When the local children mocked my son with special needs

img_5960For months we had watched a new children’s play park being build behind our house. We had walked along to see it with excitement and I checked the plans to see what equipment would be suitable for my children, especially for my son who has significant support needs.

I saw advertisements for an opening event but knew this would be more than both my children with autism would be able to cope with, so I never mentioned it to my daughter. Instead, later that evening when the event was over, I put their socks and shoes on and surprised them with a walk around to the new park for the first time.

There were no roads to cross but I still had to hold both their hands tightly since neither has any awareness of danger, but once in the enclosed park I allowed my son to run ahead flapping with excitement. I opened the gate and guided the children in. It was early evening but still daylight and it was no surprise that they were the youngest children there. The park was busy and noisy though with older children and teenagers, yet not one parent in sight. I was unsure if my children would cope but what happened next made me realise that it would not be my children who would struggle but actually me!

 

 

img_5958As my son laughed and walked around stimming I helped my daughter climb to get to the slide. As she climbed up a bunch of children ran towards her shouting, having climbed up the slide and over the top of the frame she was on. I looked round to see another bunch of children running in circles around my son laughing in his face. My children were shocked and scared. They had come to play not be tormented in their local playground!

The more I asked the older kids to leave my children alone the more they seemed to annoy them. They spun the roundabout with my son on far quicker than he was happy with making him scream. They mocked his stimming and noises and ran amok round all the swings and apparatus. It was as if they saw how vulnerable my children were and that made them an instant target. It was awful.

I shouted at them to stop. There were no adults around and the kids were clearly not caring. They poked at my son, knocked into him and climbed on whatever he was playing on. My non verbal son with vision impairment and severe autism was oblivious to what they were doing. The more he made noises and flapped the more they laughed and pointed. His twin sister thought they were being ‘silly’ and kept asking why big children were in a little kids park.

img_5955I played with my children and tried to ignore them. I took ‘happy pics’ and planned to post them to Facebook when I got home. People don’t like hearing the bad stuff so I was just going to head those pics up with ‘fun in the park’. My children did have fun. Unfortunately for them other children also had fun at their expense.

I wonder if the parents of those older children have any idea what their kids were up to that Saturday evening? My twins are unaware of what really happened that night, but I am. In an era where disability awareness is common place and inclusion in schools is the norm it scares me that other children still see bullying and mocking kids with special needs something entertaining.

My local authority website boasts that this new park has equipment that is ‘inclusive’ for all children. They have changed some apparatus but sadly we still have a long way to go to change attitudes before I can once again take my children to the park without fear of local children mocking my son with special needs.

img_5959We will be back at that park soon. My son will once again flap, spin and make noises. My daughter will want in the baby swing and will sit on the roundabout with her brother. She will go down the slide again and again and again. My children thrive with repetition. Let’s just hope the local children don’t repeat the bullying I witnessed of my son last weekend.

The park changed. Now it is time to change hearts and minds too.

How setting up a just giving page changed things for my family.

Most of us find it very difficult to ask for help. It is often seen as a sign of weakness in society and a sign that you are desperate.

Recently I found myself asking for help for that very reason; I was desperate.

I had to let go of my pride and allow others the opportunity to support me.

 

Gwynne - 20151003 -33 - highWe were going through a time of crisis as a family as my son’s MRI results showed upsetting results with his eye sight. As well as autism my son has the genetic condition neurofibromatosis type 1 and a routine scan showed one eye has microphthalmia and his other eye has an optic glioma. Both are very significant conditions that require long term care and close maintenance and both can leave him blind. Currently one eye has next to no vision already.
He is non verbal with classic autism. He has global developmental delay and sensory processing difficulties. He has severe learning difficulties. Life is not easy for him.

My daughter also has autism and huge anxiety. She has mental health struggles and an eating disorder.

Both children require a lot of support and I am a full time carer for them.

My sons challenging behaviour and my daughters anxiety meant they would both benefit enormously from a room to relax and chill out in. We were regulars at special needs places and I knew both of them loved visiting sensory rooms. I wondered if having one of our own would help them.

I looked into costs, funding, ways to build one and equipment that would benefit them both. The financial costs made me cry. Even with funding support it was impossible for us to build a sensory room on our own. Then I came across just giving.

I hesitated.

Was it right to ask others to support us when there are so many other good causes out there? Could I swallow my pride and allow others to help? Would anyone even care?

Almost reluctantly I set up the page and put it on my social media. As people began to give I cried again. With every donation I wanted to hug people. Every email notification on my phone make my heart skip a beat.

Just giving showed me people cared.
Just giving showed me we were not alone.
Just giving enabled people who don’t even know us to invest in my family.
Just giving reconnected me with friends and relatives I had lost contact with as word spread and my image was shared.
Just giving made my dream of a sensory room for my autistic twins come true.

By the end of the 30 days our target was not only met but exceeded. We had a custom build shed made and installed and ordered the equipment with excitement and gratitude.

 

It IS making a difference. More than I ever imagined it would. Every single penny given has been used and has changed my family.

When my son is frustrated he has somewhere to go and calm down that relaxes him and excites him.
When my daughters anxiety gets too overwhelming she has somewhere to go to destress away from people and events that overload her.
It has enhanced and developed their relationship and brought joy to my entire family.

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The room will grow with them and change to meet their needs as required.

 

Instead of crying we are now dancing together. We are more relaxed as a family thanks to every single person who clicked ‘donate’ on our page.

Just giving changed my family. It was hard to let people help but so worth it.

Asking for help is not a sign of weakness, it is really a sign of strength. Never be afraid of letting others help make your dream come true.

Just look how happy my children are in the sensory room.

Thank you to everyone who made this possible.

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How my sons inability to speak is tearing our relationship apart.

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This is something I have never written about before or admitted to anyone, but I have always struggled with my relationship with my son compared to his sister. I don’t love him any less nor do I favour one above the other but there is something that prevents me being as close to him as I am to his sister: his inability to speak.
The older he gets the more it is literally tearing us apart and that breaks my heart.

We are both trying, we are determined to try and overcome this but no matter what we do it is always there lurking like a dark shadow.

We play together, we ‘read’ together (well I read to him!), we share games and we eat together but it is incredibly hard to reach into him when he is non verbal. That breaks my heart. Having no spoken language at all really affects my son so much.

Having no language at all at almost 8 years old has forced him to be more independent.
He can’t ask for help or even ask for something to eat. So he uses his physical skills to open the fridge and help himself or open the front door and take himself out. The other night he took himself to bed because he was unwell. He has in the past brought me a cup or a bottle of juice and I have found him sitting at the table with an empty plate in front of him too. I would love to be able to hear him simply say ‘mummy, I have a sore head.’ Or ‘can I have something to drink please.’. He won’t always have access to the bottle of juice or cup to let others know what he wants.

Having no language is making him frustrated and angry.
imageI know if, like his sister, he could talk about his day at school and let us know what has upset him we could help him calm down and share his day with us. When he looks at a box of toys and points it is incredibly upsetting for him when we continually have to guess what it is he wants and we frequently get it wrong. He gets upset at certain programmes on the television but has no way of telling me why so he gets angry instead. He finds open doors highly distressing but has no means to tell me why so instead he becomes frustrated and violent. Speech would help us resolve all these issues. Some will be quick to suggest sign language or picture communication but these are so limited and his inability to make the right sign or find a relevant picture just make him even more angry and frustrated.

Having no language means he is at the mercy of others to communicate on his behalf.
Could you imagine having a wonderful holiday, printing out all your photographs and yet someone who wasn’t even there with you decides to tell everyone about YOUR holiday without allowing you to say a word? I am certain you would find that irritating and annoying and you would become very cross. This is what is happening every single day when I send my non verbal son to school. Adults dictate what information I receive on my sons behalf and tell me (if I am lucky enough!) about the experiences he has had. It’s not what I want. It’s not what my son wants either! He wants to be able to tell me about his day, his way! When I pick my daughter up from school she tells me about her favourite pencil breaking, the games she played at playtime and the funny shaped banana a child had in their packed lunch box! This is life from her perspective and something I can never ever get from her brother. A huge chunk of his day is a mystery to me and he has no language to enable that gap to be bridged. Have you any idea how difficult and heartbreaking that is for us both? It rips our relationship apart.

Having no language is life limiting for him.
He will never be able to read to me, or to anyone else. He won’t ever be able to use his voice to tell a joke or share a story. He won’t be able to sing or even give me cheek. As he gets older he will not be able to use his voice to ask a girl out or even say ‘I do’ on his wedding day. Asking the price of an item in a shop, asking directions, even telling the bus driver where he wants to go are all going to be difficult if not impossible. He is likely to need someone with him to support him throughout his life. Using a telephone is never going to be easy and connecting with other people will always be much more complicated.

We have tried alternative methods of communication. We spent years trying makaton but he can’t manage the signs himself and is struggling with picture communication too.

I know if he could speak so many things would be different. I know if he could speak we would be so much closer. How do I know this? Because he has a twin sister and my bond with her is strengthened every single day through language. She tells me about her day at school, her worries, her achievements. We play together and I join in her games because language enables us to play together. She reads to me and with me. She can tell me what she wants and I can listen. She shares her emotions, her ideas; her life with me through talking.

The more she talks to me the more we bond. The less my son is able to say the communicate the more our relationship is strained.

I am working on my relationship with my son every day. We have a very special bond and a deep love but there remains an invisible problem between us that is tearing us apart: the fact he is non verbal.

If I could change anything it would be that he would one day be able to speak to me. If only love could make him talk…

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When you don’t feel ‘enough’ as a special needs parent

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By 4pm the panic was setting in. Later afternoon is the time it mostly hits. I begin to think about dinner, cleaning up, baths, stories, and hopefully bedtime, and I realise yet another day has passed and things haven’t changed. When my children eventually settle to sleep my mind will run through all the missed opportunities, all the forms I never quite had time to fill in and all the moments I left my children to entertain themselves. Did I do enough today to help them? Did I do any of the exercises the physiotherapist told me I should? Did I ensure my daughter had her insoles in to correct the turn in her feet? Did I teach them anything or encourage any social skills?

Even if I did something, was it enough?

If I read my children’s speech reports I am reminded of all the times today I forgot to use pictures to reinforce understanding, and why do I suddenly remember all about makaton signs the second my child has fallen asleep?
Then I remind myself I am not a speech and language therapist. Even more important I am not MY CHILD’S speech and language therapist. I am his mum. I can never be ‘enough’ for his speech and language development as that is not my speciality. So I could do more! What parent can say they honestly do all the exercises with their speech delayed child all the time?

If I read my child’s physiotherapy report my heart sinks. Once again another day has passed and we never did those leg strengthening exercises she hates, or invented games that required rolling. When I was busy cooking I noticed she was sitting in that ‘W’ shape again and I left her too it. I never did enough. Actually I don’t think I have ever done enough to satisfy her physical needs. I feel guilt about that daily but then I am sure all parents feel like this sometimes? Maybe it is just me?

I left my non verbal son to watch videos on his iPad today. Not the most ideal thing according to therapists I know, but sometimes I just can’t do it all. I even put my two autistic children in the car and went somewhere today without first reading them a social story about it, showing visuals and going through the route on google street maps! Oh dear, no brownie points for me today!

The fact is they survived. I survived. We lived to see another day, and yes I will always feel guilt at what we didn’t do in terms of therapy or research or exercises, but in many other ways I was more than enough for my children today.

They had more than enough of my time.
They had more than enough to eat and drink.
They have more than enough toys and technology.
They have more than enough clothes to wear.
They have more than enough access to medical and educational support.
They have more than enough love.

Fellow special needs mum, remember this: never let any professional make you feel less than enough. Never let your child’s struggles make you feel less than as a parent. You ARE enough! Your love, encouragement, support and dedication WILL be enough. Did you make it through another day? You were enough today and you will be enough tomorrow.

Never ever forget that!

This post first appeared here.

 

 

 

Why I am worried about Theresa May as Prime Minister as a special needs mum

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I am usually too wrapped up in my full time caring role as a mum to two special needs children to actively follow politics, but one night last week I just happened to turn on my TV and find out my country suddenly had a new prime minister! I don’t recall ever seeing her name on any election paper or have I missed something?

It seems in the world of politics, unlike my world of full time caring, change is common place.

Maybe it was just nervousness regarding change, concerns over the unknown or fears about the reality of living in a country that was about to leave Europe, but I watched the news about the changeover with real apprehension.

It turns out I DO have reason to be worried.

In her opening speech as prime minister I heard Theresa May speak about building a “better Britain” and I heard her go on to say “If you’re from an ordinary working class family, life is much harder than many people in Westminster realise.”

She talked about “burning injustices” like dying young due to being poor, or being paid less because of gender or young white males being less likely to enter university and I kept listening for more.

But there was nothing that I needed to hear about disability access for my children, or more help for full time carers.

So I looked at her history during her long time in government (so why had I not heard of her?) and my worries as a special needs mum and full time carer are very valid.

Like many full time carers I live in rented accommodation. Both of my children require round the clock care and it is not possible for them to share a bedroom as one has night seizures and the other night terrors. So I live in a house that the government deems to be ‘too large’ and they impose an extra tax on me for this (which we do manage to now avoid due to the significant disabilities of my children but it required yet more paperwork and fighting).
What did I read about our new prime minister?
Theresa May generally voted for reducing housing benefit for social tenants deemed to have excess bedrooms (otherwise known as “bedroom tax”).

Oh dear!

What about the income support, carers allowance and other benefits I rely on to survive as a full time carer and special needs mum? Mrs May implied in her speech that life for some is much harder than many in Westminster realise. Does she have any idea how hard life can be to be fully dependent on benefits just because your child or children are disabled and therefore need constant care. What is her thoughts on this?
Theresa May consistently voted against raising welfare benefits at least in line with prices.
Theresa May generally voted for a reduction in spending on welfare benefits.

Sigh

What about the benefits my children rely on like disability living allowance?
Theresa May generally voted against paying higher benefits over longer periods for those unable to work due to illness or disability.

Ouch

What about the rights of my children to receive education, access to treatments, support and protection?
Theresa May generally voted against laws to promote equality and human rights.

What a worry!

What about all the services my children receive on the NHS like physiotherapy, occupational therapy and speech therapy (my son is non verbal and both my children have autism)?
Theresa May generally voted for reforming the NHS so GPs buy services on behalf of their patients.
While that sounds great in principal it would require massive funding levels for GP’s given the level of service both of my children require.
I have huge concerns wether that funding will ever be enough.

I don’t normally ‘do’ politics and I am not saying that Theresa May will not be good for my country. That remains to be seen. But as a full time carer, as a special needs mum, and as someone reliant on benefits as a result of my family dynamics, I am worried.

I have a few things in common with Theresa May like being the daughter of a preacher, having a strong marriage and struggling with an inability to have children for years. I just hope that we both also have in common a belief that disability and the rights of carers MUST be a priority too.

Right now though, as a special needs mum and a carer, I have reason to be worried.

Information for this post was gathered from the following site: TheyWorkForYou.com

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!

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

They need therapy NOT a leaflet!

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We have waited 5 months to see a dietician as my daughter’s weight kept dropping and the list of foods she would eat became less and less. With a complex diagnosis no-one seemed to know exactly who she should see to help her, so as usual we were passed from pillar to post. We had high hopes that finally we could get some help and support.
The appointment went well. We did everything we were asked in terms of listing all she eats and drinks and giving a comprehensive background. All seemed good.

Yet once again all we left with was…a leaflet listing foods of different colours she may like to try!

Really? Do you not think I have googled similar in the last five months of waiting?

Dear dietician, my daughter needs help, not a leaflet.

A similar thing happened when her brother was referred to physiotherapy last year. We were added to a waiting list and it was months before we heard anything. Finally we were offered an ‘initial assessment’ which, in this case, was a home visit. Once again we went through all the motions and assessments and gave a full medical background. The therapists talked about how delayed our child was and suggested lots of things that could possible be done to help. I was getting excited. My child needed this service and it looked like we could finally see some progress. After all this is a child who was so physically delayed he never started to walk until three years old. She left without giving us another appointment. I should realise what that means by now.

A week later we received the report in the post with a leaflet with some exercises to do with our son that may help. A leaflet? She said he needed therapy yet all we were given was a leaflet!

Dear physiotherapist, my son needs help, not a leaflet!

Waiting to see a dietician and a physiotherapist was nothing compared to the wait we had trying to get both children diagnosed with autism. My son was first verbally diagnosed at just 21 months but it took until he was three years and nine months, two full years later, before he was officially diagnosed. His twin sister was first picked up at aged 3 but it was 23 months later before she had her formal diagnosis. That sort of wait is not uncommon. When you wait all that time to then be formally told your child has a life long communication disorder, and in my sons case significant learning difficulties too, you want and need so much. You want signposted to organisations that can help, to support groups, to professionals who can support your children. You need people to be there to support your children and yourself as you start this new journey.

Instead I left both times with just a leaflet in my hand.

I am not sure what I thought I would get but that leaflet seemed so little, so pathetic and so inadequate.

My children both desperately need speech and language support. My son is now seven and a half and still non verbal. Neither of them have received any direct support for almost two years. Of course, if you asked the service why, they would say they have helped us. In what way? Why of course they sent me out some leaflets!!

I have a huge collection of leaflets now. I feel fobbed off by them to be honest. The money spent on these leaflets could so easily go towards real therapy that could make a huge difference to my children and so many more.

If I make a formal complaint I know exactly what will happen. I will be posted out another leaflet on my rights as a patient and where to complain to.

I haveaccess to the Internet. I can work Google and I am able to find this information myself.

I do not need another leaflet!

Dear health service,

I love you dearly but I feel so let down sometimes. You seem to have a love affair with leaflets and I don’t. There are times when they have their uses but please remember something very important:

My children need real help and that will not come from a leaflet.

Could we get more support from professionals and less leaflets please?

Thank you!

 

Let them play

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Let them play!

My heart is happy. My son is sitting on the living room floor with a large canvas bag and a pile of teddies. He fills the bag full of teddies, takes them out one by one and then refills the bag once again. It may seem very different to what other seven year old boys do but he is playing.

So I let him play.

Sometimes I get right down on that floor beside him and name those teddies. ‘This is Elmo’ and ‘This one is a panda’ and so on. I almost feel pressured to turn his play into a learning experience or a speech and language therapy session. When your child has significant disabilities and delays the pressure to use anything to ‘bring them on’ is overwhelming. But sometimes they just need to be children. Sometimes we need to allow them to explore and learn and enjoy being in their own world.

So let them play.

When the weather is more favourable we like to go to parks. Sometimes we walk about, or have a swing or venture down a little slide. I have to be so careful that any places are fully enclosed and have equipment that can take the weight of an older child still using frames build for younger, much lighter, children. But mostly our biggest problems is the general public who see my child licking the equipment, or flapping or running around in circles and they mock. And while he knows no different, I do. So he loves the baby swings, so what? He takes a whole lot longer than other just to climb up a few steps and manoeuvre his body down a slide. So what? He is enjoying the park, the fresh air, and learning from others.

He is playing.

I can’t let him be in the garden alone. He can’t join a football team or a drama club. He can barely balance enough to run never mind ice skate or dance. But boy does he love a good tickle! Or some rough and tumble play on the bed. He loves nursery rhymes with actions even if he can’t do any of them himself yet. He loves stories and videos and Peppa Pig. He loves sensory activities like lights and repeating sounds. He likes buttons to press, tummies to squeeze, toys that pour out and anything with water. His toy collection is all things for under three year olds. I am totally fine with that because they make him happy.

And they enable him to play.

We haven’t reached the imaginative play stage yet. Or the social play. He can’t read or write or even speak. He can’t kick a ball or throw and catch. Cars are just something he puts in his mouth to chew on. But fill a ball pull full of toy plastic food and he will sit there for ages exploring, looking and rummaging. He loves his iPad. He loves a DVD player. But most of all he loves his mummy.

So before he gets bored of those teddies I am off to play with him. It is one of the most important and most beautiful things a child can do.

However they do it…let them play!

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Learning to be tomato

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I am blessed to have a beautiful house. It has bedrooms,  a kitchen, a bathroom and a family room. It has walls and a roof and doors. I pretty much get to choose who enters my house and I can choose to close the curtains and blinds and doors and have privacy whenever I wish.

Yet in so many other ways my life is open to all, in full view and often seems like my every move is on show. In so many ways I live in a glass house.

When my children were young babies one of them was not gaining weight as fast as they should have been. We were scheduled to have a home visit every single week by a public health visitor for the first year of my twins life. An entire year of having someone see your children at home every week. Some visits lasted up to an hour. The only concern was my daughter’s weight yet our home had to be opened for unexpected visits at all times. That was the start of one wall of my house turning to glass.

By the time my twins were 18 months we had our first referral to community paediatricians. This put us ‘in the system’ and started more home visits by speech therapists, learning support staff and nurses who all entered my house regularly. I felt like I was on show having to keep my house fit for visitors at any time while trying to raise two very young children. A second wall of my house seemed to quickly be changing to glass for everyone to watch how we were living, playing and raising our children, all because they were not reaching milestones as everyone else felt they should.

Eventually the children began nursery and we were expected to attend courses about parenting and autism and attend regular meetings with the nurseries. As wonderful as it was to learn it also opened my family up to more people, and every interaction with our children had to have a purpose and a goal and we were even videoed several times in our own home. Sometimes it really felt like we were animals being watched in a zoo by all the professionals. A third wall of my house had now changed from brick to glass. As more people saw into our lives it got hot at times and stressful. It felt like there was such a lack of shade and privacy at times.

Three glass walls are hard to handle but while one remains brick and the roof remains covered there was still time to be alone. That is until the children started school. In order for their needs to be fully met we had to enter the new arena of school support. This meant multiagency meetings, school meetings, parents nights, school diaries and homework. Right before our eyes the last of our walls changed from brick to glass and our every move seemed controlled by our children’s difficulties.

Now we are in the realm of requiring more support. As the children have grown and their needs increased things like respite, befriending and budgets are now being banded around. Where you aware of how much of your life requires to be put on the line in order to access these things? There is no ‘sign here’ and we will give you it. Assessments are thorough, long winded and often extremely personal. You have to become vulnerable, lay yourself on the line and be scrutinised constantly. You have hoops to jump through and boxes to tick. In doing so the roof of my house, my only privacy and shade left, suddenly became made of glass too.

So my beautiful house has changed from bricks and mortar to a hot, cramped and open-to-all glass house. In order to help and support my children so much of my life and privacy has had to be sacrificed.

So how do we support them through this when our house has constant professionals visiting and calling and we have so many forms to complete? How do I enable them to have a childhood free from stress and invasion when so many people are involved in their care? How do I cope living in a glass house due to my children being disabled?

We are learning to be tomatoes!

We need the support of schools, nurses, occupational therapists, social workers, speech therapists and others besides in order to fully support our children. That means opening up our home, our lifestyle and our ways to many people. So we are going to use this to our advantage.

Tomatoes thrive in a glass house. While everyone watches on they grow, mature and become ripe due to the intense heat and pressure of living in that environment. Tomatoes are sweet, balanced and healthy despite being subjected to intense heat. They are versatile and popular.

Glass house living when you are raising children who have challenges is difficult, but by becoming tomatoes we can use our unusual circumstances to refresh others in many ways from soups, drinks, sandwiches or even tomato ketchup!

Sometimes I feel cut up or squashed but however you look at it I am blessed.

I am blessed to live in a beautiful house even if at times it seems like it is made of glass instead of bricks.