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’ ūüėČ )

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.

IMG_3379IMG_3380IMG_3382

 

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

 

 

The People You Meet…

lihobko

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

8gtyihujl

 

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

uyghb

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….

lbjkh

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.

A Special Little Girl’s Christmas

santa

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

mlmj

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.¬†