Chromosome disorders and their diagnosis on your child are a lonely and isolating event, as a Dad you must stay strong, keep it together, maintain that stiff upper lip and keep the ship steady, or so we are told by society. Reality is somewhat different, your children and your family are your world. Never fear shedding a tear for them, be it pride or pain they are worth every last one and never be too proud to show it.
As part of Rare Chromosome Awareness Week I was asked by Unique-The Rare Chromosome Disorder Support Group (www.rarechromo.org) to republish the blog post below from last year as part of their awareness campaign. The post was originally published on my blog “A Dads View of 15q (www.dadsviewof15q.wordpress.com)” and relates to the little things I picked up on in the first few years as a parent of a child with a rare chromosome disorder.
Just over 12 months on from the blog below, much of what was written remains true and our son Matthew remains a little whirlwind of fearless energy who lights up the room. As part of our understanding of rare chromosome disorders, support network and the ultimate acceptance process, I can say without hesitation that Unique have been integral to our journey so far and a charity who have been invaluable to us and many other families across the country.
Brief Observations Two Years on…
This week is exactly two years on from that first experience of the crushing pain you feel in hospital when you get news you don’t want to hear. A lot of water has passed under the bridge since we were sat staring at the walls of the children’s ward, dazed and confused for the best part of 3 weeks and I have learnt a lot about myself in that time and a little bit about being a “special needs” parent and the stuff that crops up.
- Diagnosis day hurts! – More than a firm kick square in the b******s! Nothing quite prepares you for stuff like that and the sheer scale of that moment. Those two days (the initial West Syndrome diagnosis and subsequent IDIC15 a few months later) will forever be etched in my mind, the waiting, the room, the pain and the sense of bewilderment and a million questions that follow. That initial pain does subside and a sense of “normality” does follow, it has to for the sake of your family.
- Don’t be afraid to ask! – I would rather someone be educated and aware of chromosome disorders and related topics such as autism than stand there and judge, assume or ignore what is going on around them.
- Don’t be embarrassed! – If you do ask and I explain, don’t be embarrassed when I answer, there is nothing to be embarrassed about! Yes, Matthew has a rare chromosome disorder, he is non-verbal, he has habits and quirks that some may find strange, but heck haven’t we all?! I have seen a grown man attempt to slyly pick his nose and eat it in a business meeting, now that is strange! That is the way he is and we love him, we are not ashamed or embarrassed and no he is not a burden, with the journey that little superstar has been on we are mega proud of him.
- It is OK not to understand! Before we were parents to Matthew and thrown head first into the world of special needs parenting, I didn’t understand either and we won’t judge you if you don’t. Autism was a mystery as I have said in other blog posts, we had never encountered it and I accept you may not have either, so back to points 2 & 3.
- Pity at your peril! – This is as bad as a judgemental sneer, we do not ask crave nor want pity from anyone, it is patronising, offensive and quite frankly it sucks.
- That judgemental sneer? Don’t even think about it!
- Yes Matthew shows autistic traits. No he is not like Rainman – he is Matthew, nor have we found his “special talent” (Refer again to points 2 ,3 & 4).
- Parenting advice on Matthew? Give at will, we will probably smile politely and file in a mental bin with the statements from point 7.
- Our social life is dysfunctional! Yes we would love to go out for dinner, join friends for drinks and all that jazz but sometimes it is not that simple! Keep us on the invite list though, you never know, we may be able to make it! If all else fails then maybe pop in and do the social thing with us – the door is always open (well actually it’s not, as Matthew would be off down the street, but you catch my drift).
- You think your house is toddler proof? Matthew and your house contents will be fine if we visit!? You reckon? Five quid says he proves you wrong in the first 10 minutes! Back to point 9, sometimes it is just easier to come to us.
- Matthew’s hospital file! This thing is big, like really big, weighs a ton and probably requires a risk assessment for lifting and carrying to be carried out every time it is brought out of storage.
- Never, ever run out of tomato ketchup!
- Or pitta bread, pizza, leftover and frozen lasagne/pasta, petit filou or fruit pouches!
- Doors, wheels, musical toys and water! A godsend (except the doors which are a hazard) in their own right, each have a magnetic attraction and keep him happy for hours.
- That kid knows no danger! This is not just normal toddler danger, I have seen toddlers do their thing before, we have raised two and been scared to death at times, but this kid knows no bounds. (Oh, and since starting writing this blog post the little monster has discovered how to escape from his cot!)
- He never stops moving! A bit like point 15 in that this is not like typical toddler energy, when he is awake he is moving, exploring and trashing one or more rooms in the house.
- Hand dryers are the work of the devil! Seriously, although they hardly create the heat of Lucifer’s lair, the noise and roar is obviously like the depths of hell! The mere sight of one will lead to thumbs thrust immovably into ears and one overloaded kid.
- Meltdown imminent? Give him some space. It is not that he dislikes you, nor is he being rude or naughty, he is overloaded with sensory stimulus and needs his safe place.
- Special siblings just get it! Our daughters – They have a mutual bond, devotion and trust with him that cannot be broken, they see him just as their little brother, Matthew, nothing more and nothing less, the support they offer is amazing, these kids seriously rock!
- Little things matter! A smile, eye contact, a cuddle, a milestone met or inched towards, a new action, noise or non-verbal communication are all massive and greeted with excitement.
- Other special needs parents are amazing! Amazing, inspirational, welcoming strangers who have become friends.
- Finally – If you get attention cherish it. Now it’s not that Matthew isn’t affectionate, he is, very much so. He is just selective over who to, where and when, so don’t be offended if he avoids you like I would a plate of quiche! If you do get those special moments, embrace them, trust me, it’s worth it.