due a sainthood.
WRONG
Whilst there is (bizarrely!) a photo of me on the twins' school website on a school trip with a halo over my head, it was in fact a frisbee. I am as grounded as the next person, and certainly given to the odd sin every now and then. (She says with a glass of wine in hand!) Seriously though, I DO cope, but it's NOT easy. And I fall apart frequently. With style. Mums with children with special needs do not fit a phenotype, we all cope differently, some run, some are in denial, some find a home-based hobby to obsess about - some blog. But we don't fit a genre and are very, very different. And as for God.... don't get me started, but suffice to say I don't believe Job had any more choice than your average sleep deprived Mum of a child with a chronic health condition, and neither would have jumped at the chance to live that way. We do what we have to, what we can, and collapse in an exhausted heap at the end of the day.
4) You can always tell when a child has additional needs, or it's an excuse for poor parenting.
WRONG
I shouldn't have to list this one - but you'd be surprised. With programmes like Holby City airing ignorance about hidden conditions it's no wonder Joe Public has such a hard time of it. Sadly, you can't. If you could, we would hardly need hospitals and X ray vision would replace most common place testing and children would be issued with a futures projection at birth. Groups like SWAN (Syndromes Without a Name) would cease to exist as everyone would SEE what was wrong. Don't let anyone convince you all disabilities are visible. They are not. And your assumption to the contrary brings acute pain and isolation to those on the receiving end. Every. Single. Time.
5) Parenting a child(ren) with special needs is always tinged with sadness.
WRONG
Actually, this is utter rubbish. If you haven't read my Blog before, I urge you to do so. We as a family are certifiably nuts, living on the edge of normal much of the time with a warped sense of humour to see us through the worst times. My kids ROCK, and sadness is usually only present in my most melancholy moments when I'm deprived of sleep in the small hours. No. Actually that's resentment.
Life is what you make of it - I consider myself hugely fortunate to have four children who excel at many things, and make me laugh on a daily basis. Usually for a good reason too...
6) Yeah. There is a 6. And no, it's not in the title.
Because however much I would like to differentiate myself and my family from any wider group I can't. The Special Needs community are a wonderful, diverse group of individuals with very different needs. But exist they do. With the likes of Richard Dawkins and UKIP seeking to persuade us that disability is an option the power of the Special Needs Community is truly significant. And this is precisely because it has no defining membership criteria. There is no written law, or future prediction which precludes YOUR potential membership from this community - and this is precisely why WE matter. We are all human, we all have needs and not everyone can be a round peg in a round hole. I hope you and your family can conform to the society in which we live, fit in and belong. But for the day that you might not.... remember.
We are PARENTS. Not SPECIAL Parents. Just Parents. Not different, not special, but parents of children who don't always fit the mould. Children who break free, children who reach for the stars in a different way.
Amazing children.