Failed at Napping

I see this line all too often in peoples blogs referring to their special needs child. It has to be the most ridiculous thing a special needs parent would say. I see my son struggle everyday. He can't sit up never mind stand or walk. He can't eat and is tube fed. He can't communicate and gets frustrated a lot. Would I change him if I could? Of course I would. If I could magically take away his cerebral palsy and give him a chance of a normal life I would. Without hesitation. That doesn't mean I love him any less for who he is now. He's amazing, he's determined, he's stubborn, he's loving and he's my son. All I want is the best for him. All any parent wants is the best for their child and those who say they wouldn't change them for the world need to think about what they mean by that.

It's that time again. School photos. Great yeah? No. I've got a camera, I'm perfectly capable of taking a photo of my sons. I take lots of phots and keep the best. I've got loads of great photos of my sons. So why do I need to sit my son in front of a stranger with a camera for 10 seconds, hope he is willing to smile then pay twenty odd quid for a few photos that aren't even that good? At least these days we get a choice of photos, we can either have sinister or serious. Not smiling or happy or laughing. When none of them are great, I'm not paying out for them. I not going to spend money on photos I don't want just because it's his first school photo.

Have you ever looked at the cost of special needs equipment verses the cost of similar equipment for non disabled people? Unless you have reason to then probably not. Let's start with a buggy. Is there a 3 year old out there that doesn't ride in a buggy? Ok there probably is but they are in a tiny minority. So what do you pay for a buggy for a non disabled children? Well you can get a decent, lightweight branded buggy that will give your child a comfy ride for £100-£150. You'll have loads of choice with that much to spend. Want a full travel system then you can be looking at around £500-£600. Again you'll have plenty choice and be looking at some of the top brands with loads of features to provide comfort, convenience and it'll probably fit in the boot of a standard car. Now, let's say you need a buggy for a disabled child. It's a whole different story. Fortunately our local wheelchair services provides a basic buggy. And when I say basic I mean bas

Lists. The internet loves lists. I've just read a list on the internet. It was 15 reasons why it's hard to get along with special needs parents . As I lack imagination I figured I'd make my own list of why we're hard to get along with. Here goes: All our fucks are reserved for our kids. Don't expect us to give a fuck about you, the score of some football match, what happened on tv last night or any other trivial matter that may have some significance to you. We don't sleep. We haven't slept properly for years. This means we're grumpy beyond measure. There you go, that's all you really need to know. If you can live with that and are still part of our life then you're probably a special needs parent yourself.

It's 5am and I've been awake for about two hours now. During this time I have cuddled J back to sleep and dealt with a seizure and I'm now wide awake with no hope of getting back to sleep. I've read an article a friend linked to called  The Mom I Would Have Been . This has inspired me to try and write down my take on being a special needs dad. We've got two boys, J (5) and M (3). J had a difficult birth and has been left severely disabled as a result. He has quadriplegic cerebral palsy. M is "normal". I work full time leaving my wife at home as their mother and full time carer. While my wife was pregnant people would ask if I knew what we were having. We didn't know but I stuck to the old cliche that I didn't care as long as he/she was healthy. Deep down though I knew I was hoping for a boy. I'm a big kid myself and enjoy mountain biking and generally anything that involves being outside getting covered in mud. I used to daydream ab