Are we being ripped off as special needs parents?

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If there is one place where my children feel safe, relaxed and happy it is in a multi sensory room. The twinkling lights, relaxed ambiance, tranquility and sense of well being is totally priceless and it seems the manufacturers and providers of these rooms agree with me on that!
Did you know the average sensory room in a school or nursery costs upwards of £5,000 and this is just the basics!

I am in the process of building and equipping out a sensory room for my twins with autism and I sure don’t have that sort of cash in my back pocket. The reality is that due to the complex needs of both my children I am their full time carer earning a measly £62.10 a week in carers allowance. My maths is not brilliant but by my calculations it would take over a year and a half saving every single penny of that amount just to get the basic cost of a sensory room. They really need this now not in 18 months time!

So I started some research. Special needs parents are experts at research.

I took the top ten pieces of sensory or special needs equipment my children need and use on a daily basis and compared some prices. I was expecting some fluctuation in price due to suppliers, delivery and quality but my results shocked even me.

imageTake a basic 90cm tall bubble tube. This is one of the most basic pieces of equipment for any sensory room and many have several of these in, often much taller.
Where you aware these are actually readily available from many high street retailers and online suppliers for a fraction of the price of sensory sites?
eBay for example sells brand new bubble tubes for £24.99 while the equivalent from a specialist online sensory site was £49.99. That is a massive 100% price increase. While the quality may not be exactly the same the effect is.

On the same topic of lights my son is a huge fan of fibre optics. Large lengths of fibre optic lights amaze him but he is equally enamoured by a small fibre optic lamp. On Amazon I can pick one up for as little as £1.24 compared to a large national sensory site wanting £5.99 for the same item. That is a massive increase in price of 383%. It seems the minute you add ‘special needs’ or ‘sensory’ to an item you can get away with inflating the price beyond reason!

I then looked at one of the most common fiddle stress toys on the market for children: the tangle junior. This is a popular toy for children with autism and is often used in schools. They are available in high street stores but the cheapest I found was £3.15 brand new from eBay with free delivery. Compare that to the exact same one on a large sensory site for £5.99 with a staggering delivery cost of £10.80 meaning including delivery the price increase mounts up to an unbelievable 433%! I am beginning to feel ripped off here!

Surely the humble and well known slinky would prove me wrong? Sadly no! While I could easily pick up one in a high street shop for as little as £1 the cheapest I could find from a sensory special needs site was a whopping £4.80, which would you believe was an increase of 380%!

imageOne of my sons all time favourite sensory items is a space blanket. This is a silver blanket used in emergencies to keep warm but the noise, shiny texture and size makes it a common and long lasting sensory item. I could pick this up at a high street car accessory shop for just £2 but sensory specialist websites had the same thing for £4.50, more than double the price!

The kids need somewhere to sit and what better sensory way to do that than on a beanbag! They love them! On the high street from a catalogue company I can pick one up for £24.99 but the cheapest available from special needs sites was a crazy £144! That is a huge increase in price of 476%. That actually makes me feel sick!

A 12lb weighted blanket is approximately £70 on eBay brand new custom made while the sensory sites charge £192 for the same item!

A rainmaker toy can be bought on the high street from a well known early years children’s store for £6.99 while the sensory sites charged £13.95 for the same item.

Ear defenders, one of the most popular items bought for children with autism or sensory processing disorder are available on an online auction site from as little as £1.99 but the cheapest I could find from any special needs stockist was £9.

Finally for a red chewy stick used to support many children who seek oral stimulation I found one of the cheapest places was Amazon at £4.44 for one while the national sensory provider was £8.95 for the same branded item.

In total my basic list could be bought for £140.79 but for a dear as £439.17 an increase of 212%.

Some of you will argue that quality is worth paying for and that these may not be like for like products but in some cases the product was exactly the same brand and specifications!

I have no intention of wanting anyone to go out of business or for staff to not be paid a proper wage but I still can’t help feeling that special needs parents are being ripped off by sites adding the words ‘special needs’ or ‘Sensory’ to an item as a means of inflating the cost.

Of course no-one is making me buy any of these products, in fact you could argue they are luxury and not necessity. What is absolute necessity for my children though is nappies so you can imagine my delight when I discovered a discount supermarket had pull ups to fit my almost eight year old at the amazing price of just 10p a pull up! Topping up my NHS supply of just four a day using the same nappies provided by the NHS was coming in at 45p a nappy. That is quite a difference when you go through up to 20 nappies in a 24 hour period!

Special needs parents, do some home work. There is some amazing specialist equipment on these sensory sites that can not be bought elsewhere but don’t be fooled into thinking you can not find some products on the high street.

Don’t allow yourself to be ripped off!

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To the child at the awards ceremony who knows their name will never be called.

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Ah, end of term.

Sports days, shows, school trips, report cards and of course the all important end of year award ceremony. Proud parents just as excited as their children, relieved teachers glad to show that someone really loved their teaching and halls full of eager little ones hoping and praying their name will be called.

You already know social media and family gatherings will be all about little Jane who had a distinction in maths, or young Brian who scored the most goals for the school football team this year…but what about all those children sitting through the ceremony year after year longing for their name to be called yet never hearing it?

What about the children who have found the school year exhausting, who have struggled to master ten new spelling words a month and who have needed support every single term? What about the child whose parents have separated this year meaning she has had huge difficulty focussing and has slipped down the ability chart as a result? What about the child for whom just getting through a single day with the noise, bright lights and confusing smells is a huge achievement? What about the child whose health issues mean that getting to school is an achievement in itself?

What about the children like mine?

Each year they become more and more disappointed. Each year their self worth and excitement gets less. They will never be top of the class, or excel at sports or get the starring role in the school play.

More and more children with special needs are being educated in mainstream schools. It has huge advantages but at this time of year of competition and recognising achievement it can be so demoralising for a child who has tried their best day in and day out and still never hears their name at the award ceremony.

I wish I could speak to every one of those children. I wish could hug everyone of their parents. I know the heartache of seeing your child feel left out. I know how hard it can be to clap and cheer every achievement announced knowing your child can never compete or be in for a chance of winning something.

Stay strong children. Stay strong parents. In cheering on others and noting their success you are developing character and if that was ever measured you would both win without a doubt.
If there were awards for perseverance, for strength, tenacity and determination YOU would be the winner. If there were awards for fighting spirit, purity and trying they would be calling out your name loudly.

One day the world will realise stars are much more that the best achievers.

Until that day, if your name is never called at that award ceremony: stay strong. Your self worth is not measured by certificates. Your importance is not measured by how many people cheer.

You are important. You are worthy and you are special. You are the best at being you and that is better than any award that any school can offer.

I’m not sure if you can hear it little one but I am cheering you on! Keep up the great work!

This piece originally appeared here

Autism: should it affect medical treatment or not?

Everyone deserves the best medical treatment possible at all times. No life is worth less than another. What happens though when someone can not understand treatment, or convey pain, or communicate…should they be treated differently?

Here is my story.

My son is seven years old with a diagnosis of non verbal severe autism, learning difficulties and Neurofibromatosis type 1.
Let’s stop there and make this much more personal. Here is Isaac, a cheeky, lift loving, teddy chewing, energetic, loving seven year old.

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Isaac has had some major medical tests recently to help find out more about what is going on in his body and mind given his medical condition and difficulties communicating.

He had an EEG. This came back abnormal.

He had an MRI under general anaesthetic. Yesterday we had the results. He has microphthalmia is his right eye which means he has no vision at all in that eye. His left eye has an optic glioma, a type of brain tumour.

As I said Isaac has severe autism. Should this affect how he is treated for his optic glioma?

We have two options at present.

The first is watch and wait. The tumour may never grow and his vision may remain stable. No-one really knows.

This option relies on regular eye tests, regular MRi’s and the patient communicating any changes to his vision or health.

This is where autism poses a problem. Isaac has yet to be able to carry out a conventional eye test. He shows no interest in picture cards, can not identify numbers or letter consistently and has no means of communication or even understanding any changes to his vision. MRI scans involve general anaesthetic and therefore come with risks. The MRI can identify any tumour growth but has no way of knowing any symptoms the patient may be having.

Should my sons autism affect wether we take the risk of watch and wait?

The second option is chemotherapy. That comes with huge risks and is highly invasive. Isaac would have no understanding of the medical treatment and struggle with any changes. We would once again have no knowledge of how it would be affecting him as he has no language. This could make managing the treatment very problematic and challenging.

Do we risk chemotherapy on a child with such limitted understanding and awareness?

Before any of this happened to me I would have argued that no child should be treated any differently medically just because they have autism. The fact is you HAVE to treat them differently.

Whatever decision is made by my sons medical team in the next days and months will all come down to his autism as much as his medical challenges.

I trust my sons team. He has some very skilled medics on board but there will also be communication specialists too. Why? Because his autism DOES affect his medical treatment in a very big way.

I stand by what I said at the start. EVERYONE deserves the best medical treatment available at all times. It is just, in my sons case, autism has a major part to play in what the best medical treatment is. That is a fact we can not ignore.

The decision is somewhat out is my hands. Isaac has no say in it either.

Autism affects so much about my child and in his case it affects his medical treatment too.

I am so grateful for doctors who understanding this.

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Never before has a tray of pasta meant so much to me

imageNever before has a tray of pasta meant so much to me

I could so easily write a negative post. Life is anything but a field of roses right now but right in the midst of pain and struggles a little kindness, a hint of love, or even a tray of pasta can change things!

This post is dedicated to the manager of a pizza restaurant local to me. I will be printing out a copy and hand delivering it to her this week.

I need her to know that never before has a tray of pasta meant so much to me.

imageMy children are struggling. I try and disguise that but I can’t. In the last month my son has endured some difficult medical test including 24 hours of wires glued to his head:

And a few weeks later having to have anaesthetic for an MRI to identify where all his tumours are growing inside him.

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For any child these things are a real challenge but when you can not talk, have limited understanding and have a diagnosis of severe autism and neurofibromatosis these things just seem so much harder; for the child and the parents.

As well as this he has had to cope with a change of teacher at school and beginning overnight respite. He has been brave but in turn we have had to deal with some challenging behaviour.

For his twin sister these procedures and the ensuing changes to her schedule have been so upsetting and disorientating. End of term changes at school, a wobbly tooth and her friend being off school have made everything seem so much worse. This all causes one major difficulty: when stressed Naomi stops eating. Really stops eating.

Isaac loves his food. Anything edible is the highlight of his day. Among his many favourite foods are pizza, salad and garlic bread. One of the very few things his twin sister will eat is a certain pasta from a pizza restaurant.

Sometimes as a parent you do what you need to do to survive.

As much as I try to hide it it is very obvious even to a stranger that my children have struggles. Yet in this particular restaurant we always seem to be welcome.

By now you may have guessed what happened. My daughter broke her self imposed stress related fast and picked at her favourite pasta. As I took her brother up to the buffet the manager spoke to me with a smile and said she noticed my daughter only ever ate the pasta so she would go put more on ready for if she she wanted it. I wanted to hug her.

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Never before has a tray of pasta meant so much to me.

I had to say something because by now I was emotional. I sort of whispered that Naomi has autism and loves the pasta and thanked her for her kindness.

I thought nothing more of it until I went to pay and the manager said she had something for me. She handed me a bag with an entire tray of the pasta in!

She had no idea of our story. She had no idea the stress we had all been through and the daily struggles we face. She had no idea that that pasta was pretty much all that was keeping my daughter out of hospital.

A tray of pasta.

Never before has a simple tray of pasta meant so much to me, or my daughter.

You don’t need to know someone’s struggles to be kind. You don’t need to know their story to show love. The smallest of gifts can impact another life so much. Be kind. Show compassion.

We have of course eaten the pasta now. But the love shown to my family that day lives on.