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.
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”).
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.
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.
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
It’s hard to attend meeting after meeting, appointment after appointment with a child who has extra needs. It is painful hearing diagnosis or prognosis from professionals who only see your child for short periods of times. Yet one of the most upsetting things of all for me as a special needs parent is receiving written reports about my child that are inaccurate, poorly written, or worse still, contain information relating to someone else’s child rather than my own!
It is unprofessional, inexcusable and very damaging to receive a report from any professional that is inaccurate.
These reports are often circulated to everyone working with your child and, even if amended, often the lies are hard to undo.
As a result of an inaccurate report on my son he was once given a school placement that was total inappropriate for him. The stress this caused us and the cost to the local authority to rectify this mistake is impossible to measure. In this incidence it was vital medical information that was omitted from a report, without which my son’s medical care was in severe jeopardy.
As a result of missing information we are currently in battle with the local authority again, this time in relation to school transport.
It is not just missing information that is an issue either. On one occasion I received a report about my son from a therapist which spoke about his ability to name different makes of cars and how he appeared to be doing well in a mainstream setting yet my child is non verbal in a complex needs school! We were sent someone’s else’s report but with my son’s name and date of birth! It was like rubbing salt in a raw wound to read that and I cried. What the department called ‘an innocent mistake’ left me terrified to open any more reports from the same department for months.
Then I have reports that state ‘mum said’ in a way that implies I have lied. These too often state things I know for a fact I never said or have been taken completely out of context. It can appear that the author of the report had an agenda and is willing to use anything said to prove their bias opinion. In matters like this it is their word against mine as to what actually occurred at the appointment or meeting as I have yet to be at such an event where matters are openly recorded. It is not the first time I have read a report on my child thinking I was actually reading a fiction story.
Then I had a report recently that stated my daughter had a diagnosis that shocked me. It shocked me because not only did her symptoms not even match the diagnosis listed but in fact every medical professional who had ever seen her had failed to mention this new diagnosis and it was the first our social worker and my daughter’s head teacher had heard of it either. When I inquired about the report I eventually found out the minute taker had just ASSUMED this was something my child had despite her only qualification being that of knowing shorthand!! This was over three months ago and yet not one person who attended the meeting that day has received an amended report! This so called ‘new diagnosis’ (in fact non existent!) could seriously affect my daughters health care and education yet it is glossed over as ‘human error’.
Some reports on my children are very well done. They are professionally written, accurate, include all relevant information, and are sent out in a timely manner like they should be.
Unfortunately other reports make a complete mockery of the health system and meetings. The fact is doctors and lead professionals rarely write their own reports now and while this may seem cost effective it is far from it when reports are clearly inaccurate and require amended and resent.
I have felt violated reading lies, angry reading about another child, and physically sick reading about made up diagnosis my child does not have.
We HAVE to get it right for every child and that includes written reports.
I only had one of my children with me tonight for a simple trip to the store for bread. My pulse was racing, my eyes darting about and my body sweating…all before I had even got him out the car! My son has autism. He does not respond to his name, has no awareness of danger and experiences sensory overload. He is unable to speak. Taking him out of the safety of our own home is dangerous, difficult and demanding! He happens to have a twin sister who also has autism and despite the fact I am a confident, independent person I really struggle to leave the house with my own children.
Thousands of parents throughout the country are in the same position.
Can you imagine what it must be like to not be able to leave the house with your own children?
Here are the six top reasons people gave me for feeling unable to go out with their child or children with autism:
Angela from Lerwick put it like this : “At the moment I’m struggling to get my 3 year old out of the bedroom let alone anywhere else. He’s been in the room for 3 days now.”
Lisa from Hartlepool told me, “(my child with autism) won’t walk far before lying on the ground and refusing to move.”
Another mum wanted to remain anonymous but told me, “I sometimes have to wrestle him just to get him in and out the car.”
2. No sense of danger
Susan from Leamington Spa said, “I have three kids, two with autism, all going in different directions with no sense of danger!”
Katie from Leeds agrees, “My asd child needs my full attention and I need to be running after her etc for her own safety constantly”
Danielle, also from Leeds told me, “I struggle at times because I have to risk assess every place we go..”
Michelle, from Lanarkshire in Scotland has a similar problem: “I struggle sometimes with my eldest (8) who has ADHD. She rushes everywhere and often runs off.”
3. Aggressive or violent behaviour
Vicki, from London put it like this,”I find it hard to take Sophie out due to her anxiety & behaviour. She lashes out, screams, hums, kicks and generally anything she can to make our time out together pretty stressful.”
Some parents are so upset at their child’s behaviour they wanted to remain anonymous. One told me: “I struggle as he is getting bigger and stronger his behaviour is getting worse and more violent. He attacks me as well when i drive. I am frightened sometimes and also the way people stare at you as well makes me feel uncomfortable as though I’m a terrible mother.”
Shirley, from Glasgow said, “Every outing is a struggle with Blake… his mood swings..his impulsiveness and his temper… I don’t stress about it any longer and I just deal with the situations as they arise and if possible avoid certain situations too.”
4. Sensory issues
One mum shared with me,”My 3 year old needs headphones and music nowadays because he’s become so sensitive to the outside its all too much for him.”
Another, “(my son) has such sensory issues he can’t walk and so I have to carry or push him in his special needs buggy.”
Sarah from Warwickshire shared with me about her daughter, “She suffers anxiety and freezes and shuts down when over whelmed.”
Nadia from Oxford has a pre school child with autism and told me,”My nearly 4 year old son struggles to be anywhere busy/noisy.”
Melanie, who lives in London shared, “I have two children with autism, I struggle to get my six year old out at all , we use ear defenders but she will still ask to go home.”
Stacey from Glasgow know this too, ” I over think when taking zack out and about especially alone because when we go places his sensory issues become x10 and he gets obsessive over silly little things and his climbing is wild people look at me like I don’t know what I’m doing with an out of control toddler – if I did every little thing expected of me and him from others we may as well never leave the house.”
5. Having siblings as well as a child or children with autism
Sonya, from Norfolk is really struggling, “I have a 9yr old child with autism and a 7yr old being assessed for asd/adhd and a crazy two yr old. I won’t take all three out because it’s not safe and once my eldest has a meltdown he takes all my attention leaving the other two vulnerable.”
Victoria, from Leeds, and mum to twins said, “I find it very hard as both children want or need my attention. For Joe to enjoy outings I need to put a lot of effort into encouraging him to take notice and prompt him. But his twin sister equally deserves my attention and excitement too! Neither child understands that and I feel we rush the outing and miss out on things that we would have enjoyed.”
Katie, also from Leeds, completely agrees, “Yes it is impossible. I have 2 children, 5 year old asd and adhd and a 2 year old. My asd child needs my full attention and I need to be running after her etc for her own safety constantly, which would leave my 2 year old alone and unable to keep up and I can’t carry her and run after my oldest. So completely impossible.”
6. Public comments and stares
Jess, from Nuneaton, told me some of her experience, “Its not really the behaviour that i struggle with though…its more all the people around me. A lot of times I get people tutting or telling me to calm him down. He’s a tall boy too and we got a lot of comments about him being in a stroller. And of course im just “giving in to him” when i give him my phone as a distraction tool.”
Another carer, who wanted me to keep her identity hidden told me, “When I take him out, I’m not in control of the situation and it panics me. He will not listen to me, run off, or stim either by flapping or humming. I feel like everyone is looking at me, judging us both.”
Shelley, from Somerset, says, “I struggle with the looks, tuts and opinions of others when my son is finding it hard being out. I accept how to deal with him when he’s having a meltdown, it’s not easy but it’s what we are faced with, it’s the judgement of others I find hard.”
Wendy from the South East coast said it caused problems on her recent holiday, “I have 3 children with autism . I get fed up with the looks the tuts. We had to cancel our camping holiday when they found out the kids had autism.”
Linsey from Lanarkshire concludes with, “the way people stare at you as well makes me feel uncomfortable as though I’m a terrible mother.”
Going out with your own children is something most families take for granted.
So how does this impact families faced with autism?
“Everyday I find myself more housebound” one carer said.
“I rarely go anywhere with them both on my own“, Kirsty, Leeds
“Over the past couple of years it has sometimes been made so difficult that we are housebound unless someone is with us.” Kayleigh, Shropshire
“Everything needs to be planned to the minutest detail“, Sarah, Warwickshire
“Everyday it’s easier to find an excuse to stay at home.” Anon.
This summer please remember the families of children with autism who for various reasons feel they can not leave the house with their own children.
I am one of them.
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.
Take 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%!
One 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!
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