Toilet Training with Confidence

Nappy to Happy

Circumstances bring you to places that you never would have dreamt of being in. Having something unexpected throws you out of sync but having support and a forward plan can bring you back on track.

Recently I was invited to join staff at my son’s school on their inset day. I was asked to speak about how I successfully managed to potty train my son and the challenges that I faced. I jumped at the chance without thinking. If you had asked me a year ago to speak out in public, I would have shied away from the thought.

A parent’s perspective, preparation and Social Taboo were just some of the topics that I discussed. By sharing my experience, also highlighting both teacher and parent being on the same page would be beneficial for the child to succeed. Hopefully by sharing some of my experiences with you all, you can go from Nappy to Happy with confidence. I plucked up the courage to talk about this to over 100 staff members. I am only glad that the topic was about Crap, so this did lighten the mood and my nerves slightly.

My personal early memories

My Grandparents were born in Gujarat India. My mum was born in Kenya and my father in Uganda. As refugees they arrived in the UK where I was born. Over the generations the styles of toilets, routines, language and communication used would have evolved and changed. e.g. my Grandparents generation would have early morning strolls to secluded fields with a bowl of water. My parents used outdoor toilets where they would have to squat and have a bucket of water to flush the toilet. In this modern day, we expect a standard sitting and flushing toilet.

As a Hindu my Grandma would pray to her many idols. Our household was full of superstitions, customs, rituals and religious ceremonies. We were taught to eat food and do anything religious with our right hand and wipe our bottoms with our left hand. Going to the toilet was something not talked about openly. On the other hand, if someone farted or burped, this was quite satisfying to older members of our household. For myself and my brother, we would laugh or snigger or roll our eyes in embarrassment. Many cultures will not speak about such subjects openly. Being British I was brought up on toilet humour.

Did you know.

‘More people now have a mobiles telephone around the world that have access to a flushing toilet’.

Photo by Tim Mossholder on Pexels.com

Taboos

Many of us have had to overcome so many social Taboos such as toileting, adolescence, puberty, infertility and relationships in isolation. These are just some of the social indifferences we had to face. Growing up we relied on special support groups, magazines e.g. Jackie or Girl or speaking to female friends or family members. Even now in 2019, I am surrounded by families that will not talk openly in public about their child being disabled.

Understanding the Families

We all have different traditions, values, routines and names for when we need to go to the Toilet, depending on who we are taking to and language they are speaking in. e.g. Big Job, Crap, Toilet, wee, tinkle, poos, rest room, number one or number two etc.…
When training a child with social and communication difficulties both the parent/teacher needs to be consistent and use generic words
Our Journey

Motherhood came to me in the form of adoption. Overnight I became a mother to an 18-month-old son. I was not shown the nappy routines. We all missed a few crucial milestone moments. I had to learn on the job without a manual or family of friends close by.

I remember the first day, when he soiled his nappy, a very distinctive smell wafted across this room. OMG!! Reality set in. As I lifted him out of his cot, his nappy could not take the load and started to leak. My reaction was to run across with him at arm’s length, towards the toilet with a turned-up nose, a look of disappointment. Lots of negative sounds came out of my mouth. I guess this did not set a good precedent or give him a positive impression of me.

Lessons Learnt

• Remember to use a good quality nappy
• Not to make lots of negative sounds or gestures
• Be positive and upbeat.

We first started the process at the age of three – he just was not ready. After several failed attempts, luckily Gina Davies came to the rescue. Check out her great online clips for practical advice and tips, that gave me the confidence to start toilet training.
http://ginadavies.co.uk/parent-carers-shop/
https://vimeo.com/ondemand/toiletsletsflushsome

It seemed he preferred to be in his nappy as this was a place of comfort and was afraid to sit on the toilet. We would change him in his bedroom, in the lounge and the back of the car, therefore he did not understand the purpose or the true function of a toilet. Usually the Bathroom is the only place I could escape to and be on my own – even for just a few minutes. As you all know every child will be different depending on their understanding of the world around them and the use of language and communication.

Questions to ask yourself:

Communication

• Do they understand my instructions?
• Can they follow a visual timetable?
• Is he/she in a set routine?
• Does he use and understand Makaton?

We used “Backward chaining” techniques and broke down the routines

• Can he pull up and down his pants on own?
• Can he follow a washing hands routine?
• Can he wipe his bottom?

Preparation is key!

• Ask parents, siblings, peer groups to demonstrate
• Attention Autism toilet training activities
• Visual timetable, now and next board and rewards chart
• Props – robot on a toilet in the bathroom and mirroring the routine
• Role play to demonstrate and fake poo and a nappy on teddy
• Keep basket, changing mat in the bathroom
• Have a basket or container ready with nappies, wipes, change of clothes and spare cleaning cloth for spills, bin bags anti bac spray, extra sheets incase
• Social story books (see reference section)

How to motivate

• As a parent demonstrate how it is done ‘show and tell ‘, back this up and follow the visual timetable.
• When following instructions, be a matter of fact and sound boring.
• Celebrate and cheer when we achieved a milestone.
• Remove all clutter from bathrooms and replaced and prepared with all potty-training items.
• Buy new pants e.g. my son still colour coordinates his clothes, according to the different days of the week … Red on Monday, Orange on Tuesday etc. If your child likes a certain TV character or a superhero, this can be a great incentive to motivate the motion.
What are tell-tale signs

Many children do not have the sensation on knowing when to go, so this might prove to be more difficult.
Observe your child before the times they go to the toilet and what actions and facial expressions they use before and after. What foods make them go and what constipates them.
e.g. My son jumps around and is more active before number two.

• Do they go to a corner of room and have a ‘poo face’?
• Are they requesting that they want a nappy change and want to be cleaned straight away?
• He would go and get a nappy when he was ready, he would request that we change him and to be cleaned straight away.
• He was regular – He would not go at school and hold on the he got home

Number ones it took him just one a day

• I choose a hot day
• Put him in big boy pants
• If he had an accident – we would say ‘oopps’ or uh
• Take him to the toilet and increased water intake
• Took him every half an hour and tried out the standing up wee’s
• Used the timetable with a dead pan face
• Last drink of the day was 5:30
• Took him for last wee at 10:30

Number twos

• Took over a year as he insisted on doing number twos in his nappy.
• The thought of it panicked him so we decided to take it step by set and in subtle stages
• At each stage we made sure there were clear lines of communication between teacher and parent, carers and family members – we made sure we were on the same page and we were consistent.

Stages

Started in small steps, until he was ready to move on to the next. The whole process took about a year with teacher support, open line of communication and consistency.

Stage one
• We started to change his nappy on changing mat, outside the bathroom

Stage Two
• Changing him still on the mat on the bathroom floor with the door shut.
• After changing the him I would show empty the poop in the toilet to he can see where it is meant to go.
• At all times following the visual timetable at all times by pointing with dead pan face

Stage Three
• Sit on the toilet with nappy on
• Incentives to keep him there, increasing the time e.g. book or box of favorite toys and last resort tablet
• When he is done his poo take back to mat change him
• Ask him to empty poo in toilet, flush, wash hands, dry

Stage Four
• Eventually he did a poop in his nappy
• Liked to squat until recently
• We would encourage him to put his feet on a low stool floor.

Stage Five
• Once use to Sitting, prepare and cut a small square or round shaped hole into the nappy
• Continue to make the child empty contents in to bowl.
• Each time make the hole bigger, until the whole is big enough for the poop to go straight through.
• The Nappy got smaller and smaller until we just had a strip around his waist.
It was a eureka moment, I still remembered the day when he just stripped away the Velcro – He had finally understood. The nappy was like a security blanket for him. We cheered and celebrated with praise and rewards!
Present day

• Encourage “private time”
• Keep a watchful eye on him
• Remind him that he has missed out stages in the routine
• He takes far too much toilet roll or hand gel

What was once an embarrassing subject, I have gained confidence with the help and encouragement of amazing parents and teachers. Together we have reached another milestone.

References

Sanitation
https://www.nationalgeographic.com/magazine/2017/08/toilet-defecate-outdoors-stunting-sanitation/

Examples of Bollywood movies
https://www.imdb.com/title/tt5785170/ Toilet Film.
https://www.imdb.com/title/tt7218518/ Pad man Film
https://www.imdb.com/title/tt1010048/ Slumdog Millionaire
https://www.imdb.com/title/tt3741834/ Lion

Library of books

Radar Key

This key will help you access disabled toilets.

https://www.amazon.co.uk/s?k=radar+key&adgrpid=53952589435&hvadid=259011943893&hvdev=c&hvlocphy=9045885&hvnetw=g&hvpos=1t2&hvqmt=e&hvrand=4147983665656634112&hvtargid=kwd-296340890329&tag=googhydr-21&ref=pd_sl_4x28vhiqpg_e

Up in the Cloud!

Up in the Cloud!

 

The highlight of our long summer holiday was successfully managing traveling on an aeroplane as a family. After years of hoping, months of planning and a group effort we successfully accomplished the mission. 

 

In Section E of the Education Health Care Plan states: ‘What outcomes you are hoping to achieve, including your long-term hopes for his or her adult life’. Flying on a plane had been on our agenda for the last couple of years but found excuses to put it off – we once boarded a plane at an exhibition (https://www.brooklandsmuseum.com/) …. no sooner had he entered the aircraft, he cried and refused to board, whizzing back down the stairs as fast we could say ‘come here !! The thought of him doing this after spending all the time, effort and money put us off.

 

So back at the start of 2018, when he asked about ‘Going on an aeroplane’ we jumped at the chance and started to plan our trip.

 

We planned with the benefit of advice from friends who have tried and tested travelling with their ASD children. We decided on a location, which was not more than three hours flight. We also decided a self catering villa so we had the flexibility of making our food or eating in privacy in case of a loud meltdown. We booked our holiday to travel to Portugal, flights with https://www.jet2.com/en from Stansted and private villa http://www.quintadorosal.com/, transfers organised by very friendly resort staff.

 

Once I had booked the holiday I contacted the speech and language therapist at school. She kindly prepared a 13 page social story which was a tailor-made photo itinerary of the airport procedure including security and check-in areas, apartment room, aircraft transfer etc. and a countdown calendar.  

 

Topsy and Tim were also around to help.

https://www.amazon.co.uk/Topsy-Tim-Aeroplane-Jean-Adam

 

Others available: 

http://www.suziebooks.co.uk/aeroplane.htm

 

At Stansted Airport we made our way to the information desk where we were immediately given a pink wrist band for special assistance. All we had to do is show this at check-in and in the fast track aisle we by passed all the queue and security. Staff were helpful at all times. The only time we found it overwhelming was when the route through duty-free meandered around like an ikea shopping experience. This was very loud as well as heavily scented with the various fragrances for sale – not ideal with a highly sensory child. It would be ideal if we could by-pass the duty free section.https://www.stanstedairport.com/help/special-assistance/hidden-disabilities/

 

Faro Airport – Well what can I say .. all airports should aspire to this level of service. Thank you to My Way and 

https://www.ana.pt/en/fao/services-shopping/essential-services/reduced-mobility for exceptional level of service from start to finish which made for a smooth transition.

 

Jet2 was a generally comfortable flight yet with all the passengers around and a slight delay in take-off, my son got fed up and he kept shouting ‘Up In the clouds’ and trying to get out of his seat-belt – luckily the tablets and phones were fully charged before we departed.

 

The boy did well and we are so proud of all the transitions, but without all the ground work, help and planning all of this would not have been possible.  

 

Thank you to all involved! 

 

Great team effort.

Knowledge is Power

Advice ,Support and Paperwork

We had an idea that our son showed the traits but nothing can prepare you for the road ahead. From the moment you find out your child has a special need, often help is not at hand. The paediatric team give a clinical diagnosis, they may recommend a treatment or a plan. They are not in a position to offer practical help and support. You are left on a lonely journey ahead. You leave the room numb, not too sure of what to make of the conversation your just had. You arrive home and after you have broken the silence and managed to get your head around the discussion, the first point of call is the internet. The word ‘Autism’ is typed into the search engine. Little do you know that Google will become your new best friend.

Autism is a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and restricted and repetitive behaviour.
You soon realise that Autism is a spectrum and no one child is the same. We reached out to our local National Autism Group at the time. We were lucky enough to attend a SCATT (Social Communication Assessment Team) course. They are an excellent source of information for those new to autism or for those requiring a little more in-depth knowledge.
The course runs for 7 weeks and will cover the following topics:
• Introduction
• Understanding Autism
• Understanding Communication
• Understanding Sensory Issues
• Understanding Behaviour
• Autism & The Family
• Parenting Tips
Other worthwhile courses which are available via your local authority or charities are the Earlybird, Earlybird plus, and; http://www.autism.org.uk/earlybird

If your child is between 7-18 our school is very supportive and facilitated the Cygnet course. This covers talks about other topics including adolescence and siblings;

http://www.barnardos.org.uk/cygnet/yk_cygnet-parents_carers_support_programme.htm
The first point of call might be your health visitor, doctor, school. 

All local authorities have an information page for all children and young people up to 25 years old who have special educational needs (SEN). Search for the ‘Local offer’ This champions education, health, days out & social care services . It gathers all the essential information you need under one roof.

This is the City of London local offer:

http://fyi.cityoflondon.gov.uk/kb5/cityoflondon/fyi/localoffer.page?familychannel=7
Being a carer can be a lonely and isolating place. You are thrown into the deep end and you try to find a way to cope. Supporting your child along with like minded people, sharing ideas and empowering each other. No one tells you about the bureaucracy involved and lack of social life you are about to embark on. You soon become your own child’s advocate. The words Tribunal and Code of Practice become all too familiar. If form filling is not your forte – it will be soon! You have to be super-organised as the one consultant’s letter turns into 2-3 A4 leaver arch binders. You reach out to other parents in the same boat who can sign post you to the right direction or to the next stage of your journey. It is a constant battle to prove that your child has needs in health, education and short break settings. At the same time making sure that they have been met according to the code of practice.
This is an on going struggle to make sure services are in place but it is refreshing when you get the support and are listened too. Help is not always out there, so sometimes you have to be creative with your ideas. Often I hear parents gasping ‘ Oh no, not a other form’! The journey is exhausting but we battle ahead for our children.

If English is not your first language, you don’t have use of the Internet or you are not one for fighting your own corner, then who do you turn to? There is help out there but would be great if you knew where and how to access it.
For the last few years the Education and Health Care Plan (EHCP) has been on radar.

I attended a course last summer at http://www.sossen.org.uk/index.php to find out more. Sossen are great advocates for parents looking for advice and education on Sen. They also have walking centres for when things are not going to plan.
My son’s school organised a multi disciplinary team and formed a workshop for parents who were transitioning from the statement to an EHCP. This was made up of Local Authority advocates, speech and Language therapist and parent partnership and school admin team. They explained the long 20 week process in layman terms, this came in form of a visual timetable and chats with individual professionals. It is here I also met my representative from https://www.kids.org.uk. Kids is a national charity supporting disabled children, young people and their families. They run and provide services in development and learning, play and social care and independent support services . Gina Silverman was assigned to us, she was a lifeline and provided great support throughout the process. Attending meetings with the local authorities and school and made sure everyone was not the same page. Guiding us through the many loop holes and acted as a facilitator. Making all involved come to a mutual agreement.

Find out more here:

https://www.kids.org.uk/independent-support1 

This was a great example of how the transition should be. Everyone working and putting the child’s interest at heart. Thank you Kids, my caseworker and all involved for your guidance and support. Working together to create a happier secure environment for all and creating long term opportunities, creating goals and outcomes for the children.

The Holidays

On a recent long awaited and welcomed visit from our friends PJ and Anne. We caught up on lost time and a coffee. They spoke about their travels across America in their camper van and places they had visited.

After leaving school I joined the travel industry. I feel fortunate to have travelled to so many countries. Now reading books, watching travel programs like Anthony Bourdain and Joanna Lumley and listening to the radio are the closest I can get to escape.

For most parents the word ‘holidays’, especially the long six week one, raises the blood pressure. My son works well with structure, routine and a busy time table at school. The minute you take this away, anxiety and mischief sets in. He bounces around and becomes disregulated. He likes to know what he will be doing that day and finds a holiday countdown calendar very useful.

Imagine your child refuses to leave the house, this can be quite isolating for all involved. You’re lucky if there is a specialist holiday play scheme for your child with experienced staff. These amazing organisations create memories and independence for your child away from home and school. Children are given time to explore and are introduced to try new things, building confidence and reducing anxieties . Forming bonds and often friendships. A safe haven with experienced staff is a godsend to families, giving us a well deserved respite. Look at the “local offer” on your local authority website to find out more about short breaks and their FYI page should direct to to what’s available in your area. We have used the amazing http://www.interaktive.org.uk/ which created wonderful memories for my son and support for families . We will be trying out http://www.rolemodels.me/ this summer as it is closer to home.

If you have the confidence and energy, you may decide to start looking for a destination further afield. Locating an autism friendly place is not easy. Finding a gem of a place which is a safe haven is a blessing and are few and far between. A lot of risk management goes into planning for such an event. Accomodation that will tick the boxes for your child’s needs ( not often yours) . It’s not all about sunglasses and sunscreen!

• Will it suit other siblings, carers or family
• Will it be inclusive
• Do I want it to be autistic specific?
• Remote or a quite room so not to disturb he neighbours.
• Not too crowded
• Have something the whole family can enjoy
• Is their a sensory room or a quiet space
• How many favourite toys will I have to pack before we set off or
• I hope there will be enough to distract him

So many more questions can be added to this list.

A great example of a great find is the http://www.thethomascentre.co.uk/

Currently The U.K. Is our preferred destination for my son as we can always come back home if it all goes horribly wrong. He is not quite up for flying yet. But we are hoping to visit to do a http://tryb4ufly.co.uk/ in the future.

This year on Anne’s recommendation we visited her good friends self catering cottages in Warwickshire. Helen and Steve were on hand to answer as many questions as possible before we set off. We were greeted with great smiles and comfortable accomodation. Helen has great experience with special need and combined with her kindness and ability to sing, our son was able to join in with a singalong ‘We wish you a merry Christmas’. We will definitely return and would love to recommend this value for money bolt hole.

Read more below:

Garden Cottage, https://www.airbnb.co.uk/rooms/17489738

Grooms Cottage,https://www.airbnb.co.uk/rooms/17487822

In addition to offering people a place to stay, we know that some people would like a bit of extra attention. I used to work in a community project in London, and also did some singing with people of various ages and abilities, in all sorts of community settings.

Through this work, I met a lot of people who, whilst wanting to go away for a break, couldn’t always find suitable places to go. That’s when Steve and I started thinking about finding a place where people could come on holiday with their families or their carers, safe in the knowledge that they could have the kind of holiday they want. We are happy to leave you completely alone, if that’s what you would prefer, but if you want some extra support, we are around to help, if needed.

What I learned from my years running the Cedar Centre, teaching English and working with people of various ages, cultures and backgrounds is that almost everyone responds to music in some way, be it singing, playing an instrument or listening. Some people call what I do music therapy, but I prefer to call it people having fun – because that’s what I aim for. I play the guitar and ukulele, and sing, but I also use Youtube and other online resources to encourage people to enjoy the music they love.

We have converted an annex in the grounds of Hillside House, so that we can invite people to come and watch films or television on a big screen, or sit and watch the birds and other wildlife in the garden. It’s also a place where people can sing, do creative work, or just sit and talk.

For those who like to go out, there are lots of places to visit, nearby, including Warwick, Kenilworth, Leamington Spa and Stratford-upon-Avon. For those who like to stay local, there are walks around the village and some spectacular scenery. There are canals, and companies offering narrowboat hire, plus pretty villages and National Trust properties close by.

For more information please get in touch.

Helen Menezes

hlnmnzs@gmail.com Tel: 01327 261222. Mob: 07719 807915

 

 

 

Following the obsession

Many of us have hobbies and interests. Some might call it an addiction, often turning from self motivated compulsions. Gathering items, information and data. Joining special interest clubs, social groups and forming camaraderie. 

Your passion to follow your childhood football team. Weekly trips to the local pub whilst discussing the latest score and disrespecting your friend and opposing team. Venting their frustrations, screaming and chanting songs. Discussing in detail a penalty kick, whilst the non interested person accompanying them, stares back with glazed eyes- wishing they were doing something less boring instead!

Many of my friends have become golf or cycling widows. Their partners have found a great way to escape on days, weekends or even weeks. A great and healthy way to exercise their body and clear their mind.

 For some it might be a fishing trip weekend of solitude and a bag of worms, returning with tales of ‘fly fishing by J.R Hartley’ , how many wild salmon they caught, what bait they used. Gleaming in excitement and devotion, to which you have no enthusiasm. You just nod, grit your teeth and smile back, hoping to move on to the next subject.

With a child with Autism these fixations are tenfold. The word compulsive and repetitive springs to mind. These obsessions are not shared and they retreat into their own world. They are self absorbed and often “low functioning”. Fellow children do not share their interests. A “high functioning” child can bore you into a comatose state, often repeating their views and analysis on a particular subject.  

Our son is a logical and visual learner who uses sound and music to help him learn and make sense of the world around him. Numbers, shapes, letters are his favourites. As he grows we have used this to our advantage. He learns words through songs, TV and books. With his love of days of the week, he colour coordinates his wardrobe and has devised his own uniform. On Monday is red, Tuesday is orange, Wednesday is yellow etc. 

Order and routine is paramount to his day. As he grows we extend his interests by showing new things and taking him out of his comfort zone. We have had to adapt the way we teach him and find a way to make him understand and dive into his world. With his first love – ‘In the night Garden’ we have used the figurines to role play, teach him maths and English. 

 Most parents with a new diagnosis, can tell you that initially they can not see the wood through the trees. When our son diagnosis was confirmed, we typed in the word ‘Autism’ via a google search We were very fortunate to come across http://ginadavies.co.uk. A Speech and Language therapist has given families like us great support and practical advice e.g. Toilet training, behavior, food and sleep. Specialist schools use the ‘Attention Autism’ approach. The Children are engaged, ready to learn and the teachers are enthused by the teqnique. I remembered the first time we met with Gina. She got down onto Anuj’s level and immediately found a way to make him chuckle and smile. ‘Feed the brain’ she said enthusiastically. Gina introduced us to ‘Intensive Interaction’ This therapy shows how to communicate, develop eye contact, enjoying each other’s company and shared interests. These are just a snippet of what this therapy can offer.

Those of you who have met him know he is an active boy who bounces around in excitement or runs like a rabbit in headlights when his sensory world is overloaded. By doing certain activities he is able to use up his energy, be calm and self regulate. He is now able to request what he enjoys. The boats next to the Boathouse Café at Regents Park. Paddling for half and hour https://www.royalparks.org.uk/parks/theregents-park/food-and-drink/the-boathouse-cafe/

Swimming in the Barbican http://www.goldenlanessportandfitness.com/activities/pool-and-swimming-lessons/

Music Therapy at the http://www.hmdt.org.uk/saturdayprog/music-treehouse/ 

At eight years old, his speech is developing at a very slow, but steady pace and has helped him be aware of the world around him. Having a firm, yet fair stance and not going back on our word, we introduced time tables, routine and the house rules. We have come up with strategies and try to stick with them as parents by working together. We have hidden his favorite toys in the past, just so he will move on and divert him to another subject. Makaton signing, visual pictures and drawings with written words reinforce his understanding and helped him with his reading. He has been known to make attachments to schedules. Often taking his favorite holiday play scheme timetables to bed and placing them on his pillow. Reflecting on his special memories. Timetables have helped make sense of his world and by sharing with us his likes and dislikes. We found the more time he spent on his iPad or TV, his behavior got worse. We have managed to produce a rewards system, which is supported with a visual ‘Computer on Friday’ after school along with a home made popcorn ( Popcorn Friday’s).

 Moving to the City of London has extended and opened his world, he is less fixated and more flexible. I guess he is feeling more secure and he is understanding more. As long as he knows he is going home. When we lived in the countryside his obsession was traffic lights so sticking to the same route and towns. Guildford and Leatherhead were his choice haunts. We would often arrive at a new destination all excited, wanting to expose him to new and wonderful things. He would resist leaving the car, resulting in us picking our battles and retuning home in a somber and deflated mood. Out past times were very monotonous and tedious. Quite happy to not leave the house and live as a hermit. The film Groundhog Day springs to mind.

I guess you can say we are blessed with so many traffic lights in London! By follow his obsession we are able to explore, discover, divert and distract him further afield. Learning new words as we go along. We have changed his pace, revved up the gear and are able to change his direction, turn another route to help him grow and hopefully to flourish. By taking him out of his comfort zone to see how he reacts and introducing him to new things in small manageable chunks.   

It has not all been plain sailing. Anxiety, meltdowns and tantrums. This downward spiral of mood swings and associated body changes. Sometimes feels like you are a hostage in your own home resulting in a depressive state for those involved. With the support of the amazing parents, teachers, staff at his school and online groups  we are slowly reaching a calmer state.

Overnight we grow angel wings and bull horns to protect our children from harm. We are absorbed by them and will go to great lengths to do the best by them. Their diagnosis becomes our obsession and Life!

Days out

Bowling in Bloomsbury
We often have declined invitations to parties and functions. Venues are not suited or adapted to suit individuals on the autistic spectrum as the noise levels are just to high and there tends to be too much movement. The chit chat of voices coming from different directions tends to confuse and cause sensory overload, often leading to meltdowns. Lack of spatial awareness causes our son to run around and use the space provided. The constant running back and forth excites him and he turns wobbly and has unstoppable fits of laughter. Being social does not equate in his mind. So a big fat Indian wedding function or birthday would be out of the question.

Recently, we were invited to Bloomsbury Bowling in Holborn with his peer group. It was really nice to be included. We accepted and would join them for a short while, especially as it is a stones throw away from our new home. It was our first time at this venue and did not know what to expect. I managed to convince an apprehensive dad who always gets nervous at the site of a crowd with our son. “If it does not work out we can always leave – what could possibly go wrong?”, I said . We arrived and made our way down the wrought iron steps. We heard the pumping sound of the bass, like Fabric (the newly resurrected night club) even before we opened the door. Should we just leave while we can? We found our party members and proceeded to greet them . Catching up, staying close and talking very loudly.

From the corner of my eye, our little man decided to bolt down the bowling alley lane. He was trying to follow the ball and seeing where the skittles were going . Giggling and looking back at us as he did this. Too embarrassed and stunned we froze for a second, pretending he was not ours and hoping someone else would run down the aisle. My brave husband sheepishly ran after him and marched him back up. Other by- standers also freezing their game in time, staring back. Bickering beneath our baited breath we continued to blame each other for not holding his hand. Your son, no your son. Oblivious to the dangers and consequences, he was redirected by a very kind member of the family towards the bowling rack. He really enjoyed the experience. It was very loud but, we were glad his ear defenders were at hand. Though it was an eventful and very short visit, I guess taking part is the main thing. We hope in the future we will return and we have a few lucky strike.

Earlybird at the Science Museum

The Science museum are one step ahead of the game. They open their doors early too provide a quiet time for children with Autism. We try to take opportunities like these as there is a mutual understanding between parents and children alike and we avoid the crowds. The district line to High street Kensington is a perfect way to travel.

Preparing your child beforehand with a social story usually helps. No matter how many times you might explain what you are doing in speech, a picture, photo, word or a visual prompt reinforces what will be happening. Visual support helps to reduce anxiety and helps the child understand what will be happening now and next. A simple line drawing using matchstick men with words e.g. Home, walk, underground train, walk, science museum, walk , cafe, bus, home will suffice.

We enter the Science museum with no queues. We follow the visual story provided online and make our way up and around. Our sons speech is very limited but he shouts out “rocket” and “airplane” in excitement. We point out a classic dialup telephone, a Sony Pro Walkman cassette player and typewriter. Items like these do not relate to a modern day child who recognise iPads and iPhones. The museum provides an opportunity to feed his brain with visual objects. This is an opportunity to enhance their hobbies and make sense of their world around them in safe and comfortable surroundings.

We have booked our next Earlybird visit and look forward to visiting Wonderlab, the Museum’s newest interactive gallery and exhibits. We hope that more that more venues will learn from this and open their doors to people with Autism and disabilities alike.

http://www.sciencemuseum.org.uk/visitmuseum/Plan_your_visit/events/other/early_birds_event

Not just a walk in the park

Mini city break

Holidays are few and far between for families who live with special needs. Our son has autism so hibernating at home and a low key Christmas is an ideal option. With all that can happen, go awry or equally not happen at all, sometimes it’s just easier to stay put. Christmas 2015 we felt that out son was turning a page with his understanding of the world so we decided to test the waters with a mini break to London.

My husband and I love the capital. We both lived and worked there before we were married and only moved to Surrey after the diagnosis. A visit to London, a mini break would be a chance for us to visit old stomping ground and see how the old girl was doing. We took advantage of avoiding the trauma of air travel. Should things go really wrong and you have to travel back home, there’s no great loss.

Blackfriars, Premier Inn and St Paul’s Cathedral 

The Premier Inn Hotel in Blackfriars was our chosen destination. A budget family room, clean, tidy and the colour purple. Friends in the autism world, recommended and tend to use this brand as the rooms are calming and the interiors are consistent with all branches nationwide.

We visited St.Pauls Cathedral for one of the Christmas recitals. We wanted to hear the choir, the acoustics and take in the atmosphere, well for all of the five minutes. His attention span is short lived so we always devise a strategy. We find a seat away from all by standers with a quick exit plan, should he decide to out sing the choir with his very loud non verbal noise. We are prepared with his snacks, which come out from our secret hiding place at the bottom of his back pack or in one of our pockets in case he eats all his other snacks up before. Only once we are settled and sat down – we present him with a treat .We know that once the provisions are eaten he will be off. This is our delay strategy. On the way out he pulls us towards the candles, which are lit by the congregation and he shouts out ‘Happy Birthday’! His lips pouted ready to blow them out! Luckily my quick action super hero mum reflexes managed to pull him back and out of this amazing historic building. In his wonderful innocent mind – candles mean birthdays. We have since discovered there is a cafe in the crypt.