A friend of mine interviewed me, you can read it here: Autism: A Spectrum of Perceptions. Julie’s View.
I keep stumbling across posts all over social media from parents and carers asking about continence and toilet/potty training tips and ideas and finding myself repeating the same stuff on each one so it seemed a good time to put it in one place and do a blog. Eliza is 8 years old, diagnosed ASD age 3. Continence was always one thing she struggled with, she just didn’t show any signs of awareness or understanding it until last year and I’d tried various things over the years. During last winter, aged 7, something just clicked and I put a plan in place that I knew she’d both understand and love and it worked. I’ll post a link to the blog that covered that later on. It was a perfect situation for us as I got to use Eliza’s favourite time of year to give that nudge she needed, and that she seemed ready for. It worked and she’s been officially classed as continent for six months now. We’d attempted potty training when younger and every now and then we tried again and it had never worked but we found some interesting ways to approach it so I’ll share them below.
*** These are ideas that helped us. They won’t work for everyone but you might get idea’s and be able to tweak them to suit ***
Being near Christmas when Eliza decided the time was right to toilet train, I used her love of Christmas as a nudge. I created personal letters from Santa and Mrs Claus and arranged a ‘special delivery’ from the North Pole. The package included knickers, toilet seat, books, reward charts. She loved it and was so excited about it. (You can read about how we did it here Striving for continence ). The letter was an excuse to add extra praise and support, full of lovely words and pictures.
If there is a favourite character they really love (someone from a cartoon or kids TV, someone from a book etc) it would be easy to recreate this and tailor it to them and your child’s personal needs and situation. It doesn’t need to be a specific time of year, just go with it and if you think your child would like it then get creative. You could even use a family member if that would work and after someone read my blog about continence last year, they used the family pet as the letter writer!. You know your kids so you’ll know their likes and what they might find fun or exciting.
Favourite Dolly or Teddy
If there is a favourite doll or teddy then this could work for children that tend to be more visual learners. I’d done this with Eliza many years ago but she’d clearly not been ready at that time. Use dolls or teddies and sit them on the potty. Hide a syringe up your sleeve (weak squash can be a bit more convincing than water, depends on whether your child will notice detail) and show your child what happens when sitting on the potty. Teddy can do a wee if you secretly squeeze that syringe in behind it. Lots of praise for teddy etc. It’s worked for quite a few children as they gained confidence seeing the process. I know some of you are thinking ‘what about poop?’ and yes, you can do similar and make your own pretend poop to use if you need to (Soft dough, icing and smooth peanut butter are good options. Add food colouring or chocolate spread to change the colour and use an icing piping bag to squeeze it from). It’s a little trickier to do these things is using a toilet instead of a potty but it can be done. You might need to practice hiding things up your sleeve and working it out but yeah. it’s achievable. **realising how much of my life was taken up with toilet issues 😛 **
Friends and family will testify that my bathroom had instructions on the wall for quite some time about how to go to the toilet…… in start to finish order including washing and drying of hands…. YEP!! Eliza is easily distracted and her anxiety can often make her lose her train of thought so I made visual prompts. We also had a smaller version of these laminated and on a key-ring for when we were out and about. They can be as descriptive or basic as you need. Pictures and/or written prompts.
Books we found useful
Princess Polly’s Potty (also a boys version ‘Pirate Pete’)
Toilet Time: A Training Kit for Girls (Ready to Go!) (also do a boys version)
There are also apps you can download if your child prefers those to books. ‘Potty time with Elmo’ was popular and ‘Potty train baby Eva’.
Whoever is wanting to toilet or potty train, involve them as much as possible. Let them choose underwear, style/design of potty, pull-ups, toilet seats. They can help you create reward charts of their choice or decorate it themselves. Get as many books as you can and see which they enjoy and understand better. Let them go at their pace and don’t worry if it doesn’t work first time. From first attempt to becoming continent it took Eliza four years! FOUR YEARS of trying stuff, finding ways she understood, different books, apps on the iPad, much trial and error. Four long years of her constantly watching me go to the toilet (Yeah, no privacy when you have kids!!). Just don’t give up because it can just take longer for some to be ready.
For almost three years I was a sign instead of a spoken word. Eliza had regressed and lost speech, she could not say that word that so many mums take for granted, ‘Mummy’. It was hard sitting in play groups and hearing children calling for their parents whilst Eliza sat happily on her own in silence. There was no “Mummy, come look what I have painted” or “Mummy, come see”. We relied on Makaton sign language to communicate. I longed to hear her say the word but instead she tapped three fingers on the palm of her hand which is the sign for Mummy. I was so proud that she could sign but at the same time my heart ached to hear a voice. But she knew who I was, she knew I was Mummy and that in itself was wonderful.
When Eliza’s speech started to return one of the first words she said was ‘Mum’. I was cooking in the kitchen and she tugged at my top wanting something. I asked what she wanted and she pointed to a toy she could not reach, pointed to me again and said “Mum” before pointing back to the toy. I cried. I’d waited a few years to her speak and I felt overwhelmed and relieved. It gave me hope that other words were still to come. To me it was the most wanted word in the world and I finally heard it. Since that day I have been called a variety of mum related words – Mum, Mummy, MumMum (she even made me a label with this on from a label maker), Mummy-Pig, Mother (I know right!!!) and more often that I can count “Muuuum” which is usually followed by the following sentences –
“…….can I have…..”
“…..where is the…”
“…is dinner ready?”
“….tell him!” (Directed at small sibling who is usually causing ‘trouble’ 😉 )
I’m a picture visual on the daily board we have in the kitchen. I was a Makaton sign for a while. I’m a label that she made (that still sticks to my laptop). My name is shouted in both love and anger. My name is whinged and whined at when she doesn’t get her way. My name is mumbled through tears when she’s feeling unwell. On the odd occasion, my name is sworn at and lashed out at in frustration. Once she announced “Mother!” when her Wii U game didn’t load properly.
Whatever the name she uses and whatever the context or situation she puts it in, it’s who I am and I love it. I love her. And if you catch her relaxed and at the right moment and you ask her who I am, she will simply tell you that I am “Eliza’s mummy” with a huge grin.
I’ve been alive for 40 years now so it is safe to say I have met a fair few people over the years. It is interesting how the people we meet change our lives and sadly some not always for the better but we learn from the mistakes, the pain and the negativity and we move on. I come from a large yet scattered and disconnected family although I am lucky to have a few amazing members of the family who have been, and always will be, there no matter what. Some do their best to understand about Eliza and autism. I have a select few close friends that know everything about me and my life. I have quite a few what I call ‘passing friends’ that I may not see often, may not chat to often but they are friends. It’s just that lives are so busy and sometimes so very different that we don’t get the chance to be more than friends that simply pass each other here and there. Then there is this extra family that I have. A family I found over the last few years and it keeps growing. This family is also made up of wonderful people. Some I have never met and some I may never get to meet, a few I plan to meet and a few I have had the delightful privilege of meeting already. I met them all through my blog and through my Facebook page Living With Blooming Autism
When you start to tell people your child is different, it can be a real make or break time between yourself and family & friends. Within months of telling people Eliza is autistic, our friendship circle didn’t just reduce, it pretty much disappeared. I was no longer welcome at coffee morning/play date sessions, Eliza was no longer invited to birthday parties. She was different and to some, she simply didn’t fit in with plans or ideas of how a child should be. Judgemental? Yes. Lack of understanding? Totally. The day a ‘friend’ told me to adopt Eliza to someone else so I could get on with my life was a moment that changed me and still gets to me even today. At 40 years of age I panic at the offer of friendship. That fear of being tossed aside and pretty much abandoned (at a time I really needed people the most) is always there in my head. The pain I felt in my heart that my beautiful daughter was not wanted by others because she didn’t fit their perfect ideas and lifestyles is always there in my head. Luckily I have been honest and open to the lovely friends that I have and they understand why I sometimes take a while to put myself (and Eliza) back out there for things. It’s not easy to regain confidence after something like that which was caused by something you and your daughter have no control over.
A couple of years ago I started our Facebook Page. It was an outlet for me, a way to spread awareness and understanding about autism but also a place to share stories about Eliza and how she progresses. Through that page and then this blog I have met some amazing people. Some are becoming very close friends and quite a few I chat to on a daily basis or regularly. A few have even met myself and Eliza. Some are fellow page owners/bloggers, some are parents/carers, some are teachers, some are autistic adults. Quite a few are a combination of those groups. All different backgrounds, some different Countries and various ages. A bunch of amazing people. They all just ‘get it’ when I rant about stuff or celebrate something that might seem so small to others but these guys know how important it is. We learn from each other because every single life story behind each of us is so different. We share our celebratory moments with each other and sometimes our darkest ones. We pick each other up on the days we feel like giving up, we celebrate the successes of each other no matter how big or how small. We fight sometimes, we bicker (let’s face it life is extremely hard some days and we are all exhausted) but we make up and we move on without grudges. That is why I call them my extra family. I need them. I like having them in my life. I love that they want us in theirs. Some of them I may have not met face to face yet, some I may never meet in person but they are part of my life through meeting online and making our own support network.
I love my family, my friends and I also love my extra family. Because of all the people I have met along the way, these are the ones that matter the most. These are the ones that are making me, me! The ones that accept and love us no matter what and continually offer support and understanding. Those of you that chose to walk away I thank you, because you helped make me the person I am today. Such a shame you won’t get to see the amazing person my daughter is. You chose ignorance over understanding and acceptance. Some of you just didn’t understand but rather than ask you moved on. You are missing out on so much. I will be fine. Eliza will be amazing. Because we have the people that matter.
This time 8 years ago I sat in a hospital bed waiting for Eliza to make her entrance in to the world. She was almost a week overdue and I had been taken in a day earlier to be induced. I sat there wondering what she would be like and imagining the things we would do together. I was also terrified and in that ‘first time mum’ moment. I sat panicking if I would be a good enough mum and worried about all the decisions I would be making in the future around , for and with her. I tried to sleep thinking of all those firsts we would have – first word, first tooth, first school…. but having already been in labour a fair few hours I was exhausted but unable to rest because of all the monitoring and Eliza had decided being in the ‘back to back’ position was how she wanted to arrive which made the labour a lot harder for her and a heck of a lot more painful for me. Eventually Eliza was born early the next morning. I remember staring at this beautiful little bundle and thinking “It’s OK Princess, whatever happens we got this” and feeling all would be wonderful and amazing.
Less than 18 months later I found myself fighting my first battle, a battle to be heard because everyone was brushing me off and saying I was overreacting when I stated my concerns that Eliza was not progressing well in certain areas. So many people telling me “She’s just a late bloomer”, “She’ll crawl soon enough” and “It’s just a speech delay”. Nobody seemed to listen when I said she had LOST speech, that we had actually had speech and it was like a switch had been flicked and it had been erased. Nobody seemed to care that Eliza didn’t even try to stand let alone attempt to walk and her crawling was done with much struggling. I was made to feel like a rubbish parent, one that overreacts and I was shown the door by the GP and various others. As Eliza approached her second birthday we should have been offered a ‘2yr check’ to discuss how she was progressing, any concerns etc (It’s offered to all children but these days done around 18 months old instead) but lack of Health Visitors at that time meant we simply got a letter saying “If you have any concerns, call us”. So I did. I called and was given the same old speel about allowing her to develop at her pace, each child is different blah blah blah. I knew all this of course but I also knew there was more to what I was seeing in Eliza so I shouted. I shouted at the lady on the end of the phone and told her “You need to LISTEN to what I am saying please!”. So after hearing the desperation in my voice she asked me to tell her my concerns. I told her the speech had started but then gone, that Eliza showed no interest in wanting to walk, that she played alongside kids but never ‘with’ them. That she did not communicate a single need, barely cried and was always frustrated. That Eliza could not hold a spoon or coordinate her hand to mouth at all and struggled with fine motor skills. That we seemed to have the most epic tantrums in the world over the smallest thing (which in later months I learnt about meltdowns and why the smallest thing would trigger them). We were called in for an appointment the same week.
Eliza was diagnosed at 3 years old as Autistic Spectrum Disorder with moderate-severe learning difficulties. It was a day of relief for me. I know that sounds odd to some. To know that I wasn’t the crazy parent I had been made to feel I was because there on this piece of paper was a reason behind my concerns and Eliza’s struggles. All the fighting to be heard had worked. All the waiting for appointments and then attending what felt like hundreds of appointments had got us to this point. The last five years have gone so fast. Teaching Eliza to use PECS (Picture Exchange Communication System) so she could communicate was hard work. She spent half her time throwing the PECS folder at the speech therapists head and the other half trying to eat the pictures! Eventually she realised this little book could achieve great things (well to Eliza it was mainly about getting food and going outside, her main priorities in life). We also learnt Makaton signing which she was really good at (to the point I often had to go google what she had just signed to me because she was so much better at it than I was). Around the age of 4 the spoken words started to return. The next couple of years her speech slowly improved and it soon became clear she could read extremely well but we just hadn’t been aware of it, she’d not been able to tell us till then. Eliza always used small sentences, usually 2-3 words at most to communicate until one day at School she decided to throw her opinion and advice out there. A hula hoop had been thrown a little high and had landed on the roof at school. Out of nowhere Eliza stated “You need a broom and a chair to get the hoop off the roof” (or similar words) and carried on about her business whilst her teachers, speech therapist and later on myself stood open mouthed at this speech that was also spoken in context. Needless to say we changed her speech therapy goals lol
So now, here I sit writing this and wondering where the last 8 years have gone. Our journey may have different twists and turns that I wasn’t expecting but that’s OK. We’ve still had all the firsts I mentioned before but the first word she said, I cherish because after speech regressed it took years to hear her voice again. Eliza never stops trying, she doesn’t give up. She is thriving in School and learning all curriculum, she reads extremely well and she is making friends now she has learnt to develop her social skills and interactions. She fights the anxiety that often tries to take over her life and over the last 8 months has tried so many new things including trick or treating and carol singing. Eliza changes every day in to a beautiful, independent, feisty young girl with an inherited sarcastic sense of humour that she gets from me. The journey has been hard at times but it has also been amazing. She just keeps blooming.
Happy 8th birthday for tomorrow sweetheart. Our journey may be different to others but it’s OK Princess, whatever happens we got this xxxxxxx
I love those days where I get to relax and switch off. Run myself a lovely bubble bath and lay there for ages, choose a book to read at leisure and ignore the phone if it rings. Randomly call a friend to see if they are free and want to meet for lunch or go shopping for shoes and enjoy life at a pace that I choose. Spontaneously jump in the car and go and visit family or even have a nap in the afternoons or take a yoga class. Ahhhh self-care, looking after me! These much needed moments to reboot my brain, process things and give my body a rest. It’s how I take care of myself……….. WAIT, that’s not quite right. Oooooh brain, what are you doing to me? Did you forget we have children, a house and endless appointments and a million and one things to do.
Let me give you an example of a typical
day morning in my life… (even I didn’t realise how long my day was, this blog could become a series discussing 24hrs so let’s stick to morning)
Dragging myself and kids out of bed early (ish), get them cleaned, dressed, fed and one ready for School remembering the packed lunch, reply to the fifty pieces of paper sent home by School the day before about photograph day, assembly, that I understand about the current bug going around, blah blah blah…… Throw in the bag PE kit, check I signed the reading book schedule, did I send money in for that School trip?, Should I send it again because I really can’t remember. Is today the day they go swimming? Has she got her shoes on? Answer the same question around fifty times “Can I have my kindle please” with the same reply “No because it is time for School, Kindle is for later when you get home” and listen to endless whining because that is the answer she really did not want so she starts with the “Oh but Mum pleeeeeeeeeeeeeeeeeeeease just for five minutes…..”
*School bus arrives and breath, that’s one out of the house for 6 hrs*
Chase the giggling toddler around to change his nappy because he thinks it’s hilarious to run around all stinky. Answer his constant request for cake/sweets/chocolate with a firm ‘NO’ for what feels like hours, build a Lego tower with him thirty five times to have him knock it down thirty five times because he likes that, tell him numerous times not to stick his fingers in certain places, please don’t feed the cats for the fifth time today, can we not throw crisps on the floor please and reply to the million times he asks “Wot dat mom?” as his thirst for knowledge grows. Phone School and remind them I will pick the girl up early for an appointment later because I forgot to write in her communication book about it and then ponder the forty two mile round trip later for one five minute appointment. Did I put the kettle on yet?
Put TV on with rubbish cartoons that will keep him busy for a few minutes so I can get the laundry started because if I don’t then soon we wont even fit in to the room with it. It’s out of control, I mean seriously how many clothes do four people need??? The washing machine must hate me, it never gets a rest ever. I sympathise, I know what it’s like constantly on the go, I feel it’s pain…… Oh, wait I’m now giving the machine love, understanding and feelings. *Sleep deprived mum here* Make a cup of coffee. Unload and reload the dishwasher, sweep the floor because my children’s mouths are clearly not big enough and more cereal ends up on the floor than in bellies. Plug in the kindle to charge or they will be hell to pay later. Stand on Lego and yell (not compulsory yet seems a daily part of my life) and it won’t be the only time it happens. That stuff gets everywhere, how did it even end up in the kitchen! Empty the bin but first taking out dolly, random shoes, the TV remote and my phone that the boy has put in with his attempts to be helpful and “I tidies up looksie” whilst praising him for lovely thoughts but explaining that we kind of wanna keep these items.
Find a toy that occupies the boy and offer him a snack so I can now go on the phone to chase up the missing appointment letter for his sister that they insist has been posted twice, call the pediatrician and get an appointment to discuss why the girl wants to eat paper, sponges, play doh……. they soon get the idea and an appointment will be posted (we’ll chase that in a few weeks of course). Call Doctors and order medications, call family back because they called like six weeks ago and probably assume I either moved or died, answer the phone to people trying to sell me insurances, new boilers or have I had an accident in the last however many months and would I like to claim something blah blah……. Answer the door for parcels and packages that are rarely mine but because they neighbours all work (and the postman knows I am always home) my stairs become a temporary post depot storing beautiful wrapped bundles of what feels like shoes, toys, car parts and the occasional mysteriously shaped package that takes up far too much of my mind as I wonder what it is. Down that cup of coffee I made two hours ago. Who cares if it is cold, it’s caffeine baby!! Chase boy around again having spent twenty minutes asking him “Where are your shoes?” and him answering “ummmmmmm” and throwing his arms in the air with a ‘who knows’ look about him before finding them in a plant pot because that’s where he decided they lived yesterday. I should get dressed, I’m not sure shopping whilst wearing ‘Harry Potter Rocks’ pyjamas are adequate or acceptable clothing for Aldi. Take the boy food shopping and secretly want to tie his arms together so he can stop grabbing stuff and putting it in the trolley because I really don’t need a pack of liver, a dog toy or aspirin…. actually leave the aspirin in the trolley as I am feeling the need for one pretty soon and it’s not even lunchtime.
You get my point right? As parents we lead such busy lives sometimes we don’t even get to think about self-care let alone act upon doing it. We forget. We actually forget to look after ourselves. In my house I am last to bath, last to dress, last to eat and I often sacrifice any free time I have to do stuff for or with the kids. I have 2 small people that rely on me to get things done so yeah I always put myself last. It’s overwhelming and exhausting just surviving each day. Self Care? I’m pretty sure I do it but the basic minimum level. A quick five minute bath on the evenings might be the first time I got to myself all day. So I set myself mini goals – longer bubble bath, read a few pages of a book, do some crafting or card making as I love it and find it relaxing. I try and give myself time to be me. It’s not always possible because life is so busy and I am OK with that. I manage. My kids are happy. There are clean clothes for them, food on the table and they are happy. We read stories together, have cuddles and it makes the busy days all worth it. My goal tomorrow is to drink warm coffee (even I am not stupid enough to say hot, never gonna happen as I have a busy day ahead so lets say warm #smallgoals).
Thank you for reading. This was part of a ‘Finish the sentence Friday’ post hosted by the fabulous www.findingninee.com/ 🙂
You can follow us on Facebook at http://www.facebook.com/LivingWithBloomingAutism/
There are so many things you can say to a parent or carer of an autistic person. Sadly some of those things are inappropriate, cruel or rude. One thing that I hear far too many times is just ridiculous. I bet you have heard it too often too…
“THEY DON’T LOOK AUTISTIC”
What kind of statement is that? I really don’t understand why on earth someone would think this is a good thing to say. I am a member of a few parent support groups online and today I have come across no less than 11 different parents that have been told their child doesn’t look autistic this weekend alone! Why? What possesses people to say something so utterly crazy? What do they think autism looks like? I am baffled, truly baffled at why we hear this all the time. So here it is, let me show you what autism looks like….
Shocking isn’t it? She looks so much like a ‘normal’ young girl (another thing best not to say “Oh but she looks so normal”). She’s not green, she’s not a giant, she doesn’t glow in the dark or multiply if she eats after midnight. She is simply Eliza, an autistic child. So again I ask why people think it’s OK to suggest she should look different because she is autistic?
You can follow Eliza’s journey on Facebook at –