The Cost of Special Needs

The cost of special needs is something that not many people talk about but it affects all of us.

This post may contain affiliate links.  Please see our disclosure for more details.

Benefits

Yes there are benefits out there.  Do you know what’s available?  Are you claiming?  They don’t advertise these things do they?  It’s down to you to explore the options.

Disability Living Allowance

We are one of the lucky families to receive DLA (Disability Living Allowance) for our son.

For us, the money is a lifeline as it enables us to pay for our son to have riding lessons.  To be quite frank, we wouldn’t be able to afford it otherwise.  The benefit to our son is huge.  The stables are the only place that he will go and not need me to stay with him.  He has made friends (ok sometimes this is a bit rocky) and, best of all, the people there get him!

The people that assess the DLA applications are not necessarily medically trained.  It isn’t always assessed by the same person.  Our renewal is due next year and I’m dreading it.  Just because it was successful the first time, doesn’t mean, even though things are worse than ever, that it will be successful at renewal.  It is quite possible that it will be assessed by a different person who has very different views as to what is necessary!

Tax Credits

I informed the Tax Credit people that we were in receipt of DLA and, in their wisdom, without waiting for my accounts (I’m self employed) they awarded me tax credits.  Two years later, after they’ve had my accounts, they’ve decided that I shouldn’t have had any money from them and I now have a huge bill.  I asked the gentleman on the phone what he wanted my kids to go without and he asked me what I meant.  I explained that, at the moment, there is always more month than money so, in order to pay back the money that they have incorrectly paid me, my kids would have to go without something.  Now I understand why a lot of people simply do not claim…….

Don’t get me wrong, we are by no means badly off, we are just in the same financial situation that a lot of people are finding themselves.  The cost of living is going up faster than wages.

Carers Allowance

I’m currently unable to work. My son hasn’t been in full time school for nearly 2 years.  I have needed to be at the beck and call of the local authority, of the school, of my son, of the specialists.  You name it, I’ve had to drop everything to accommodate others or risk being accused of being obstructive.  Yep, apparently we are difficult parents and we aren’t trying……

I’m one of the lucky mums though as, even though I am self employed, I have residual income.  It’s not huge amounts but, without fail, I receive an income each and every month.  To be brutally honest, I don’t know what we would do without this.  I was advised to claim carers allowance but, due to my residual income, I don’t qualify and, to be honest, with what happened with the Tax Credits, I’d be reluctant to claim anyway!

How on earth do families actually cope with only one income!  It’s not like things are getting cheaper.

Cost of Living

For sometime now, I’ve been using a clean eating approach to our diet and buying organic where possible.   However, the more difficult it becomes to find food that my son will eat the less feasible this becomes due to the waste.   I’ve had to compromise my ideals in order to actually get my son to eat.  To find out a little more about this, please see my post Food and Pathological Demand Avoidance

Drinks are another difficult issue for us.  We tried to eliminate artificial sweeteners from our diet as we notice a dramatic impact on the behaviour of both our son and our daughter.  Not to mention the health implications.  However, now, with the sugar levy, it is far more expensive to buy drinks without sweeteners.  I did find some brands that were actually free from all nasties but, did I mention how much more expensive these things are?

If you want to reduce chemicals and use as near natural products as possible, you need to pay a premium.

Support

Siblings

My daughter is classed as a young carer and attends My-Time Plus for Young Carers twice a month and is also registered with Surrey Young Carers.  Both of these groups are free and they provide her with much needed respite.  She has made some great friends and absolutely loves her time there.  It gives me comfort knowing that she is receiving support.

Special Needs Child

We tried to find something similar for our son.  After much searching I found one that sounded ideal apart from its location.   It was a good 30 minutes travel but it was for a 2 hour duration and included things like lego therapy.  Unfortunately, it went wrong and we had to stop going.  Oh and did I mention……..we had to pay…..

Please don’t get me wrong, I don’t begrudge paying for my son to go to a club but, why is it that the child that needs the help has to pay for it?  I’m not saying that my daughter doesn’t need the help but there is almost too much help available to her as a sibling and very little for the child with special needs.

Parents

As the parents to a child with special needs, rather than support, all we seem to get are sanctions.  My doctor keeps telling me that there must be support out there for us, she can’t believe what we deal with on a daily basis but, as yet, I haven’t managed to find anything that is accessible.

Without the likes of people that I have met through social media, I’d be lost.  Danielle of PDA Parenting and Steph of Steph’s Two Girls are 2 such people.  They are always there with a sympathetic shoulder or supportive words.  P, Withlovefromp, is another person that is amazing with her support.  Whilst not a PDA parent, she understands.  Then there’s Emma.  I know Emma through Instagram and we just clicked.  She has the most amazing Etsy shop full of pretty things for planners!  My planner keeps me sane (ish).  Why not take a look at her shop Hearts by Emma?

The Cost of Special Needs

There’s no getting away from it.  The cost of special needs to the actual family is high, both emotionally and financially.  We do our best but, when it comes down to whether or not you can afford a special piece of equipment or help and support, is this right?

If money was no object, what would you provide for your child to help make life more fulfilling?

Until next time, stay strong.

Lyn

PS sorry that this post is a little late, life at the moment is somewhat challenging.