Summer holidays for autism mums ... the reality!

These last few weeks my newsfeed has been awash with summer survival guides. Practical hints and tips for busy mums and dads to help us get through the long 6 week break, with the use of wine and coffee featuring heavily in most of them. And there is no end to feel good articles about beach holidays and top ten tips for everything summer related. But more often than not they seem to bear no resemblance to my life at all so I find myself scrolling on by without a second glance.

I myself as a blogger have jumped on the feel good summer vibe and written some of these very articles. All very pleasant enough it has to be said, but just a bit too ‘fluffy white clouds on a summers day’ for my liking really.

Because for me, the reality of summer can feel more like drizzle and thunder with occasional bright spells, rather than fluffy white clouds and wall to wall sunshine.

And I became tired of feeling that my life didn’t matter because no one out there was talking about the darker side of the summer holidays for families like mine.

Families living with autism.

But our experiences are worthy of being heard. The reality of summer for families like ours needs to be acknowledged and listened to, not brushed under the carpet and ignored.

Because our reality makes us feel like tearing our hair out with stress at times. The long expanse of summer can leave us exhausted and feeling like we’re simply not good enough to do the job of parenting our children. Vital services stop, support and contact are non-existent and we are faced with 6 weeks of nothingness to fill. With many families not even being able to leave their house due to lack of appropriate toileting facilities within our local communities.

So today I want to tell it like it really is...

To share the reality for many thousands of mums like me this summer.

In my ‘top ten tips’ for summer I had brushed past the days in which some of us can feel trapped in our own homes like prisoners because our child is so anxious to go anywhere. With social media and catch up TV being our only contact with the outside world for days at a time.

And I didn’t mention those days that we brave going out; only to have to return home after 30 minutes of anxiety and sensory overload, that lead to a meltdown and all eyes glaring at us as if our children had no feelings worthy of compassion or dignity.

I failed to mention the aggression and violence that we face when the anxiety monster swallows our children and we become the punch bag. The mixed emotions this leaves us with and the reality of our lives behind closed doors that no one talks about.

Or the days where we can’t scrape enough money together to take the kids on a day out because we need a second mortgage these days to be able to visit any family attraction. And the despair we feel at how other families manage it because we are barely managing to get by on carers allowance and minimum wage.

I glossed over the days when we are ready to explode after dealing with all the bickering, and sibling tensions. And how we just want to run out when our husband walks through the front door after work. Or we bite his head off when dumps his shoes on the lounge rug and we trip over them because we have had such a crappy day with no way of venting all that pressure, so we take it out on him.

I brushed aside the pressure that is put on marriages like mine because we never get to spend any time together.

In my feel good blogs I failed to mention the messy houses we find ourselves living in all summer long with no break. The flooded floors and cereal covered kitchen tables, the mountains of laundry and piles of dishes that seems never ending…day after day despite our best efforts to keep the house clean.

And it’s hard to admit the resentment we can feel when we see our friends Facebook posts of happy smiling faces on the beach. On bad days these pictures can make us feel like we’re living in a parallel universe to the rest of the world. A parallel universe that you didn’t ask to be on and sometimes find it hard to accept.

And not to mention the guilt we feel for our other kids. Not being able to spend time with them, not being able to do what they want, or them constantly having compromise to accommodate our child whose needs have to come first.

I missed out how peoples passing judgements and stares can make us fearful when taking our children out during summer. Those days when we don’t feel like donning our armour, because we just have no fight left. And all we want to do is curl up on the sofa and make it all go away. Why can’t we live in a world that accepts and understands our child’s apparent ‘naughty behaviour’ for what it actually is…. anxiety and sensory overload.

I missed out the sense of failure and guilt we can feel as we tell ourselves that we aren’t good enough.

Motherhood should be easy we tell ourselves.

Why am I struggling?

I should be able to do this.

To ask for help is a sign of weakness.
                   

What did I do wrong to deserve this?

And then to top it all off we feel guilty for thinking all those things in the first place because we love our children more than life itself and wouldn’t want to change them.

But the fact of the matter is that the 6 weeks holidays are tough. Tough for any family. And when you have a child with autism or additional needs the strain increases.

So please if you found yourself reading this to the end I won’t patronise you with any more ‘top ten tips for summer survival’ but let me instead tell you this…

You are good enough.

It’s OK to have bad days.

It’s not a sign of weakness to accept help when it is offered.

Don't believe everything that you see on Facebook, no- one’s life is that perfect.

The holidays are tough for all of us, you are not alone... believe me we all lose our patience sometimes!

Don’t feel guilty.

It doesn’t mean that you don’t love your children because you’re finding it hard.

There is an end in sight.

Your other children will be OK, in fact they will grow up with more compassion and understanding than other kids their age.

Sod the housework, and don’t stress over the laundry as real friends won't even notice and even better friends will ask you where you keep the iron while you make them a brew.

You need to look after yourself.

It can put a strain on your marriage but communication is key; men are useless mind readers, so talk to them.

There is always someone in your online tribe that can offer you a boost should you need it.

We can do this together!

And if all else fails my lovely fellow mummies…well like the feel good blogs tell us, there is always wine!

Your as ever
Mrs M x

My top ten tips for going on holiday with an autistic child

So it’s that time of year again folks when we all start thinking about holidays. Fun, sunshine and family time. Sound idyllic doesn’t it? But holidaying with a child with autism can often be prove to be more stressful than relaxing. What with visiting lots of new places, having to sleep in a different room, our expectations that we must all be having fun fun fun, and siblings not getting on can all lead to a family that actually needs a break after the holiday is over! Kind of defeats the object really doesn’t it?

Believe me when I say that I have been there and worn the T shirt inside out so I get it. I think as mums we see our friends Facebook pictures of happy smiling kids around the pool, selfies with a cocktail and trips to fun destinations… and we think to ourselves… yeah I want that too! That will be us this year. ‘Happy families are us’.

But like with most things in life, it never go to plan. It either ends up raining every day, the kids can’t seem to be in the same room as each other without arguing, or I’m too tired and exhausted to relax. So by day 5 usually I can just about muster the will to put the kettle on to make a brew, never mind have a cocktail by the pool!

We have had some stonkers over the years let me tell you. I had a meltdown in a carpark in Wales one year. My son ran out of his tent half naked at 3 in the morning a few years ago as he was sleep walking (he narrowly avoided the guy ropes of our fellow campers, however unfortunately I was far less graceful!). Oh and our tent nearly blew off a cliff with us in it one year, we have flooded many caravan showers over the years, and another time we came home early from Devon as my son wasn’t sleeping…at all… for almost 5 days.

But I think the icing on the cake for me has to be when we went away in a large family cottage with my poor unsuspecting family and ... well let me put it this way we said it would never happen again ha ha!

So believe me when I say I am a seasoned pro at all things holiday. The good the bad and the darn right ugly! So whether you’re braving a tent in Yorkshire, a cottage in Devon or a week in the sun -here are my top ten survival tips from a fellow parent who’s worn the t shirt and is still here to tell the tale…

1.       When we have attempted to go abroad in the past, we got a note from the doctor outlining our sons’ conditions and an explanation of why we needed to carry a vibrating cushion on the plane! You can imagine the looks we got can’t you? Being stopped at baggage check as they pulled this funny looking vibrating cushion apart; batteries, wires and all. But the cover letter was vital and they accepted it with no fuss… just a few giggles!

2.       Most airports do fast track facilities for children with autism. If you contact the airport all it usually involves is filling in a form and your child can be issued with a wristband that allows your group to jump the queues. This helps my son immensely as queuing and waiting around is the big challenge for us at the airport.

3.       We also carry a ‘kit bag’ wherever we go. For us it includes his IPAD, earphones, fiddle toys, gum, snacks, tick list or visuals, spare earphones and sometimes a weighted jacket. Of course each child is different so each kit bag will be unique.

4.       Once we are there my son like many other children doesn’t like wearing sun cream. So we buy UV tops that cover his arms, shoulders and back etc. A spray lotion or roll on can work well too for some children as they are often less thick and sticky. As can letting them apply it themselves for those who don’t like being touched. It may also be worth timetabling in how often it needs to re-reapplied as kids can assume once it’s on it doesn’t need to be put on again.

5.       Getting my son to drink in the heat can be tricky, but the minute I freeze it and turn it into a slush he loves it. So I can usually get fluid into him that way when it’s really hot.

6.       When holidaying in the UK we tend to travel within a 2 hour radius of our house. We literally put a compass in a map and circle our ‘catchment area’.  As being in the car for too long is never easy for children with autism. So we plan our stops at each service station, do a social story telling him the key points of the journey and take lots of chargers/ tech and his favourite snacks to keep him occupied in the car.

7.       We also take his own covers and pillows etc. that we put on his bed once at our destination. Having his own covers can help him settle. But we always know that nights are going to be tricky as sleeping in a new room with new sights, smells and sounds can be really hard for children with autism, so we mentally prepare ourselves for a bad first couple of night. We also find that taking any lights that help him child to settle (despite the fact that the neighbours in the caravan next to us may think we’re raving into the early hours with the flashing lights on the ceiling - if it helps him to settle then we take it).

8.       A day in, followed by a day out can also work quite well. We often find that if we have visited somewhere one day my son needs a rest day to recover from the ‘social hangover’ that being social creates. So chill around the cottage one day, take a book and read a few pages with a coffee and a Hobnob…and let your child spend some time on their special interest. Believe me I learnt the hard way that you don’t have to fill every day full of activities. It’s ok to watch a DVD, sit in the garden or chill in the room on the balcony sometimes.

9.       I suppose the biggie for me is this……don’t worry too much about what other people are thinking. I know sometimes we can feel eyes on us when our child is in meltdown mode or finding themselves in sensory overload. But remember when your child is like this it’s often because they have reached saturation point and need support and calm to get through it. So let people stare, who cares!  (It does get easier I promise and eventually you will develop a thick skin to people’s comments and stares in time).

10.   And finally have realistic expectations. No family is perfect. No one ever has a stress free holiday despite the Facebook pictures painting an idyllic picture of happiness. It’s simply not true. People argue, get cranky and sometimes feel overwhelmed with it all. Families are not used to being in each other pockets 24 hours a day. So take turns, have a break, do a day in a day out, or whatever works for you and your family! Holidays are not about what everyone else expects you to do. And generally we find that if our son is happy… then everyone else is happy it’s that simple really.

So be content to holiday out of the box, do what works for you – ignore the stares and roll with the chaos…(oh and maybe book yourself in for a relaxing back massage once the kids are back at school as you will most definitely deserve a pamper session!)

Mrs M x

This blog was written for FAMILY FUND and the original post can be found here-https://www.familyfund.org.uk/blog/my-top-10-holiday-survival-tips

Transitions in school and autism

It's that time of year when our children begin to think about moving to their new classrooms or new schools. This can be a really anxious time for children on the spectrum (and for us as parents too to be honest) as there is so much uncertainty, and change that they have to cope with .As well as all the mixed emotions they could be feeling about leaving teachers behind that they have learnt to trust over the years.

So our job as parents and teachers is to reduce this anxiety as much as we can, and we can do this by removing as many unknown elements as possible.

So here are my top tips for home and school in helping children during this difficult period of transition.

1. Preparation is key. Write down all key dates for visits well in advance and ensure your child knows exactly what will be happening. It is worth noting that it can be a fine line between telling children what's happening too early and not early enough. I know if I tell my son some things too far in advance he won’t sleep for weeks, but one week ahead for him is about right. As each child is different this may need to be tailored to each individual child you support so home/ school liaison on this is essential. 

2. Take it at the child's own pace. Don't rush them. Some children may respond better to lots of small visits to their new classroom/ school, rather that jumping straight into a full afternoons visit. It could be that you meet the new teacher in a familiar space, then visit the gate, then the door, then the hallway etc. and build it up slowly.

3. Don't underestimate the help visual support can offer. Take photos of everything - the staff, the room, the entrance, the toilets, and the cloakroom etc. and put them all together in a booklet that your child can look at over the summer. Also ensure the child's familiar visuals and resources are in their new classroom every time they visit.

4. Visit new settings when it’s quiet. It may be too much for your child to visit the new setting with all the class. So an initial visit when the room is empty can help them get used to the new environment with less chance of sensory overload.

5. Create a moving on booklet that your child can work through in advance. Include things like; all about me/ my strengths and talents/ things I find hard/ how I communicate/ how to help me/ how I learn and ensure it is shared with all staff. 

6. Don't assume they aren't anxious just because they don't tell you so. Many children on the spectrum find it difficult to express their emotions. So working through all the usual things that children worry about particularly for older children could help them express their concerns; making friends/ how they will get around school/  homework/ getting lost/ bullying etc.

7. Staff handover is essential. I know it’s easier said than done but spending time with the staff that have worked with the child, meeting the parents, reading through their pupil profiles, and observing them in a comfortable environment is so important. Not only will it give you the opportunity to get to get to know how they learn, but the staff will know all the subtle signs to look out for. Like how they chew their sleeve when they are anxious, or how they need to be at the back of the line as they don't like people bumping into them. All this is really useful to know as they settle into your new class.

8. Good communication with home is vital more than ever at this time. Although school may not be seeing signs of anxiety, it is quite likely that home will. So make sure things are written down as children can forget verbal instructions once at home and could miss key events which leads to added stress at home. Also be aware that school refusal can increase at times of uncertainty and stress. So good communication and links with home to see how things are going are essential. It may be that the child needs a bit more down time at school, or more access to sensory activities. They could be struggling with the change in routines that this time of year often brings but may masking their anxiety. All these things need to be considered in the last few weeks of the school year for pupils on the spectrum.

9. Prompt cards can be useful. These can address specific anxieties that each child may have and can help them know what to do. For example -

If I arrive late                                             

It will be OK                                  

No one will be cross                                    

I go to class as normal                                       I can explain to my teacher

I will then sit down                                       

(Just having these written reminders can help reduce anxiety for children on the autism spectrum.)

10. At home things that can help are; practising the new journey to school/ looking at and trying on the new uniform and removing any labels or wearing shoes in / using a calendar at home can help children organise their 'mental countdown’ for the back to school start date in September/ and finding out who your new Senco or school contact will be.

Here are some links to great resources that you may find useful ...

NAS Guide to transition

Autism Trust Transition toolkit

Supporting transitions Bradford.gov

Leeds autism transitions booklet secondary schools

And here is useful checklist for Primary to secondary schools

Transition from Primary to Secondary

A checklist for students currently in Year 6

Current Primary School

To be completed in consultation with receiving secondary school	Who responsible?	By when?	ü
As soon as secondary school is known liaise with Primary SENCo to list key dates for visits/ meetings etc.
Arrange extra visits to receiving school which have a specific purpose which is clear to the student and what they need e.g. visits may take place at different times of the day, favourite subjects/ registration/ lunch/ breaks/ different days. Give consideration to who the child visits with e.g. TA , parent, friend from the primary setting. Be aware: starting visits too early can cause anxiety to some students.
Identify key adults/ workers in the receiving school and arrange for the student to meet these adults when they visit.
Relevant staff from receiving school to visit present school.
Detailed information relating to individual child’s strengths and difficulties for the receiving school.  Alongside assessment data discuss transition with the student help them prepare for change by making a personal passport e.g. in the form of a booklet or PowerPoint presentation etc in which they write about themselves and which can be given to the receiving school. Involve parents in this process and encourage them to support their child in making and keeping this record. Areas might include: Likes and areas of strength Dislikes and areas of difficulty Strategies proven to support student Agree on how information can be shared with all staff who come into contact with the student.
Complete and record activities related to changing schools which they can keep and refer to over the Summer holiday.  Involve parents in this process and encourage them to support their child in making and keeping this record. Areas might include: Providing details of the school e.g. plan of the school site, sample timetable. Providing a list of teacher names, matched to photos and room numbers. The student taking digital photos of key areas such as dining hall, toilets, form room etc and key people form teacher, key worker etc.
If pupil is aware of diagnosis consult them about their needs and wishes for peer awareness.
Consult the pupil about any worries or concerns they may have regarding moving on.
Consult parents and plan for and practise travel arrangements e.g. walking, bus, taxi.
Provide a list of extra curricular activities including access to homework club.

Transition from Primary to Secondary

A checklist for students currently in Year 6

Receiving Secondary School

To be completed in consultation with current  primary school	Who responsible?	By when?	ü
As soon as secondary school is known liaise with Primary SENCo to list key dates for visits/ meetings etc.
Arrange extra visits to receiving school which have a specific purpose which is clear to the student and what they need e.g. visits may take place at different times of the day, favourite subjects/ registration/ lunch/ breaks/ different days. Give consideration to who the child visits with e.g. TA, parent, friend from the primary setting. Be aware: starting visits too early can cause anxiety to some students.
Identify key adults/ workers in the receiving school and arrange for the student to meet these adults when they visit.
Give student details of the school e.g. plan of the school site, sample timetable.
Provide a list of teacher names, matched to photos and room numbers.
Relevant staff from receiving school to visit present school.
Detailed information relating to individual child’s strengths and difficulties for the receiving school. Agreement on how information can be shared with all staff who come into contact with the student.
As part of personal passport take digital photos of key areas such as dining hall, toilets, form room etc and key people such as form teacher, key worker etc. which they can keep and refer to over the Summer holiday.
Consult the pupil about their needs and wishes for peer awareness.
Consult the pupil about any worries or concerns they may have.
Consult parents and plan for and practise travel arrangements e.g. walking, bus, taxi.
Provide a list of extra curricular activities including access to homework club.
Extra adult support on a temporary basis to cover lunch and break times.
‘Bolt hole’ (quiet area) identified for use as appropriate.
Identify staff training needs
Meet with parents before the transfer to secondary in the Summer Term to discuss all the above points and clarify the timetable for transition.
Meet with parents and key staff in Autumn Term of Year 7 to discuss how the move has taken place.  Establish close liaison and clear methods of communication between home and school.

(Author unknown)