Wednesday, 22 October 2014

I wouldn't change him/her for the world

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.

The school photo scam

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.

Friday, 29 August 2014

The special needs price tag

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 basic. Want a rain cover, you'll have to buy that yourself. Now the buggy might not look basic but all the features are there out of necessity rather than the users convenience. So how much does a special needs buggy cost? As J's buggy was supplied by wheelchair services it's hard to say. However, I did see the price listed as about £1800. Then you need to add on the cost of the additional supports J requires. I don't know how much they cost but we wanted a tray so J could play with toys while in his buggy. We had to buy that separately and just the tray was over £100. You could get a decent buggy for a non disabled children for that much.

So what happens if you want something a bit better than the standard buggy? Well, that's when you find out just how much of a rip off anything with the special needs tag can be. We're an active family and enjoy walks in the local woods. We'd like a buggy that won't rattle J so much he cries and throws up when taken down paths in the woods. I'm not talking about anything too rough. There are some nice walks in the woods that follow nicely prepared paths but this is too much for J's buggy with it's heavy frame and solid rubber wheels. We found a buggy that would be suitable to take round the woods and it even converted into a bike trailer which would be perfect as we also enjoy cycling. It's big and bulky and looks like someone has welded a couple of bmxs together and fitted a bucket seat, but it would work and it would last a good few years. We arranged to try one and it was great. We were and really happy to have found something we could use to get J out and about. The rep got back to us with a quote for the buggy and the extra supports required for J and our hearts sank. The total cost was over £4000. The frame on it's own is nearly £2000 but for me the big surprise was the cost of the extra bits. Some bits you'd think were a necessity like the handles, these were over £200 alone. A cussion for his back a five point harness were over £100 each.

Now I do have a basic understanding of the economies of scale and understand that these things that aren't as mass produced as the branded buggies I referred to earlier. They will cost more but £4000 still seems excessive. If I wanted to take a non disabled child out for a ride in a bike trailer I could get a very nice bike and top of the range trailer and still have enough money left over for a week in centre parcs to use it.

It seems to be the same story with other products as well. You can get stuffed toys that sing or do something when you press a button hidden in the hand or tummy of the toy. You can also buy these switch adapted so that you can plug a switch it so that a disabled child can enjoy the same toy. The adapted toy will usually cost about double the price of the standard toy. I'd love to see manufacturers integrate a switch port into the battery box. The cost at the manufacturing stage would be pennies and would make adapted toys a lot easier to get hold of. It would be a dream come true for a special needs parent to take their child to a toy shop and find a toy they like then take it home and just plug a switch in. It would also make it a lot easier for friends and relatives to buy toys as gifts.

You want to dance with your disabled child at a party? Yep, that can cost you £270 for an upsee.
This is just scratching the surface of the excess cost of special needs equipment. Dig a bit deeper and you'll soon see that pretty much anything special needs comes with the special needs price tag.

Personally, I think it comes down to who usually pays for these things. As the price is so high parents usually have to apply to charities to help with the cost. This means the company's providing the equipment or toys can charge whatever they want. If the product is essential to the day to day life of the user then it will either be provided by the NHS or funded by an organisation with deep pockets. Or if a parent wants something nice for their child then they'll find a way to pay for it. As long as this is the case then the manufacturer or supplier doesn't need to look at ways of, for example, producing a cushion that doesn't cost £100.

We're not in a position where we can walk into a shop and choose from a wide range of products and then choose what fits budget and purpose the best. No, we're usually very limited to one or two options, each with their own astronomical price tag.

Wednesday, 27 August 2014

My list of reasons why it's hard to get along with special needs parents

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:
  1. 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.
  2. 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.

Tuesday, 26 August 2014

The dad I would have been, tried to be and wish I was

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 about going out for the day riding or walking with my son then coming home covered in mud and getting in trouble off the wife. I kept up this dream during very difficult times in hospital after J's birth. After about two weeks in the hospital a doctor took us aside and explained that J would be moderately to severely disabled and may require help for the rest of his life. I heard what the doctor said, but I didn't really listen. I wasn't ready to let go of my dreams and accept the future that was on its way. Back then I was hoping my son would just get better and have a normal childhood.

I would have been a dad that took his son to the park and let him run around. I would have been a dad that got a bike seat and took his son for rides while he was too small to ride himself. I would have been a dad that took his son to play in the woods. I would have been a dad that read stories to his son before bed. I would have been a dad that built a go kart with his son then played with it in the street.

I tried to be a dad that took his son to the park. However there aren't many parks with accessible equipment. We go through the rigmarole it takes to leave the house. Drive to a park with something we know J can access. We wait patiently for other kids to finish on the big swing then get J on it, swing him for a few minutes enjoying seeing him smile and laugh. We ignore the stares from other parents and excuse the ignorance of the other kids who stare a bit more obviously. We get J off the swing and back in his buggy and look around the rest of the park hoping there's something else we can get him on. All the time seeing other kids around his age running around, laughing and playing. We spend a bit more time there pushing or carrying J around, trying him on other things and failing, then when we can't take it any longer, we get back in the car and drive home. We tell ourselves it was worth all the effort for a few minutes of smiles.

I tried to be a dad that took his son for rides. I bought a trailer for my bike and took him out for rides in the woods. This worked for a short time while he was small but as he grew it became harder and harder to enjoy this activity. It soon became clear neither of us were enjoying it so we stopped.

I tried to be a dad that took his son for walks in the woods but the rough ground meant a rough ride for J. We're trying to get a specialist buggy to allow us to take J out and have some comfort over rough ground but they're very expensive. However we have recently found a rucksack carrier that works for J so this is actually working out. Unfortunately he'll outgrow the carrier pretty soon but we'll use it as much as we can until that time comes.

I try to be a dad that reads to his sons at bedtime. M will cuddle up to me and get involved by looking at the pictures and following the story. J will just try to wriggle off my knee making it impossible to hold him and a book. I can only really cuddle J when he's really tired and falling asleep. Good job I like sleepy cuddles. I still read to J but usually only when he's in bed. I've memorised a couple of stories, like the Gruffalo, so that I can interact directly with J during the story without having to keep picking up the book.

Maybe one day I'll build a go kart with J and M but time will tell on that.

After seeing J miss so many milestones of development it really helped me value and celebrate the milestones he has reached. Seeing M waltz through the milestones has really drove home all the ones J has missed. It's great seeing M develop but it's always tinged with a sadness for J. He should be the one teaching his little brother stuff and helping him get in trouble. I take M out now and then and just have fun with him doing normal stuff dads do with kids. You know, the stuff I've discussed trying to do with J. We have a great time together but I always feel guilty about leaving J behind.

There are times I wish I had been stronger. For example J has received presents that really haven't been of any use to him. These have then sat around the house as a constant visual reminder of the thing J can't do or use or just has no interest in. I wish I'd been strong enough to refuse these gifts, they can be such a heavy burden due to the mixed feelings they give you. You're grateful someone went to the effort of buying the gift but at the same time wish they didn't, or wish they checked with you first. Eventually they become part of the house, I couldn't bring myself to get rid of them. If we did get rid of everything J couldn't use then you'd hardly think we had a child in the house. M came along and he started playing with all the toys J couldn't. So while it's great seeing him get pleasure out of them, again it's tinged with the sadness that J never got anything out of them.

I wish I'd been strong enough to persevere with some activities. Giving up is the easy option. Maybe J would've benefited more if we persevered more with his walker or trike. But there's it so much you can put them through as its equally difficult on us. Maybe if we'd pushed a little harder we'd have broke through the screams and heartache and we'd be able to take J on nice long rides on his trike now, or, maybe not.

I love my boys and I'm always looking at ways to involve J in everything we do and want to do. While I may give up on some activities I'll never give up on them.