The top ten summer stresses for special needs families


At first it is lovely to not have to cope with the school run or never ending packed lunches to make. It is a novelty to be able to put the TV on and not worry that the kids will be late or that they won’t eat breakfast. I am delighted to not have to wash and iron uniforms (who am I kidding I stopped ironing them by the end of September!) and find matching socks before 8:15am.

These are all great things to get a break from and I do not miss carrying my screaming child out to his taxi daily. But I would be lying if I said as a special needs mum that summer holidays were all wonderful. They are not. I find so many things stressful about having my disabled children with me all the time. I am not alone either. 

Here are the top ten summer stresses faced by so many special needs parents today:

1. Lack of changing facilities. 

I want to take my children to soft play, parks, swimming, museums and day trips. The problem is I have two children who still need nappies changed and both are well over the age of being able to access ‘baby change’ facilities. I need changing places toilets and these are so hard to find. For so many families this lack of toilets prevents them accessing places all year round but it is magnified during summer when children want to be out and about in lovely weather and families want to go out together making memories. None of my friends whose children have no special needs seem to even think about access to bathrooms and it upsets me that such a basic necessity for special needs families is so hard to find.

2. Lack of disabled trolleys in shops.

My son has profound autism and other complex needs. I can dream that one day he will walk around holding my hand helping me but it is a pipe dream. In reality he will smash things, scream, run away from me or wander out the store completely. I need to shop even when my children are not in school. Although online shopping is handy there are days I just need to be able to pick up bread and milk but something so simple is so difficult, and often impossible, if a store does not have a suitable disabled trolley for my son. I have lost count how many shops I have had to walk out before I bought anything because there are no basic facilities for my son. In 2017 this really should not be the case.

3. Lack of playing facilities in parks.


My local park is wonderful. It has a swing seat my son can use and a wheelchair accessible roundabout. Sadly this is NOT the norm and if my son is in his wheelchair I often find myself unable to even access parks due to cattle grids and tiny gates and that is before we even get to see if there is any equipment he is even able to use. Parks should be inclusive not just for the mainstream elite. The stress of not knowing your child can access something as simple as a swing in a play park is common for so many special needs families. 


4. Access

Yes even in 2017 there are shops, play centres, public buildings and restaurants that I still can not enter as my son is unable to climb stairs. Many shops also have displays so close together manoeuvring a wheelchair around the shop is impossible. I am denied access to places my son should be able to visit and I should be able to enter due to inadequate disabled access. The United Kingdom is far from disability friendly sadly.


5. Autism friendly hours that are not autism friendly times!

I am delighted that more and more places are putting on quiet hours and autism friendly times. However as wonderful and inclusive as this sounds they are often at times that are so difficult for my family to access. Early Sunday mornings for example are of no use to my family as we attend church and late at night is no use when I have young children who need routine. Instead it would be better to have a quiet day or autism friendly day once a week that enabled many more to access and enjoy places that otherwise exclude so many. 



6. Lack of respite.

Being nurse, therapist, attending appointments and getting very little sleep is draining. The majority of special needs families have no summer respite and little support through the long weeks of summer. This causes resentment for siblings who fall to the wayside and can put pressure on relationships and cause many carers to struggle with their mental health. For special needs families school offers necessary respite which they can not access all summer long. It makes for a very long summer indeed.

7. Inability to use household items due to sensory issues.

I dare you to use the hoover in my house over summer when the kids are home! Or the hairdryer or washing machine. These are items I use daily when my kids are at school but using them in summer causes the kids to scream and lash out in real pain. Parents of children with sensory processing disorder walk on egg shells all summer just trying to keep their house respectable without triggering continuous meltdowns.

8. Lack of sleep.

I can cope when my son does an ‘all nighter’ when he has school as I can rest or nap while he is out. When your child or children need 24 hour care and you get very little sleep that has to take its toll eventually. By week three of the holidays I have no idea of the day of the week or even my name as sleep deprivation kicks in big time. 

9. Lack of support.

Therapists vanish in the summer, as do health professionals and social workers! While I fully respect everyone needs a holiday it can be so disheartening and stressful as a parent to be left without any support all summer long. It is also detrimental to the children who require continuity and routine. Living with a non verbal frustrated 8 year old for seven weeks with no speech therapists is stressful! 

10. Isolation

Places are noisy, busy, expensive (carers allowance is a pittance!), and the general public can be ‘challenging’, making trips out of the house so difficult. Add to that the stress many families face trying to get their special needs child off of technology and even into a garden and you have some idea how stressful summer can be. For thousands of families this leads them to be isolated in their own home, forgotten and abandoned due to having a disabled child. 
With time, money and planning so many of these stressors could be overcome. A little respite, businesses and community groups installing changing places toilets and more shops purchasing firefly trolleys suitable for disabled children and life could be so much different. 

Have a think. What could you do to make summer easier for a family with a special needs child?



This article first appeared here

Three things that happen when your autistic child is different at home and at school

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I am going through a very difficult time with my son. This morning he was carried to his taxi by my husband and myself kicking and screaming. He was stressed, his sister terrified and I was anxious and worried.
I haven’t called the school and asked if he is ok because I know what they will say.
He is not like that in school

Reports from school don’t marry with the child at home at all. In school he conforms, is settled and appears happy. At home he can be violent, unpredictable and highly distressed. This creates some problems for school, home and professionals. The great divide between home and school is a huge challenge and I am not alone in struggling with this.

When my autistic child is different in school it makes parents feel they are to blame.

When the common denominator for the challenging behaviour and meltdowns is home it is all too easy for professionals and schools to jump to the conclusion that bad parenting is to blame. We are accused of lack of discipline, lack of stability, lack of structure, feeding our children the wrong food and even not loving them enough! Just because a child has the ability to ‘hold it together’ in a very controlled environment all day and releases the lid on their frustrations, stressed and anxieties at home does not mean home life is awful. In fact the opposite is true! If a child did not feel secure, loved and safe they would continue to ‘hold it together’ at home for fear of releasing their true feelings.
Instead of blaming parents, schools and professionals should be more understanding of the difference between home and school and more willing to listen when their ‘perfect’ child is presenting totally different outside the school gates.

When my autistic child is different in school it makes accessing support very challenging.

So many parents know their child needs support from CAMHS or social work or speech and language but continually get denied these services due to presentation within a school setting. It is frustrating and damaging for so many children who put on a front within the classroom but who inside are screaming out for help. The system is loaded too much to the side of education where if referrals are put in from schools these are readily accepted yet a parent refers to the same service and the referral is often refused. There is still a huge assumption in the system that if a child truly had problems these would manifest in all settings the same. So parents get left to pick up the pieces of broken children by themselves with little support and hundreds of vulnerable children fall through the system because they are ‘good’ in school.
Perhaps if schools spoke to children or were more aware of stresses within the classroom environment for children with autism like noise, lights and the stress of conforming all day they may be more willing to support referrals for children who seem like Jekyll and Hyde.

When my autistic child is different in school it appears I am lying.

I have been at the meeting when all eyes are on me and I know they think I am lying, or at best exaggerating. I should never have to do it but I have resorted to videos and photographs of my child at times to prove that what I say actually happened. Would staff at school have to do this if the opposite was true and he was angelic at home but violent in school? Everyone at the meeting would be jumping in to support the teacher or school support staff if they were scratched or bitten or pushed by my son but as his mother it is seen as outrageous that I accept this behaviour at home. When I mention strategies we have put in place to help support my child at home and how these are not working some days they once again assume I am lying. It makes parents feel so alone, so belittled and unworthy. We already feel like a failure and those feeling are just made worse when schools give more and more examples of wonderful behaviour at school in answer to every incident at home that is mentioned. He punched his sister at home but shared his pencils with another child in school the same afternoon! He had a complete meltdown over homework yet got full marks in his spelling test the same day! It can be the same child and the sooner professionals and schools understand this the better for everyone. Have they never been professional and polite to someone in their job only to go home and let off steam by moaning at their husband or shouting at a driver who cuts them up?

I know what it is like to see my child happy, flappy and a delight to be with. I also know how hard it is for him and myself to see him so distressed he can not control what he is doing. Like thousands of other autism parents I experience the great divide, the Jekyll and Hyde of autism, on a daily basis.

Put me into different environments like an interview, a prison, a party or a holiday and you will see me change to suit my environment. My child with autism is no different.

I need people to see this and understand.

How a church changed summer for one special needs family

 

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One email.

That was all it took.

A lot of courage but just one email.

Last summer was so hard and I knew I could not face it again so I swallowed my pride and dropped my Church office a note.

‘Could anyone help me out?…’

They responded quickly. They responded lovingly. They reached out and changed my entire summer.

A few weeks before the schools broke up I was asked to meet with them. They had ideas and I had ideas and we discussed simple ways people, many we hardly knew, could help us through the challenges of seven weeks holiday with two complex needs children.

I suggested perhaps one meal a week that I didn’t have to cook or prepare. They went above and beyond and hand delivered up to three meals a week, some of them arriving still hot and ready to be served. Roast chicken, bolagnaise, curry, home made cakes, puddings, side dishes and sometimes even a starter too! That someone would take the time to buy ingredients, cook a meal and deliver it just for us is truly overwhelming. Every little pea, or grain of rice shared spoke of love in action.

It was suggested that people could sit with my children to allow my husband and myself an hour for a coffee. One hour during the holidays would have been amazing but once again they went one step further and my children looked forward with excitement to the two ‘best babysitters’ who came once a week for a couple of hours whatever the weather. Two hours out of their week but that time to me was like a wave of respite and sanctuary in a stormy ocean. It also had the added bonus that every Sunday my children ran to the two woman, desperate to see them again and connect with them even more. Every minute of time spent together sowing seeds of love that will change both my children and the precious ladies.

imageAnother couple invited me to bring the children to her house one day. Neither of us were to know it would be the hottest day of the summer and the children had a wonderful time in a paddling pool (well my son preferred a plastic crate!) and watering plants. Precious memories for me, the children, but also for the couple who also enjoyed a wonderful day shared with friends. My children were able to be themselves without imagepressure or stress and their needs almost disappeared as quickly as the water did from the paddling pool when my son decided to tip it out! One day; a million memories made.

I mentioned at the meeting that there was one day I could not even begin to face that summer. It was a day I had dreaded for months as I could see no practical solution in sight. I had a very important hospital appointment to attend in a hospital miles from home that would take hours. Due to the treatment I needed it was not possible for the children to attend. The appointment could not be cancelled and I had no idea how I was going to do it. In stepped the church once again with a plan. What did my children like doing? Where was their favourite place to go? What do they like eating? And so, with tears in my eyes, a plan was formed. My non verbal, severely autistic, lift loving son, would get to go on his favourite lift tour on a train to the city with three adults to support him. I would provide nappies, clothes, money and anything else and they would provide the manpower. Meanwhile my autistic, nervous, selective mute daughter would be looked after at home in the comfort of her own surroundings to keep her anxiety at bay. How do you ever replay people for giving you something like that? It would be no exaggeration to call them angels.

imageIn among this I received texts of encouragement, prayers, hugs and someone even delivered nappies that they saw advertised for free on social media and thought about me and my son immediately. In fact I felt so encouraged I began fundraising to build my children a sensory room and with the help of the church all the funds were raised within just four weeks. We are currently building that now.

This summer has been so different to any other. For the first time I have not felt isolated, forgotten or alone. My church changed summer for my special needs family and I can not thank them enough.

Matthew 25:40 (NIV) “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

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.

 

 

 

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

The Insignificant Mother

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It started before the meeting even began. Emails, phone calls and discussions between you all to synchronise diaries and finalise a time and location that suited everyone. Everyone, of course, except the insignificant mother. My diary was never checked. No-one asked if the time suited me or if the location was convenient. As long as the ‘professionals’ are fine with it that is what matters apparently.

You all had weeks of notice. I received the letter in the post just days before. You all knew the agenda, I didn’t.

So here we are all sat around the table. I notice you all smartly dressed, folders and pens at the ready and reports all prepared, while I sit there in yesterday’s clothes trying to remember if I got around to brushing my teeth this morning or not.

Introduction are done and apologies made, yet a few chairs still lie empty. It seems some of you have not turned up, again. I realise that every person in the room is paid to be there, except me. This is everyday stuff to you all. Meeting are your norm. Not for me. I am not sure what you all think I do all day or even what you all think of me at all. What I do know is that none of you feel I am important enough to be given a title. The sign in sheet asked me to list my profession and just as I went to write ‘parent’ one of you says ‘you can just leave that bit blank’.

You all get your turn at discussing my child like you know them so well. I want to scream at you when you don’t even say his name right or know his age. I am told to wait my turn. Each person talks about my child like he is a number. He is just one of your case load, a child you will soon move on from, either by discharging or he moves on to another class. I guess I am at least thankful you made the effort to come. Sadly some of your fellow professionals never even gave my son that honour.

I wonder if I will ever get to speak. I have no prepared report to give you all or targets I have achieved. He made it to school today, does that count? He even had breakfast..that surely gives me bonus points?

“Mum, do you have anything to add”, so you actually noticed I was there after all! I have lots I could say but does it really matter? If I disagree with anything said it gets recorded as ‘not engaging with professionals’, if I talk about home life I am reminded ‘we must stick to the points in question’, if I ask to be reminded of something that was discussed ‘we have covered that point and you will be able to read it in the minutes’. What do you actually want me to say? What you really want is me to tell you all how wonderful you are and how grateful I am for your input. You want me to pat you on the back and boost your ego and bow down to your authority. You all hold the power in these things and I am just the insignificant mum.

The meeting closes. You all return to your cosy offices, your clinic appointments and your computers.

I return home to the non verbal screaming child. I return home to the little girl refusing to eat. You can tick you box to say you had your meeting, you can record who attended and who didn’t. Please do send me the minutes to file away with the large pile of reports and factsheets I have already.

One day I may get around to reading them. Right now I have a diary full of hospital appointments and two children who need a huge amount of support. You may like to record at your next meeting that the person providing all this support day and night, unpaid, and out of love, is the insignificant mother.

Insignificant to professionals maybe, but hugely significant and loved by the two people who count the most.

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