Wasn’t sure if I should write this post, never mind publish it. I thought I can’t be the only one who has been in this posistion before .
To most of you, yes I know I don’t have to justify how I spend my money, the people who really need to read this won’t because the truth is even if I sent them this way, they don’t care.
Like most parents who look after a child with additional needs, we claim dla for Z, this doesn’t make us ‘rich’ far from it. Z isn’t some sort of money making thing, he isn’t worth a lot to us because of money, he’s worth a lot to us because he is Z. He’s our child, someone we wanted long before he arrived. He’s not even a ‘mistake’ not saying all mistakes are unwanted! But he was wanted, we had to go through a lot to be given a chance, same as everyone else who’s gone through ivf.
It’s been asked is my new car because of the money we get for Z, the answer no, it’s coz my husband goes out to work 6am till 2-45pm, and back every other week 6-8pm. Him going out to work five days a week are the reasons why we can do things, I still have my 2 part time jobs too. No, he’s not on loads of money and we’re not rich. I needed a new car to keep Z’s buggy in, bigger he’s getting and a little picanto just wasn’t doing it so for his safety it was time for a new car.
Dvla allows me to take Z places that maybe other wise I wouldn’t try, it would be money I couldn’t really justify spending if he couldn’t cope, dvla allows me to do this, to try new things. It also allows me to get Z the things he needs, I’m not saying the things are expensive like numbers letters and playdoh, but other things are, iPad chargers are one thing! Like other parents we go through so many iPad chargers, because Z doesn’t understand. Hearing from people with older children on the spectrum they still don’t understand. Then the iPad screen cover , ok it can last a while but we can go through a few every so weeks, this is still cheaper than a new screen.
Nappies and wipes, are other things that you wouldn’t still be expecting to buy at four, vests with poppers being another. He needs these for the winter. Have you seen the price on these? Your looking at roughly £8 for one. Same goes for all in ones, if you want the feet in them £15. You could say you don’t need them, but if Z had a dirty nappy at night and we didn’t know, because he can’t tell us, where and what do you think would happen? It would be smeared everywhere, so I’ll pay the £15 for poo free walls!
Z is spoilt I’ll admit it he was before the autism, when he just had a speech delay we would buy things to try to encourage him to talk. There’s others out there who are just as spoilt!
Certain foods he’ll only eat, there was a time that all he would eat would be McDonald’s chips. It’s not as simple of saying well if you didn’t take him he would eat something else, no he wouldn’t he would have starved.
It allows us as a family to try new places, like when we went to the farm a few weeks back, we lasted 2.5 hours that’s not a long time but that’s all Z could manage, and 2.5 hours is a long time for him.
Sensory toys are stupidly expensive, the same as every thing if it’s aimed at a disability, because the sellers know us parents will pay it if our children need it.
The money I claim goes on Z, we were always out before he stated school, swimming lessons he was having, alongside drum lessons he’s still having. Ok it also helps keep me in coffee! Of course when your up from 3am a lot of the time you can get through 4-5 coffees before work. I call it an essential, something I need to function. Sometimes it may also buy me a bottle of vodka! Know that few weeks of 3 am wake ups, meltdowns from hell and not going to bed till 10, then a glass of vodka with your mate is actually needed!
Would I trade my dla for a 4 year old who could talk, wear pants, sleep through the night and not get up at 3am, or even went back to sleep because they understood that it was still the middle of the night and not time to get up. For a 4 year old we could take anywhere an not worry how long we would be out, not have to worry if we needed to take the buggy, the iPad the headphones, a change of clothes, nappies leak, basically were still carrying a baby changing bag, just without the bottles. There are others out there like me who still carry the bottles. * Would we give up all the money for this, I’m sure everyone would say yes. For a ‘normal’ 4 year old.
Or rather would you trade your child who ok will have a few tantrums because all children do. Have to remember all what I’ve said above when going out, worrying about where you would change your child’s nappy because those baby changing facilities are aimed at baby’s. All this on maybe 2-3 hours sleep if your lucky. Then find somewhere where you can go out for a family meal but your always on the timer because you don’t know how long the iPad charge has left, or if that screaming child is going to set your child into sensory over load. Them are to scared to go away because your not sure how the change of routine will affect the next weeks sleep? Think of the things you’ve done with your child this past few weeks, would this be still be possible for Z?
* There’s most probably loads more ‘things’ I’ve forgotten because they are just normal to me now.
Hidden costs to autism.
I hear you! It’s awful that we have to justify why our child NEEDS things, yet we still do. It’s so infuriating. I’m currently looking into reassessing my son’s DLA, as he’s getting more expensive as he gets older, pull ups for one. Hold your head up high lovely xx
I’m guessing the older he gets the more his needs will change, but then maybe the person won’t even be around to notice
You are entitled to DLA for your son, to help him and it’s sad in this day and age you have to justify yourself to anyone as with autism he obviously has special educational needs
Thanks! Yea shame others don’t see the same!
It’s so sad people make you feel you have to justify the benefits you are entitled to. You do a wonderful job of raising awareness xx
Thanks, I think a lot of it is jealously to be honest, it’s just a bit bad when it is said as your using your son for money!
I think you are amazing. Children with special needs are expensive. My niece is saving for a car seat, it costs over £450 but she needs a larger one with the 5 point harness. She may get help from a charity but then again she may not. Either way if she wants to take her son in the car she has to buy the special car seat. Nappies and all the other essentials are expensive too and as they get bigger are more expensive. I take my hat off to you. Ignore the ignorant and hold your head up high
Shame it’s actually the inlaws so can’t completely ignore them ! They don’t see any of this, just that Z goes here and there and has this and that!
Even more reason to ignore them. They should know better.
I feel so sad that you have had to write this to justify yourself. You don’t need to justify anything. You both work to support your lifestyle and the extra money you receive is because you are entitled to it and Z needs it pure and simple. I’m the first to be grumpy about people who claim benefits who shouldn’t but that definitely doesn’t apply to you. I feel sad that people you know think your son should go without things he needs and that they are so ignorant about his condition.
More so ‘coz it’s family. There has to be others who feel this way too. It’s a sad society when people are jealous for money.
Awwww you are awesome, ansd although I agree, you shouldn’t feel you need to justify yourself, you still need to vent when people make assumptions about your life. But all in all, people should mind their own business! You rock x
Thank you. I’m guessing loads of people are in the same position as I am
I read what you’ve written and I think you just needed to share your thoughts with someone who would understand you. I do not accept your words as justification because you should never justify your sacrificies but others should understand you and not judge you. I’m going through the same and I know how you feel.
It’s funny though, I started following you long before I found out my son had special needs. You are doing great as a mother!
I think it could have been. We will always get judged for what we do, someone will agree to something and someone else won’t, I suppose it’s something will have to get used to. Hope your son is doing ok and thank you.
I’m so sorry you feel you’ve had to justify yourself. You shouldn’t at all!!! You’re both great parents doing everything you need to be doing to raise your son in the best possible way for him. Working and raising children is super tough.childrens things are sooooo expensive to buy especially nappies and vests. Xx
Thank you, stuff really is expensive then add ‘special needs’ to something and the price doubles
Some people are so frustrating, of course you are entitled to your money for him and of course you shouldn’t have to justify it to people!
This was an eye opener to read though, I’m amazed at how much more expensive vests with poppers and all in ones get as they get older – it isn’t fair really!
Everything’s more expensive it’s really bad . At the moment I’m lucky he fits into a size 6 nappy don’t know what I’ll do when he doesn’t!
I have just filled out a dla form and it killed me. Hated it writing what we go through was so sad. Lovely read xx
The dla form is so hard. I’m assuming I’ll have to fill it in again next year. It’s hard writing everything down as it really does highlight how difficult it can be. It’s even harder with the no sleep!
I don’t no if we will be awarded it yet as he hasnt been diagnosed. But the thought of filling it out agin is so daunting. No sleep or emotionally drained. No fun at all
Good luck, Z wasn’t diagnosed when I filled his out, he got diagnosed the day after he had been awarded it. I only applied for care as he was only 3 . The mobility part seems just as hard.
Iv been told boo cant be diagnosed until hes 5. I don’t no what parts i filled out. Our support worker suggested i apply for it. Thank you. Slowly reading through your blog. Can relate to so much. X
Yes fill it out and hope for the best, and if not appeal. Can’t be diagnosed with autism till 5? I know they’ve changed it and the peadriarician can diagnose under 5’s now
Hes under the peadratic consultant. And they said hes to young to be diagnosed. They want to start him on sleeping medication soon because thats one of our biggest struggles.
Maybe it’s different in different parts of the county, I was jus really lucky. I called the health visitor in at 18 months, we had speech then portage, got him in to crèche with one to one. I know I was very lucky.
Just done my dla form. It is so hard. chin up and keep trooping!
It’s a nightmare form isn’t it! Good luck!