A-Z Of Autism - E Is For.....

So if you read D is for then you will know what all of this is about, if not here is a little recap. I'm a Mum of 3 autistic children and way back 13 years ago when my eldest was diagnosed I really struggled to find real-life info about autism. So here we have the A to Z of autism, I'm not a Doctor or health care professionals, these are just some words on what autism means for us. Each fortnight (life stress dependant!!) is the next letter of the alphabet, do head over and check out D (highlighted above) and let's get on with E!

Educate
This is my MAIN E I think and I do it at any given chance! Autism is still massively misunderstood. The perception that certain behaviours are forced or purposeful, that they can be faked etc etc
It makes me rage, why on earth anyone who knows a person on the spectrum knows it's absolute crap. For me I have found the more ignorant people are the older generation, I get it, in their day there was no autism or ADHD, they were just naughty kids, or classed as slow and forgotten about. I take any given opportunity to tell them how it is, my best response is come and live with my 3 and tell me it's fake!! One of the reasons I choose to blog is to educate others, even if no one reads it's like therapy. But if 1 person reads and learns 1 thing then that's them educated. So my advice is to educate, share your wins and share your losses, they all count.

Education 
People think being on the spectrum equals not being able to be educated, this is not the case, although it can be difficult to find the correct setting for your child. I have 3 on the spectrum and all 3 have very different educational needs. I have 1 in a full specialist provision and 2 in mainstream education, with an EHCP. There are some kiddos on the spectrum who attend mainstream with no support and they cope well, but as I said it's very child-specific. My best advice when it comes to education is to do what you think is best for your child. When it came to Pops I knew mainstream even with full support was a no go, so I took the time to find out all about the specialist provisions in my area and made it my aim to get her into what I thought was the best one. Visit all of them, even ones that you don't think you would consider as the visits can be very eye-opening. I visited one I was adamant I would love and it felt all wrong as soon as I walked in and I knew it wasn't for her.

EHCP
An Education, Health and Care Plan (EHCP), is a legal document that is drawn up between the local education authority, health & social care and a child's family, or a young person between 16 and 25. The EHCP identifies a child or young person’s needs and sets out the additional support required to meet those needs. They will provide clear structured support for any difficulties a child has, and identify what a school must put in place to help them, along with the outcomes necessary to achieve it. There will also be a clear timeframe drawn up, during which the outcomes should be achieved, and when they will be next reviewed. This is usually annually, it’s legally binding which means the local authority must fund any extra help identified as necessary. The process length varies depending on your local authority, your school SENDCO will start the process for you. If your child isn't in education you can apply yourself. You will need to fill in several forms and your child will see several professionals. We saw a speech & language therapist, educational psychologist, occupational therapist and we had a general check of their health. It's not always a straightforward process, check out my post EHCP Battle Finally Won for more info.

Echolalia
This is the repetition or echoing of words or sounds that you hear someone else say. Children often learn to speak by repeating words that they hear. Echolalia is commonly seen in toddlers during the first 3 years. It can happen in children with autism spectrum disorders like Asperger’s syndrome. They may need extra time to process the world around them and what people say to them. This causes them to copy or repeat the sounds or words they hear. There are 2 types of echolalia immediate and delayed, our Pops has a combination of both, she frequently repeats what you say, this is so she can process a request or understand what has been said. She also constantly repeats quotes from tv shows, songs adverts etc. She also does this to calm herself down when she is stressed.

Emotions
We struggle massively with emotions, people on the spectrum often find it hard to recognise emotions, facial expressions and other emotional cues like tone of voice and body language. They also struggle to show and manage their own emotions, understand and respond to other people's emotions, they might lack, or seem to lack, empathy with others. It is a huge myth that people on the spectrum have no emotions at all, we seem to have buckets of it, but we are still learning how to control and understand them.

Evidence
This is more pre-diagnosis advice, but it's all evidence. If you suspect your child is on the spectrum start complaining your evidence. I have a file for each of my children and it has all their doctors letters in for all their appointments. Mr L's is rather hefty now after 15 years of building, but you never know when you're going to need one of those letters!! 
If you notice your child doing that you deem unusual write it down somewhere as I guarantee when you go to that first appointment and they say "what's the problem" your mind goes totally blank! Even if you don't think it relevant write it down. 

So that's my Es for this time, I am hoping to have the next letter up in 2 weeks! But in this house, you just never know, but stick with me OK. If you want to catch up on previous weeks check out the A-Z of Autism page which contains links to all previous letters.

Thanks For Reading

Mandy

xx

Trade To Aid Reusable Sanitary Pads - Giveaway

Recently Trade to aid contacted me about their reusable sanitary wear, something that I don't currently use, but have read a lot about and debated trying. Trade to aid is on a mission to alleviate period poverty! Period poverty is a global issue where financial constraints prevent girls and women of any age from accessing sanitary products for their periods. Without access to sanitary products, girls and women are forced to improvise or not use any sanitary products at all. Rags, toilet roll, paper towels or torn clothes could all be used as substitutes and may be used for longer than is healthy. Menstrual stigma and lack of education create a cruel self-perpetuating cycle that prevents women and girls from seeking help. For every pack of pads, you buy from Trade to aid they provide women and girls in refugee camps with sanitary products to support them on their periods. They also support menstrual educational programmes for young people in West Africa.

Trade To Aid reusable period pads are comfortable, secure and save you money. They are made of recycled, reusable materials and the pads are simple to wash and easy to reuse. Reusable pads reduce waste, keep plastic out of landfills and away from the oceans. They are an easy way to make a small change to the planet. The main thing that puts some people off reusable pads is the cleaning afterwards, but washing the pads is quick and easy. You can wash them by hand with soap and water, or pop them in the washing machine, and then hang them to dry. Each pad is made from super soft bamboo charcoal that is extra absorbent so you don't need to worry about leaks. They are so super colourful with a bright geometric pattern on each pad. Each pack of Trade To Aid reusable pads contains 6 pads, 2 light flow, 2 medium flow and 2 heavy flow, so one box can set you up for your entire period from start to finish. You also get a handy bag to store your used pads in on the go. The cost is just £29.99, the average woman in the UK spends around £13 a month minimum on sanitary products. That works out to over £1,500 over a 10-year period. So in less than 3 months, these pads will have paid for themselves.

The team over at Trade to aid have generously given me another set of these reusable pads to give away to one of my readers. For your chance to win just enter via the widget below. The more options you enter the more chance you have to win. 

a Rafflecopter giveaway

Terms And Conditions
1. Open to Uk and Ireland entrants aged over 18
2. One winner will be chosen via the widget and announced on the widget
3. Winner will be contacted via email and has 28 days to respond to winning email before a new winner is selected
4. Your details won't be passed to any third parties
5. Entries made using software or bulk entries will be disqualified
6. By entering you agree to your name being shared on social media as the winner
7. Giveaway open until midnight 14th November 2021

Silcock's Winter Wonderland Is Back!

 

IT''S BACK! THE AWARD-WINNING, ORIGINAL AND THE BEST!

The UK's Largest indoor Christmas theme park returns to Manchester for Christmas 2021! 

SILCOCK'S WINTERWONDERLAND

Kingpin Events, organisers of the UK’s largest indoor Christmas theme park, are delighted to announce that Silcock’s Winter Wonderland Manchester returns after a 4-year gap, bringing the magic of Christmas back to Manchester.

The much-loved festive extravaganza returns indoors at EventCity next to the Intu Trafford Centre from Saturday 4th December 2021 to Sunday 2nd January 2022.

The Christmas event became a top attraction in Manchester for five years from 2013-2017, becoming one of the city’s biggest annual events and now the much-loved attraction returns bigger and better than before with tickets now on sale for the unmissable festive family adventure.

Kingpin Events will transform the indoor 22,000 sq m exhibition space into an unbelievable and magical winter wonderland, featuring over 50 family rides and attractions all under one roof including Dodgems, Roller Coasters, Waltzers and too many children’s rides to mention. There is also a dazzling array of theatrical shows on the main stage including TV stars Daisy and Ollie, Ice Princess Show, Christmas Meltdown plus the spectacular Christmas Circus returns, all with daily performances. Not to mention being greeted by Elves and Fairies and the amazing surprises that are still to be announced!

Of course, Christmas would not be complete without visiting Father Christmas - complete with real reindeers- who will be taking time out of his busy schedule for meet and greets every day, up to and including Christmas Eve. You also have the option to purchase a toy and a photo from Father Christmas Toy Workshop.

If this wasn’t enough there are also games stalls and festive foods from German sausages to waffles and crepes, as well as an authentic German Bar for alcoholic drinks and refreshments.

Four hours of non-stop fun and entertainment all included in one amazing ticket price (excluding games and food stalls) along with 3000 free car park spaces.


I've teamed up with Winterwonderland Manchester to give one of you the chance to win a family ticket to their special VIP event on Monday 6th December! For your chance to win this ticket enter via the widget below, all entries are optional, but the more you complete the more chances you have to win.


a Rafflecopter giveaway

Terms And Conditions
1. Open to Uk and Ireland entrants aged over 18
2. One winner will be chosen via the widget and announced on the widget
3. Winner will be contacted via email and has 28 days to respond to winning email before a new winner is selected
4. Your details won't be passed to any third parties
5. Entries made using software or bulk entries will be disqualified
6. By entering you agree to your name being shared on social media as the winner
7. Giveaway open until midnight 13th November 2021

Life With A Stoma When You're 13

***WARNING*** This post contains pictures of an actual stoma and scarring, do not look if you are squeamish.

We did a lot of groundwork with Pops to prepare her for life with a stoma, we used lots of pictures and lots of explaining to her what would happen at each step of the way. We obviously had no idea how she would actually take it when it happened. You can explain all you want to someone with Autism that a piece of their bowel will be stitched to their stomach, but until it's actually there you have no idea how they will react. It's been about 10 weeks since her 2nd surgery and we have both settled into life with a stoma and all it comes with. You can read all about her actual surgery in the blog post Not Where I Thought We'd Be and why her recovery has taken so long.

It's been a battle to find the right products for Pops to use with her stoma, ordinarily, you will use a flat bag that sticks on, but her stoma is flat on one side due to scarring so we are using a  different system, that's not been plain sailing though. Her scarring has progressed and naturally healing but at a very slow pace. Unfortunately due to her corrective surgery, she has scarring on either side of the stoma which has made life difficult for her. The best conditions for healing is clean and dry, keeping a stoma clean and dry is impossible, due largely down to the fact that poo comes out the end of it!!

It's taken the whole of the 10-week recovery for the scar to heal and only last week the final 2 stitches finally came out, I am hopeful that her stoma will pop out a little more now the stitches are gone and we can move away from the rigid bags, Pops doesn't find them as comfortable to wear as the flat bags. I can't believe how well she has coped with having a stoma so far, she amazes me every day. To begin with, she wasn't happy with me changing the bag, the bag only needs changing every few days and in between this time you empty it. Pops is really getting to grips with the care of her colostomy bag and I am sure in the future she will be doing all the care herself. She is already able to remove her bag herself and knows how to clean her stoma, we've got a bit of work to do before she can apply a new bag herself.

We have settled on a bag type and size and these are her last 2 boxes of bags that we have to cut ourselves. Her stoma seems to have settled at 34mm, so I sat and pre-cut all of the bags it makes changes so much easier and quicker. Her new delivery has arrived and it's got pre-cut bags in, so its bye bye scissors, which excites me. I do all of her bag care at the moment, but now she is all healed we are going to start showing other family members how to care for her stoma, so everyone can help her with it. Emptying the bag is really simple you just unroll the bottom of the bag whilst sitting on the toilet, it's not the nicest job and believe me when I tell you stoma poo absolutely reeks, you do get used to it, I am an expert at not breathing through my nose now!! Thankfully Pops seems to be nose blind to the smell and disregards it completely. When it comes to changing the bag it's definitely easier to have her lay down on the bed to do it. You have to position the bag right over her stoma and create a good seal to prevent it from leaking, we have had lots of leaks in the early days, it was a learning curve for both of us, but together we have got better and we haven't had a leaking bag for at least 3 weeks now, so I think we have cracked it. I think the fact her scar is all healed helps massively.


I can't explain the difference having a stoma has made to Pops life, she was so restricted before wearing nappies. It affected every part of her life from what she could to what she could wear. Before she lived in leggings and tunic style tops that hide her nappy, she's never been able to wear shorts and a t-shirt in the summer as she wasn't comfortable, she couldn't go swimming as you cant get swim nappies for a child who wears size 14 clothing. She couldn't do aqua therapy at school for the same reason, she couldn't go in our neighbour hot tub with her siblings and most importantly she couldn't go to the toilet for a wee! She's been bladder continent for years, but the council only allow you 4 nappies per day on the scheme, so she wasn't able to remove the nappy every time she went to the toilet. I think of all the things she is enjoying going to the toilet is the biggest change, I think for me too as trying to find an accessible toilet to change her in was always a nightmare, so we tended not to go out in case she needed changing. We go away in October and this is going to be her 1st holiday with no nappies, her first holiday where she can go swimming, 1st holiday where she can wear clothes that other 13-year-olds wear and she is soo excited.

We were worried about how life would be for her with a stoma, even the doctors didn't want to do a stoma at first due to her age. But, honestly, it's been life-changing for her in all the right ways, she can do so much more and she is so happy. It was a tricky, worrying road not helped by the cock-up in her first operation, but through it, all she's been an absolute trooper as always. She amazes us every day with her resilience, she is honestly amazing!

Thanks For Reading

Mandy

xx

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