Blooming Rainy Days

It’s August, and I can’t believe we are having such a rubbish summer weather wise. It’s been non stop rain for almost two weeks now, making it very hard to occupy the kids as they are off school until September. We’ve pretty much killed the play doh we have used it that many times, we can do all puzzles with our eyes closed and as for cakes…. We’ve made that many cakes that I almost fell off the scales in shock at slimming club when they said I’d lost last week! I’ve lost count of the amount of times that both of them have said “Mummy, stop the rain please so we can play outside”. Yesterday the rain stopped for most of the day and everyone went to the park and pretty much stayed there for hours making the most of the weather. We were lucky that a park opened just 5 minutes walk from the house so when the weather is good, we can head there and have fun and if the weather changes we can be home pretty fast. Eliza loves sitting at the top of the slide and looking over to the forest, people watching or admiring the birds flying in the sky. She can often be found sat there stimming away and just loving being outdoors. We also have plenty of things in the house to keep us occupied thankfully. Every year between June and July I stock up on things for the kids to do during the school holidays – lots of arts and crafts especially painting trinket boxes, decorating face masks and making silly hats etc, tie dye t-shirts to create, planting flower seeds, card making things, bead threading activities and other things. It gets us through the summer, especially on those rainy days.

It’s August, and I can’t believe Eliza completed a whole year at her new School in July. Where did that year go? She is so happy there and thriving. Her school report was amazing and it was lovely to watch her in sports day in the relay race. We were once told by a pediatrician that Eliza would never speak, read, write….. In true Eliza style, she is proving them wrong all the time. She loves reading, really enjoys her books and her speech is improving all the time. Her writing is something she has always struggled with. Fine motor skills are not easy for Eliza but she never gives up trying (although a fair bit of anxiety led verbal protests often happen before she picks up a pen). Friends that have been to see us recently have commented on how tall she is getting, how different she is each time they see her etc. In the last few months Eliza has started enjoying pop music and loves a good sing along in the car. She has also taken a keen interest in playing chess on the kindle after a friend let her play chess on his phone a while back. It’s wonderful to see her personality shining through and her willingness to show us what she likes and enjoys these days. She is growing up so fast.

It’s August, and I can’t believe that in just a few weeks Noah starts nursery! He is so excited and when his uniform arrived he just had to try it on. Well, he looks so grown up and very pleased with himself. This year he has really changed and he has the most sensitive, caring and loving personality (oh and very cheeky of course). Considering what he went through last year with operations, hospital stays and endless medications, he is just doing great. He has asked about nursery for so long he just can’t wait to go. Recently he had a settling session there and he cried because he didn’t want to come home, he wanted to stay and play! My little boy is going to nursery. He is ready, I’m not sure I am!

Well, summer might be a wet and cold one, but the kids are doing just great and whether I like it or not, they are both growing up. They are so different in personality, but so close despite their differences. They play and fight like siblings do. I am so very proud of them both.

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This blog was written for ‘Finish the Sentence Friday’ hosted by the wonderful Finding Ninee

 

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Ideas To Help Toilet/Potty Train An Autistic Child

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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 ***

Favourite Characters

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 😛 **

Visual Aids 

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

Suzie’s Toilet Time

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)

Lulu’s Loo

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.

 

Changeable Mum

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.

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This was written for the weekly topic in ‘Finish the Sentence Friday’ hosted by Finding Ninee and themeaningofme

 

 

The People You Meet…

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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 piece was written for  ‘Finish the Sentence Friday’ which is hosted this week by Finding Ninee and mardrasikora

She just keeps blooming

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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

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What do you think autism looks like?

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….

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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 –

http://www.facebook.com/LivingWithBloomingAutism

Striving for continence

I don’t normally talk about something so personal but I thought it was worth sharing our experience as lot of children struggle with continence. Continence is something Eliza has always struggled with. She is seven years old and wears pull-ups both day and night. There have been so many hurdles to jump including fear of small spaces, fear of noisy hand dryers and just being in a place that is always different. Lets face it, at home it is easier as the bathroom pretty much looks the same but when you are out and about every toilet place looks, smells and sounds different. It has taken years and I mean YEARS to bypass all these hurdles and we have gone at her pace with the odd nudge forward if we thought she was ready. There was even a time when she was a ‘smearer’ and for months we went through a regular routine involving bathing and cleaning rooms. I’m going to visualize so many parents nodding because they know what I mean. For those of you that don’t, brace yourselves…. Eliza would smear poop all over her walls, her clothes, her face, the carpet and any other surface she could reach. Mainly sensory led we worked hard to overcome that stage and *touches wood* it’s been a very long time since we saw any of that. It has been a long process of reassurance, explanations and visual aids but we are so close now. By we I obviously mean she,  Eliza is the one working towards being continent but I say we as it’s a journey of hers where I have always been by her side guiding her and preparing her. During the last few months she has been using the bathroom more and more and trying really hard to be continent.

After a lovely meeting with the continence team this week we decided it was time to take the next step and move from pull-ups (nappies but shaped like pants/knickers) to proper cotton knickers (Eliza has chosen to call them knickers but some of you may say pants, undies, underwear… but as Eliza calls her pull-ups ‘pants’ we needed a different word).  As it is such a change we thought using washable incontinence knickers would be a step forward – these are simply cotton and look like normal girls knickers but with a built in cotton booster to help with little accidents, you know those ‘not quite made it’ moments. The hope is as time progresses she will then just move on to normal girls knickers in time. We have extra books ready to help her learn about how it’s quite normal to use the loo etc. This is when I decided on a plan that may help her take to the idea even more.

Eliza LOVES Christmas, she adores Santa and every December she pretty much bounces rather than walks. So I decided to write her this letter…

elizasanta2016

This letter will be ‘delivered’ to her on Tuesday as she breaks up from School for the holidays. As you will see in the letter, we have mentioned Mrs Claus and a special present. To help Eliza with her next step towards continence and use her love of Christmas I am making up a pretty box, a ‘special present’ from Mrs Claus. Inside the box will be some pretty knickers, books, stickers and a new kids padded toilet seat (you know those ones you can move on and off as needed). It will be wrapped up and will have a letter from Mrs Claus attached. The fact that Santa, in his letter above, will have pre warned her about the present will ready her for the arrival of this special gift. This is the letter from Mrs Claus…

mrsclaslet

So that is my plan and I hope it helps her on her transition. I thought the special box should come from Mrs Claus, you know, girl to girl as such. So there it is, my cheeky use of something my child loves being used to try and help her with something she struggles with. It wont work for all children, this is just something I know will go down well with Eliza. Although I hope it gives some of you ideas that things like this can work. It doesn’t have to be Christmas, it could be linked to a favourite character or film. This is just something I know MY child will adore and be amazed at. Eliza is very visual, she likes to see/watch and to read and she will read the letters over and over with joy. I am hoping it gives her that extra boost in confidence to at least try the knickers and we will just from there, at her pace like we always do.