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

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I put him to bed some nights and cry


Loving my son is easy, living with him is not.
Some would say he is controlling, a bully, self centred and aggressive. These would all be correct.
He is also frustrated, anxious, stressed and agitated.
No anger course, or therapy or counselling will help him.
He is 8 and can not speak. He is still in nappies. He has no sense of danger. He can scream for hours, smear, attack and demolish all in one day.
Yet he can laugh a deep laugh that is so contagious he makes everyone smile. He can flap and find utter delight in lift doors opening for hours.
He is the apple of my eye and the delight of my heart but some nights I put him to bed and cry. 
I cry for the life he is missing out on: The lack of friends, the inability to read and write, the fact I have no idea when or if he will ever be toilet trained. I cry because he is misunderstood and judged so much. I cry because he can not tell me anything like how he is feeling or what he likes. I cry because he is so vulnerable and that scares me. I cry through exhaustion having to constantly guess what he wants and why he is so upset. I cry through years of sleep deprivation, lack of support and the stress that something as simple as an open door makes him throw himself down the stairs in distress.
I put him to bed and cry because I do not want him to see my tears. I never want him to feel he disappoints me. I never want him to feel rejected or unloved. 
But I need to let the tears out. Pretending this is ok is not helping anyone.
My son has severe autism and it is very hard. My son has neurofibromatosis type 1 and that scares me. My son is vision impaired and that worries me.
His list of diagnosis and difficulties is comprehensive. He requires 24 hour care and relies on me for everything. He will need care all his life and his condition is progressive and unpredictable.
He brings me great joy but caring for him exhausts me.
Loving him is easy, living with him is not.
I love him more than words can say but I put him to bed tonight and cried.

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50 Reasons Why We Still Need Autism Awareness Month

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You are probably thinking this is going to be a heck of a long blog with a title like that. What use would that be? I have no intention of boring you so I will cut to the chase.

If you have ever wanted to know why we still need autism awareness days or months or awareness days for any other type of condition here is why…

These 50 comments are all from the general public and each and everyone of them were actually said to a family with a child with autism or additional needs.

This is why I keep writing about autism. This is why we need people to talk about it.

1. Now your child has glasses it will cure his autism.
2. The best way to stop your child from smearing is to change him more often.
3. Your child’s difficulties are because you worked while you were pregnant.
4. Your children have autism because you don’t love them enough.
5. They probably have autism because they are twins. Twins always have problems you know.
6. It is because you had post natal depression. You are to blame for your child being disabled.
7. Your child is like that because you are not strict enough with them. They would never be like that if they were mine!
8. Are you sure they have autism? They don’t look autistic to me!
9. Vegetables, your child needs to eat more greens and then they will be fine.
10. It is because you breast fed them for far too long!
11. Your child needs to control themselves better.
12. Are you sure it isn’t you with the problem? Have you thought about counselling?
13. You must have really done something terrible is a past life to have a child who is blind.
14. Have you tried praying more?
15. She is non verbal because you don’t speak to her often enough.
16. He is just lazy.
17. They never had anything like that in my day you know.
18. He’ll grow out of it.
19. Have you not thought to use essential oils?
20. They just need a good smack.
21. Once he starts talking you will never know he has autism.
22. Disability is just a excuse for poor parenting.
23. Your child has that because you neglected them.
24. It is learned behaviour because their brother has it. They are just copying you know.
25. He just has too much screen time. Take his iPad away and he will be fine!
26. All kids do that.
27. It’s just because you have anxiety. That makes a child disabled.
28. She isn’t talking because you are deaf so you can’t teach her!
30. He’s fine in school you know!
31. Fillings. If you have fillings in your teeth it makes your child disabled.
32. Peppy Pig is what makes your child autistic.
33. You need to feed them the right stuff. Organic, gluten free, sugar free, wheat free…
34. It was probably for the best you had a miscarriage as you would not want another child like your son would you?
35. Cool they have autism! What’s their special gift?
36. He’s always fine with me you know!
37. It’s because you and your husband separated.
38. There’s no chance he has autism because he gives good eye contact.
39. There’s no chance you have autism…you have a job!
40. Are you sure they actually got diagnosed with that?
41. You just sent her to the wrong nursery!
42. Vaccines. I got my child immunised and made them disabled.
43. They just need more fresh air.
44. Dirt. My house is too clean and that has caused my son’s autism!
45. Have another child. If he has someone to play with he will be fine.
46. She can’t have autism, she’s a girl!
47. She is way too social to have autism you know!
48. You do way too much for him. Doing that makes them disabled.
49. You just want people to feel sorry for you because you have a disabled child.
50. Mixed race marriages. It isn’t right and that is why your child has problems!

Are you shocked? Angry? Upset?

So was I.

Ignorance is still rife and until people realise how wrong and hurtful comments like this are I will continue to write about the reality of my life.

You may have heard about autism but do you really know what it is?

It is alright to not know but it isn’t ok to say any of the things above.

I just hope and pray that every awareness day, every awareness month and every blog I write goes some way to dispelling some of these awful comments.

Until then I will talk about autism in all its reality, splendour and wonder.

Because I never want these two to ever have to hear any of those 50 comments, ever!IMG_0725

 

Five Christmas gifts to give to a special needs parent

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I used to think it was only children who were asked in December ‘what would you like for Christmas?‘. It seems as a parent I still get asked this. I tend to answer like most parents do with a simple ‘oh I have everything I need already thanks’ or the soppy mum variation of ‘my kids are all I could ever want and more.’

Both are true to an extent. My life is very full of smiles, blessings, love and joy but as a full time carer for two children with extra needs life is also very full of other things like hospital appointments, meetings, therapy and endless paperwork!

So what would be good Christmas presents for a special needs parent like me?

How about the following:

1. A listening ear.
We all have our own burdens to carry and none of us are without problems in life, yet so often we become so engrossed in our own busyness we forget to take time to listen to others. Giving me your time to just talk while you listen without judgement or trying to ‘fix’ things is one of the greatest gifts I could get all year round. Come visit me at home while we have coffee, or sit with me in the hospital waiting room. I may seem like I am coping but silently I pray for someone who cares enough to listen to my worries and my struggles. If you can’t physically be with me being at the end of a phone or even letting me let off steam via email or message is such a precious gift. You may not be able to wrap up your ears under the tree but if you could loan me them sometimes that would be amazing.

2. A shoulder to cry on.
Some days are just overwhelming. Some mornings by the time I have managed to get the children safely to school I am exhausted and emotional. Lack of sleep, worry for the future and constant battles on behalf of my children become weary. I, like so many other special needs parents, long for a safe and tender place to cry where we feel free and accepted to pour out our hearts. We need that release in order to gain strength to face another day. We need to let the stress come out in our tears knowing there is no shame in showing weakness. Could you be those shoulders? Will you let me cry without question and hand me the tissues without needing to tell me I am over reacting? That would be a gift that can not be measured this Christmas.

3. An encouraging word.
Few people truly realise how negative the world of special needs parenting can be. Forms ask for things your child is unable to do, assessments focus on your child’s shortfalls, teachers comment on how your child is not hitting targets like the others. Hospital appointments bring news that breaks your heart and even the simplest appointments like the dentist are utterly draining. Then add the guilt that your child can’t talk, or walk yet or play like other children. While other children achieve at sports, or drama or art your child excels more at loud outbursts, screaming endlessly or staying awake all night. Encouraging words are few and far between in my world so a little text, or message or a simple smile goes a long long way to helping brighten my day. An unexpected card saying ‘I care’ is like an oasis in a drought. It is beautiful, precious and priceless. You simply can’t give this gift often enough to a special needs parent.

4. Practical help.
I would never expect anyone else to have to see to my children’s personal needs nor do I expect anyone to be up all night long with them. However, there are some small very practical things though that anyone can do for a special needs parent that can make a huge difference. How about holding the door open when you see them pushing a wheelchair? Or holding the lift to save them waiting longer with a distressed child? If you see them carrying a child into a car seat in the supermarket car park why not offer to take their trolley back for them? These small gestures of kindness mean the world to someone who often feels ignored or invisible. Kindness and practical support never ever go unnoticed to a special needs parent and they restore our faith in humanity. Christmas is an ideal time to make a special effort to help the special needs parent as places are busier, louder and more chaotic than usual but remember a little help all year round would never go amiss.

5. Finally be respectful.
It is so easy at this time of year when the weather is awful and time is tight to just park in that disabled space for two minutes while you just nip in for bread. You may never ever think of doing that at any other time but for me as a parent of two disabled children this is a time when I need those spaces even more so. The same with the disabled toilet. I understand this time of year means most public toilets have queues and you don’t mean to upset anyone. However, these facilities are so precious to families like mine and our loved ones need that space and privacy to have their personal needs met by someone else. We don’t have the privilege of being able to wait. Please don’t push that disabled trolley away in your haste to get to the smaller on at the back. Having a soaking wet trolley may be annoying to you but to those of us who rely on specialist seating for our disabled children having an icy, snowy seat prohibits us from going shopping at all. Your thoughts and respect at Christmas mean a lot.

I realise now I do actually want a few things for Christmas this year. I want friendship, time, love and respect and those are not things money can buy, yet they are the most special and perfect gifts any special needs parent could want not just at Christmas but throughout the year.

Could you give me any of these? Do you know a special needs parent who could do with some Christmas magic? Let them know you care today. It could make this Christmas the best one they have ever had.

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This post first appeared here

The secret epidemic affecting special needs parents

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I had a message from a fellow special needs parent this week. Two words of that message have impacted on me greatly. She wrote:

I’m struggling

It is so common for me to hear this. It is the centre piece of every support group, the most common theme on online  forums, the single most heard words when I meet up with people.

For some of those parents it is so bad that I encourage them to see a doctor for support.

In my years as a special needs parent I have found there is a secret epidemic affecting so many special needs parents and it needs talked about: We need to talk about depression.

Depression in the special needs mum or dad is so understandable but too often goes unnoticed.

People see a mum crying and think she is having a bad day. What they don’t know about is all the other nights she cried in private and no-one knew.

My eyes are more tuned to see people struggling since I have walked that path. I know what it is like to look at my child and worry for his future. I know what it is like to feel there is no hope. I recognise that feeling of failure when you realise your child is just not developing as they should. I know the pain of taking your child to hospital when they should be outside playing with friends.

It is isolating when your child has special needs and it is ok to admit that.

Society sadly expects us to be positive, upbeat and encouraging and often I see parents who are so emotionally overwhelmed, so sleep deprived, so beaten down by the system, that they have so little hope.

When you have a child who struggles in school everyday, a child who won’t eat, or has no friends, or is being bullied for being different, or who can not play in a park as the equipment is unsuitable for their needs, how would you feel? If you child was denied the support they need, or could not communicate, or is living in pain every day would you not be heartbroken?

Is it any wonder there is an epidemic of depression among parents of children with autism?

While so many are on medication, and this is vital, we also as a society need to recognise that special needs parenting is exhausting and draining.

Medication is wonderful but what about better support and understanding for our children, better care for those in society who are full time carers, training for staff so they can better meet the needs of the most vulnerable, and a society less prone to judge and quicker to encourage?

The current epidemic of depression among autism families is concerning but what worries me more is that continual budget cuts and ignorance in society is breeding not only depression among the parents but sadly I am now seeing siblings, and even special needs children themselves, struggling with the same issues.

We need to recognise this epidemic and do something about it now.

Don’t ever be afraid to tell someone you a real struggling. Don’t ever be afraid to ask for help. Together we can support each other and help make a better future for us and our children.

 

This post first appeared here.

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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