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

The extra stress of being a full time carer at Christmas

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If you ask people what jobs never get time off at Christmas and the majority will list those in the emergency services or health service. These are vital services that we all expect to work through public holidays to ensure our health and safety at all times.

But among those working tirelessly on Christmas Day, Boxing Day and throughout the new year celebrations too are full time carers; unsung heroes who sacrifice their own holidays to care for the needs of others, often at little or even no pay.

Christmas for full time carers comes with so much extra stress as services they usually rely on throughout the year come to a halt for the festivities. When day care, special needs schools, home help and respite centres all have times of closure for staff to have annual leave the full time stay at home carer is the one left to pick up the pieces, work longer hours and ensure continuity for the person they care for.

Then you have the fact that pharmacies, GP surgeries, dentists, clinics and out patient appointments all cease for a few days too. For full time carers coping with loved ones with complex medical conditions this not only causes complications but extra worry. Out of hours call centres have often never heard of genetic conditions or have the training to deal with patients who perhaps are unable to communicate. Taking a person you care for who has complex medical and communication needs to an out of hours GP with little to no knowledge of their medical history brings risks and worries for a carer so they often care for someone at home when otherwise they would be able to access medical support. Getting a person who is wheelchair bound or who does not cope with new environments into a clinic they are unfamiliar with presents extra stress and anxiety for a carer who is perhaps already exhausted themselves.

Christmas comes with an expectation of giving to family and friends. For a carer who devotes their entire life to someone else this brings a huge challenge of finding time to do all that is expected as a friend, a mother or sister whilst juggling the continued needs of a loved one. There is only so many hours in a day and the pressure on carers to be everything to everyone can take it’s toll.

Carers are incredible people though. They take on the role of so many professionals without the pay or training. They do physiotherapy, speech therapy, play therapy and occupational therapy without realising. They provide stability of care, reliability of routine, love and attention that no other service or person could provide. They feed, dress, take care of personal needs and befriend some of the most vulnerable in our society at a time when these people are so often forgotten.

This Christmas Day thousands upon thousands of full time carers will be preparing specialist Christmas dinners for someone they love, who for many reasons, is unable to use cutlery or sit at the dinner table with family. They could be providing pain relief, ensuring oxygen is supplied properly or talking to a loved one as they come out of a seizure yet again. They could be changing nappies or pads, dressing wounds or unwrapping gifts for someone else who can not do it for themselves.

They do it out of love. We owe them our love and gratitude too. It may not be our loved one they are caring for right now but one day it could be.

I am one of those full time carers at Christmas and I know the extra stress that this time of year brings.

To all those caring this Christmas know that you too are cared for. I see the extra stress this time of year brings and I care.

I see you care.

Know that I care too.

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This post first appeared here

Ten tips for surviving the summer holidays with special needs children

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Three and a half weeks ago my children finished up at school and nursery for 7 weeks holiday. Although I love my children deeply I admit I was worried how we would cope with the pressure of looking after both children without any breaks day or night. Both my children have autism, one has neurofibromatosis and other complex needs, and they are both fully incontinent. One of them is non verbal and very delayed. They both have medical problems and need a high level of supervision and care.

So how do parents like me cope with being mum, entertainer, taxi driver, speech therapist, nurse, occupational therapist and support workers to our children for almost two months without a break?

I may not have completed the holidays yet but here are my top ten tips for survival when the kids are at home all the time:

1. Try and keep some sort of routine in place if at all possible.
I have been getting my children breakfast, dressing them and washing them in the same order as I would on a school day. Once they are fed, changed, dressed and clean I have a much better chance of them settling with toys, or a DVD or an electronic device for ten minutes while I get myself washed and dressed. An uninterrupted shower is a luxury but you would be amazed how you can multitask having a shower while also supervising a child brushing their teeth. Thankfully my two are still young enough to not worry about privacy too much. And I do have the advantage that one can’t tell anyone anyway 🙂

2. Don’t feel you have to go everywhere just because you have been invited or there is something special on.
My children have a habit of waking through the night or getting up at 4 o’clock to start the day. By midday they can be tired, grumpy and very unsociable so I try not to commit to many events and go with how the kids are. Busy noisy places are very difficult for both my children to cope with so I thank people for their invites and say we will come if we can. The stress of feeling we have to go is too much for me and then the children feed off that stress. They need time to transition from one place to another and ideally they need to know where we are going beforehand. My daughters anxiety means that just turning up somewhere we haven’t been before would have her very distressed and confused. I may not be at your event but we still love you and I am grateful you invited me.

3. Only do the essentials of the housework while the kids are at home.
Sometimes we have to move house or do repairs while the children are off but if it can wait, let it wait. Trying to make my house into a show room while my children are at home is fruitless and way too stressful. They need clean clothes, clean plates to eat off, a clean floor to play on and a bathroom that is tidy and useable. When they return to full time education I can clear out their toys, redecorate and give the garage a good clear out. Trying to do these with two children at home with high care needs is asking for a disaster. If you missed the five minutes in the morning when my living room was tidy then I apologise. I tidy up at night enough to find the sofa and floor and put my feet up before falling asleep. By 6 am the train track will be back on the floor again for another day of playing with Thomas. One day I will look back with fondness at these times even if at times the clutter of children seems t be screaming at me to get tidied away.

4. Kids appreciate the simple things.
Theme parks, soft play centres, farm parks and expensive garden toys are all wonderful. But someday the children just want to spend time with you. Only one of my children can kick a ball, but the other can lift it up and walk away with it. We have had so much fun in the garden and in local secure parks with a simple ball. Both my two would also happily play in local parks being pushed on the baby swings for hours and going for walks. My son would flap at the bushes all day if I let him. Few of us can afford to take the children to expensive places all summer so I have been balancing trips out with time at home. We have been blessed so far with wonderful weather so parks have become a firm favourite. We have also loved the fact that the sun has made soft play much more accessible as it means the centres indoors are so much quieter. Some centres have even put on special offers to attract customers during the warm weather. We also found out that children travel free by train locally so we have had some lovely train trips. It hasn’t been about the destination for the children but in fact the journey itself.

5. Make home fun.
My daughter had a nose bleed last week and we had loads of bedding to wash and change. Both my children found it hilarious to watch me put on a duvet cover. So I went with it and made it into a game. My son then found some towels drying on a bannister and dropped them down the stairs. For him it was such a fun game. There really is no point trying to explain how this makes more washing and could cause someone to have an accident. He has no understanding of all that. So I went with the moment and had great fun with some towels. Simple childhood fun. If the train tracks are out I am down on the floor playing and interacting with them. If you can’t beat them…join them!

6. Internet and evening shopping is the way forward.
I am blessed to have a husband and although during the day it often takes two of us just to meet the children’s needs, once asleep it only needs one person at home. So I rejoice in 24 hour supermarkets and online deliveries. Trying to drag two 5 year olds around a supermarket is worse than pulling teeth. And sadly food won’t just appear in my kitchen. So we have adapted to work around it. It may not be our ideal but it is just for the holidays. I never thought before I had children that I would say a supermarket at 10pm was a luxurious break. Believe me, during the holidays it is!

7. Choose your battles.
I do this all year round but more so in the summer. My son will only wear his school jumper so why fight. The days are long enough and the nights too short for me to battle needlessly. If my daughter wants a chocolate spread sandwich for breakfast I rejoice she is eating. If it means I can cook a dinner then they can have some time on electronic devices or some TV. Seven weeks of non stop battles would drive us all crazy.

8. Take help and let your children go to friends houses.
If you have other children in addition to your special needs child and they are old enough to do so, let them have some independence. Children, like adults need social interaction. There is nothing wrong in letting friends have your kids for a short while or letting a family member take one out for the day. The holidays are long so take respite when you can. I fought hard to get my son a few days in a play club for children with additional needs. He needed the break and so did we. I missed him dearly when he was gone but we all benefitted from a few hours apart. If someone can give you a night away from the kids don’t let them change their minds. If you have a partner try and take turns if possible. If you are offered care packages, kids clubs or such like use them as much as you can. You are not a bad parent for needing to be without your children. I still struggle with this but I am slowly getting there.

9. Never be ashamed or embarrassed about taking your children out.
My skin is getting thicker this holiday. I hear comments made about my children all the time, from adults and from other children. The more we are out in public and the more other people are out the more obvious it is how different my children are. It breaks my heart how isolated parents of special needs children feel, especially during the summer months. They feel they can not invite other children around to play, or feel trapped in the house because of their child’s needs or feel excluded. My children have as much right to play as other children. Whatever my children’s difficulties they are still children who want to run around a park, be pushed in swings or go on trains. This summer I have taken them more places than ever before even though their difficulties are more obvious. They need to experience more in life and the world needs to see more children like mine to break down ignorance. Yes, people will be cruel but smile, laugh and perhaps pass ancard explaining your child’s condition. They might not change their views but you would be amazed how much more love there is out there than hate.

10. Keep doing what works.
My son is addicted to you tube videos of life doors opening and closing. If it keeps him occupied and happy then I am happy for him to have some time watching them. He uses photographs from the iPad to communicate his needs in a similar way to how he uses photographs at school. If it works in school then I am keeping that up at home. It keeps things consistent and it allows me to know what he wants, at least some of the time. Likewise we are using the ‘first/then’ strategy to get him to do things he finds more challenging. First shoes on then out in the garden is a good example. For my daughter we found allowing her to eat away from her brother (whose table manners would put anyone off eating) has helped her eating. Likewise at times we use TV and dvd’s to allow us to put a washing on or cook a meal. If it works for you, do it!

Seven weeks is a long time to live off very little sleep, entertain two children and meet their needs at the same time. But half way through we are surviving and having fun doing the strangest of things, like changing beds and tipping out water. It’s about survival. It’s about keeping your sanity. But it is also about enjoying your children whatever their difficulties and challenges. I would love to hear your top tips for surviving the holidays with your special children too.

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Is it time to return to routine yet?

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‘Mummy, it’s 3 past 6 o’clock.’

They don’t do lie in’s, my children. They don’t do early nights either for that matter. And my 5 year old number fixated daughter has just discovered a little alarm clock. In true autism style it has become the latest thing to be carried everywhere. And thus we must be informed of the time at every opportunity. Except she can’t tell the time yet so the results are funny, cute but incredibly annoying all at once. Does the speaking clock require a stand in for a day or two?

‘Mummy, it’s 4 and 6 o’clock. That’s breakfast time you know.’

Sigh. I guess I should be happy she wants food when she is such a fussy eater. Chocolate spread sandwich it is again. Oh to try cereal just once.

‘Mummy, the clock moved again! Look it’s 8 o’clock and 6 now.’

‘I’m sure that must mean it is wash and dressing time honey.’
‘Don’t be silly mummy that is 11 past 1 o’clock. It is numberjacks DVD time of course.’

Strange that. Always seems to be numberjack time. Maybe I should change the battery in that clock sometime.

‘Mummy come quick, did you see the clock move again. Look it’s on the 5 now. That’s my favourite number. That’s my number. I think it will go to the 6 next. Yes, I think that. Did you know 6 comes after 5 mummy?. Look it’s 5 o’clock and 6 now isn’t it….’

Oh yes, that means shower time for mummy. Quick check that twin brother is settled on google earth travelling into oncoming traffic on the motorway and mummy is out the room.

And breathe. Surely one has to be safe in the bathroom….

Was that a little voice I heard over the noise of the running water?

‘Mummy, I just had to come show you this. Guess what? It passed the 6 and I missed it. Fix it mummy. It can’t move to the 7 if I missed the 6 can it? Fix it mummy, please. Oh mummy, Isaac is screaming down stairs too. He wants mashed potato again for breakfast but he can’t have that because that was at 6 and I missed the 6 mummy. Fix it now mummy!’

Now I know I have eyes in the back of my head. I know I can cook up a meal for four on just half used bags of all sorts from the back of the freezer, I know I can wipe noses, fix iPads, change T.v channels and catch an escaping child all at once…but turn back time because she missed the six while still dripping wet and naked in the shower? A quick turn of the clock and all is well. Now surely that means 5 minutes to get dressed and ready? You kidding! Remember her brother is screaming for mashed potato down stairs…

So towel tied around me, hair dripping, and glasses still on the bathroom windowsill, this is what I face in my return downstairs.

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Now if only that turning of the clock could mean a rewind of everything for 5 mins! A quick turn on of a lift door opening on you tube and a run upstairs to get ready. Passing the ‘talking clock’ on the way of course…

‘Mummy, it’s passed the 6 now. That means almost 7 o’clock you know…’

I used to take my time dressing, choosing clothes, drying my hair, even stopping to check myself in the mirror. Now I break world records getting ready only checking the mirror to make sure I didn’t accidentally put talc in my hair instead of shampoo.

While dad has returned from hanging out washing in the garden (I am sure this is just an excuse to escape) and little miss talking clock is happy resuming her watching of numberjacks, I check the fridge to make sure nothing got eaten by Isaac in his search for mashed potato, and make him a drink and snack while I am at it. It really will only be a matter of time before he once again screams for that illusive mashed potato. So I offer mr lift door watcher a biscuit. Aghhh, how could mrs asd super-mummy not have known that all said biscuits were indeed broken. Cue meltdown once again.

Time for escape plan A. Trip to the shop. Who cares what time that little clock says this mummy needs a cup of something full of caffeine and we are either buying the shop out of mashed potato or biscuits…but we are NOT buying anything, I repeat anything, number related! At least the boy won’t bleed my ears in the car other than with screaming.

And then he did it. Maybe he wanted out from the constant number and time talking. Maybe he realised this mummy was on a mission. Maybe he actually understood he was getting biscuits. Either way he was just utterly amazing. Walking right through his beloved automatic doors, right to the biscuit aisle, picked up some biscuits and then went to the checkout to pay. Actually if only I could pause time right now. Because this was something incredible. My non verbal, global delayed, classically autistic son just held my hand and walked into a supermarket with me to buy biscuits. He even put them in a bag and walked back to the car with me. And carried them into the house.

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‘Mummy you missed the 9. It went past the 9 and you missed it. I think we should have biscuits at 12. Yes, that can be biscuits time. 12 is after 11 but we are not at 11 yet. Because they are really big numbers. You have to wait a long tome for the big numbers….’

Too late, the boy had eaten three biscuits by then anyway.

‘Mummy, daddy dressed me. But he did it wrong again. He did it at 10. But I wanted dressed at 3 o’clock. I told you that. And he didn’t pause the DVD. So I missed the good bit. You know the bit with 3 launching out the sofa. Where’s my number 3 mummy…’

So in between the clock watching, the never ending time talking, the screaming for mashed potato, the full volume videos of lift doors opening and closing, trips to soft play and parks, we have also somehow managed to squeeze in two visits from the children’s different speech therapists, a visit from the health visitor, a visit to the eye clinic and a meeting at the daughter’s nursery. How did we find the time…

Actually just talk to Naomi about that one. She’ll tell you what number on the clock they all came at, left at and everything else in between.

I love my children. I love being a mummy. But is it time to return to routine yet?