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.

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A Special Little Girl’s Christmas

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Dear Santa

As another Christmas approaches fast, I always think back to one special meeting we had a few years ago. It was a visit that changed how my daughter (and myself) saw Christmas and helped her enjoy what can be a stressful time of year that is full of change. Back in 2012 we came to see you in your magical winter wonderland with Eliza who was 3 years old. It was extremely busy as every child on earth wants to meet Santa and who can blame them, you rock! We had to queue, something Eliza wasn’t very good at them. The queue was in a very very VERY busy crowd of people, another thing Eliza wasn’t very good with. You see Santa, autistic children struggle with crowds, noise, waiting, busy atmospheres and change but Eliza had only one goal in mind which was to meet you.

“Merry Christmas to you all, you have a special little girl”

We spent what felt like years in a queue trying to entertain her as best we could and eventually reached the front of the queue. One of your kind elves led us to a door which opened and there you were waiting for us. The room was amazing and I was lost in the magic of Christmas as I admired the tree, the decorations, the smells and the lights. Eliza ignored you as you tried to ask her what she wanted for Christmas and whether she thought Mummy had been good that year (For the record Santa I am pretty good most of the time, honest). I nervously stepped forward and said “I’m sorry, she can’t talk yet” and you looked at me, smiled and nodded. Eliza wandered around the room being nosy, looking at her face in shiny baubles and picking up things that caught her eye. I started to move in a bit of a panic but you touched my hand and said “Leave her be, she’s OK. Nothing in here that can hurt her”.  A grumpy elf knocked and suggested time was ticking by but you kindly said we needed a little longer. Eliza carried on looking around and then she finally looked at you and came and sat by you. You quickly took this opportunity to greet her again and she smiled. She started to flap, it’s something she does when she is happy. Spontaneously Eliza leaned in towards your hand to give it a kiss at the same time you clicked a secret button to take her photo with you. I thanked you about a million times (probably at least ten in reality) because you made her visit so relaxed and comfortable. As we left the room you grabbed my hand and said “Merry Christmas to you all, you have a special little girl”.

The words you said to me have always stayed in my head. Every year we approach Christmas and I think of that one visit to see you. You see Santa what you didn’t know was that three weeks before we met you, Eliza had received her diagnosis of Autism with moderate-severe learning difficulties. She could not speak other than 2 or 3 words. The world overwhelmed her and she struggled to find her place in it. You made her feel so at ease and she had a wonderful time seeing you. For me as a parent I am so grateful to how you treated her and for the kind things you said to me. Thank you Santa for taking the time to let her anxiety drop, for letting her explore and just being understanding and kind. 

Eliza’s mum xx

Why buying Christmas gifts for my Autistic child is hard

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We love Christmas in the Blooming household. The smell of the tree and the dinner cooking, twinkling decorations all over the house and cheeky cats trying to nab baubles off the tree. Being swamped in wrapping paper and wishing you had purchased something square shaped because you are about to throw a gift out of the window because wrapping it is impossible. It really is a wonderful time. Like a lot of parents, I over shop and especially present wise. In fact for the last 6 years running I have had presents put away for birthdays the following year because I get so carried away. You think I would know better by now? Thing is, when you find something your autistic child is in to you automatically overdo it because it is so hard to shop for them at times. Eliza can have rigid and limited interests for months at a time and then all of a sudden she is in to something in a huge way and it is exciting for both her and the family. So yes, once I know what it is that has caught her attention I hit Google and search for everything to do with it and dish out the present requests accordingly and voila, one happy and contented Eliza at Christmas and a sigh of relief from all who struggle to buy for her. (I will add that this is now ‘the norm’ as family wait for me to suggest what to buy than get a present that isn’t suitable or will just sit in a cupboard for years). 

Before Eliza’s diagnosis I would go out and get toys and gifts that were suitable for her age. That’s what we all do yes? We look at the boxes and see the necessary ‘Suitable for….’ and statements that suggest this would be good for her learning the alphabet or that would be great for fine motor skills…..and then buy a bunch of age appropriate toys that would then go sit in a dark lonely wardrobe for months, sometimes years because she doesn’t understand how to use them or simply can’t because her fine motor skills are so poor. 

These ‘age appropriate’ toys were far from appropriate for my daughter.

After diagnosis (Eliza was diagnosed weeks before Christmas when she was 3) I still went out and got age appropriate toys as usual because at this point I still had no idea what I was doing. It wasn’t until we stated speaking to other parents with Special Needs children that we realised we needed to rethink a lot of things. Everything was a learning curve but we quickly realised that we needed to put a lot more thought in to Christmas and Birthdays. I had expensive toys just sitting there in boxes because she wasn’t interested. Eliza would rather play with the shiny bows from the wrapping or the bubble wrap it came in. Instead of picking up her shapes games and number learning toys she would flip her dolly pram over and spin the wheels for entertainment. These ‘age appropriate’ toys were far from appropriate for my daughter.

It’s not easy to buy gifts for an autistic child. It can actually be quite heart breaking to stand in an aisle full of beautiful dolls, tea sets, teddy bears and realise you may not see that kind of happiness and excitement in your daughter. You feel a little robbed of memories you have not yet had and may never have and then you worry that your child is missing out on such wonderful experiences. It’s a roller coaster of emotions as you battle against ‘the expected norm’ and what your child actually needs/wants/understands. So you go shopping and you pick up a few toys to take to the counter and pay. They are all for younger children and you can guarantee the cashier will ask you that one question you don’t want to answer… “Gosh how lovely are these toys, how old is your ‘little’ one?” and you take a deep breath and say “She’s almost 8” which leads to awkward silence and then explaining of why you chose them in the hope of spreading a little autism awareness so that when the next parent they meet is doing similar they wont look so disgusted or horrified. 

What you need to remember.

  • They are YOUR children and you know their needs, understanding and any limit to abilities
  • ‘Age appropriate’ does NOT mean it may be appropriate for any child in that age range. All kids develop differently so don’t be so hard on yourself because it’s the expected ‘norm’.
  • Every child is different and for some autistic children, age appropriate might be fine so go with what you feel best that suits them.  

It’s not easy buying gifts for an autistic child

One of the hardest things I did was to explain to friends and family that were buying things for Eliza that were never going to be used and to kindly stop. I felt so awful that they were spending hard earned money on beautiful toys but really it was being wasted. Not because Eliza was rude, not because she is picky or spoilt but because she simply wasn’t ready for that kind of gift at that time. So it was a learning curve for all of us but everyone understood. In our house we have two sides to gift buying and they are so very different. On one side you have Eliza who can be very limited in her likes and age appropriate doesn’t work for her but when she finds something she is in to you are on to a winner. On the other side you have Noah, her 2 year old NT brother, who wants every single toy he see’s on every advert or poster and age appropriate toys are quite good for him and his milestones. So yeah, buy for YOUR kids what you know they want/need and don’t worry about ages, brands etc. Most of all, enjoy Christmas together.