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

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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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A Christmas nudge in the strive towards 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. Eliza 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. It has been a long process of reassurance, explanations and visual aids but she is so close now. 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 regular girls knickers in time. We have extra books ready  and social stories to help her understand as much as possible. This is when I decided on a plan that may help her take to the idea even more, a nudge in confidence by writing to her from one of her most loved people, Santa!.

Eliza LOVES Christmas, she adores Santa and every December she pretty much bounces through the month rather than walking. So I  wrote her this letter…

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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 help ready her for the arrival of this special gift. This is the letter from Mrs Claus…

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So that is the 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 but with the added mention of her in Santa’s letter. 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 with love and patience, like we always do.


***Editing on 30th November 2018 to add that the above went as expected and Eliza was thrilled with her special present from Mrs Clause and within 2 weeks was completely continent and has been ever since. She never bothered with the padded pants, she chose the regular knickers. She still mentions her special letter from Mrs Claus around this time of year***


 

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

The biggest thing that worries me is a thought no parent wants to have

Every single parent goes through moments of wondering what the future holds for our children. For some it is about college, University or employment and for others it could be wondering if they will get married, have children of their own. Those are daydream moments you get that leave a smile on your face. I have a child that has Autism, her learning disabilities classed as ‘moderate-severe’. As much as she improves on a daily basis with her social skills, understanding, communication; it’s unlikely she will live alone and always need some level of support and supervision. It worries me all the time, the future. For the time being she spends most of her days at school, loving being with friends and learning what she can. There will one day come a moment that scares me, the day she becomes classed as an adult. Long before then I will do my best to plan with her what she wants in the future but things change all the time.

“They finish school and do what…”

Services for adults with autism in the UK seem to be a postcode lottery with some areas having great resources and support, others having none. I have friends with older children who have now left school and have nothing in place because respite spaces are tight, funds constantly reduced and generally all services being cut or restricted. So the young adult ends up at home, with parents trying to fight a system that gets harder every year. What does the government expect the parents to do? Leave employment and take care of our children/adults relying on the pittance carers allowance they pay (£62/$81 a week for full time around the clock care). I know there are other benefits and financial help out there but the point being these children will one day grow up in to adults. Autism doesn’t go away, it is a lifelong condition. They finish school and do what? End up at home because of cuts to services, placements and support. It worries me, a lot. Eliza is only 7 years old so a lot can change in the years before she is legally an adult. I sincerely hope there will be more services in place by then.

“What happens when I die…”

The biggest thing that worries me is a thought no parent wants to have. What happens when I die? Who will take care of her? Will she manage without me? Who will understand her like I do? I could go on and fill this entire blog with questions that have gone through my head. She has a wonderful bond with her younger brother already and I know he will always be a part of her life but he will have his own life to lead. I would never expect him to take over her care in the future, even though I am sure he would. Sometimes I can’t sleep because of this question, what really will happen….. I have seen other bloggers write about similar thoughts so I know it isn’t just me thinking these things. We all worry for all of our children regardless if they have Special Needs or not but for those that are extra vulnerable, it sits at the back of your mind all the time.

“I push her comfort zones because she needs it”

 

Friends often comment about how much I do with Eliza, how we have tried so many different things already – ballet, gymnastics, cooking club and horse therapy to be a few. Why? Because she doesn’t willingly offer me information on what she wants or needs sometimes so all I can do is try things with her and expose her to new experiences. I test her boundaries and I push her comfort zones because she needs it, she needs to learn that the world will do this to her for the rest of her life. As much as we try and maintain a great routine, I often break it in the hope to show her that it’s OK when things do not go to plan because, let’s face it, life doesn’t always go to plan. If she can learn coping techniques and how to be a little more flexible, these will be great for the future for her. I will always try and show her new things, to keep teaching her about life. I read something on a Facebook page last year that has stuck with me ever since. It was a picture of a young lad and the words read something like “The greatest gift I can give him is to teach him how to live without me”. It hurts to read and type that because it hits home. One day we won’t be here for them, they will go on to face this world without us. We can hope services and employment opportunities will be there and that somehow a support network will guide them through what they need. So for now, I test Eliza’s flexibility and I try and expose her to new things. I help her come to terms with change, learn to cope with it. I push her boundaries so that she becomes used to different scenarios, situations and problems even now at the young age of 7. I hope to keep giving her the support and courage to try new things and live life to the fullest. This is all I can do as a parent because, like that post om Facebook said, she needs to learn to one day live without me.

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If stripping was in The Olympics….

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Are you watching the Olympics? I love it and often sit here making remarks like “If Eliza were in that contest…..”

If stripping was an Olympic sport, Eliza would win Gold every single time. In under twenty seconds she can undress and sit back on the couch, remote control in hand and Mickey Mouse on TV yet this is the child that simply can not undress herself for bed or PE at school…..

Flapping!!! Another Gold, she seriously looks like she would take off sometimes. Flappy when happy though, beautiful smile she has and when she is laughing she has a dimple that is super cute. I wonder if she could flap through high jump, she definitely has the long legs. We tried Gymnastics before with her, she told me how bored she was after only 2 sessions.

Sprinting, well I think we would all have gold medalists on our hands. Someone opens a bag of crisps and whoosh, she is off like a highly trained sniffer dog! Don’t ever forget how fast they go from ‘dead weight laying on the floor refusing to move’ to someone that would give Usain Bolt a run for his money at the blink of an eye.

Shot Put is another. Wow, how I have seen iPad’s and juice cups fly. Not to mention shoes, DS consoles, remote controls, siblings….

A judo/wrestling combo is something that happens daily in our house between Eliza and Noah. That grabbing of clothes, linking legs and throwing each other on the floor. Usually to decide who gets the TV remote or the last pack of crisps. Oh or a toy that neither of them played with for months yet one of them found and it’s suddenly like treasure!

Weightlifting I think belongs to us parents. Lifting that ‘dead weight’ child from the middle of roads, car parks, parks and bundling them safely in the car. Carrying them up the stairs or removing them from the top of a sibling they are sat on. I should have muscles like Popeye by now.

I love to reflect and I have learnt many things from what I have just written above…

– I watch too much Olympics
– A lot of issues are caused by crisps
– I need to get out more

Enjoy your Tuesday and the Olympics xxx

You can follow us here Living With Blooming Autism

Why routine is important to us and why we purposely break it

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I used to wonder if routine really worked when we first found out she was autistic. I remember the consultant, speech therapist and even nursery teacher all saying “Routine is key”. To me I was thinking what a boring life that would give her as I didn’t know or appreciate how bigger part of her life routine would become. They all told us to start small, meals at certain times and bath at certain time and so on, gradually introducing other things that were daily life. In time we created a daily planner board so we could add ‘extras’, you know the things that don’t happen daily but need to be seen as happening. Eliza is a very visual child, she likes to see (and memorize) what is happening in her life. When she gets a new timetable for school, she knows it lesson by lesson after a couple of days. Handy for the days that I forget what we are doing but she doesn’t and announces things like “Mummy, it’s swimming today”. Yes, my 6 year old has a better memory than I do!

Yesterday I had a phone call from school mid morning. Eliza had an upset tummy and had had diarrhea so, as per school rules, she needed collecting and has to be off for 48hrs minimum as a precaution. I popped Noah in the car and went to fetch her, checking in at reception to wait for her. The school nurse appeared and asked if I could go to class and collect Eliza as Eliza was refusing to leave class. So off we went, and as I entered the class room I was met with a ‘What you doing here’ look from Eliza and her not so subtle “Goodbye Mummy, see you later” announcement. She wasn’t being rude, she was in her right to say I needed to go because Mummy is never at school unless invited to class events likes sports day. She was confused as to why I was there. This was school, this was her thing and I was not supposed to be there. I had not been invited!! I got down on my knees to her level and asked her to come home, she refused. I explained in basic words that her tummy was poorly and needed a rest at home, she refused. I said I had found the ‘lost’ DS games (They do get ‘lost’ now and again if you catch my drift). That swung it and she got up and fetched her bag and we came home.

When we got home she didn’t want the DS, she wanted to get her sensory fiddle toys out so she did. I had pulled her from school in the middle of ‘Tac Pac’, a sensory programme. She then insisted on eating her lunch that was in her school bag because that is what she would have done. I asked her to get changed out of uniform and she became upset and told me “No, we go back to school now”. I said school had finished for the day and asked her what she wanted to do “Swimming time” was her answer because that is what she would have done in the afternoon. She got teary when I said swimming was not an option because of her tummy. So instead we got a blanket on the floor and pretended it was water, we pretended to swim and she giggled and smiled. When we reached about half past three in the afternoon, she stripped out of her uniform and fetched her pyjamas and asked for a juice and a biscuit. This is her usual routine when she gets home at around that time. She has an hour on her computer whilst I cook dinner so off she went and switched it on and she was calm and relaxed, no more tears and tension because she had some how made it through the day that I interrupted by bringing her home and now ‘normal’ had resumed for her. Even though she was confused and upset, she coped and we got through it by almost mirroring what she would have done in school so she had some sense of ‘normal’ in her day and it made sense to her.

It might seem small and pointless to some, but breaking a routine can cause huge meltdowns, stress, anxiety, upset and anger. That fear of the unknown, unplanned and unprepared takes over and any sense of calm and reasoning just disappears. Two years ago she would have had to be carried out of class screaming and crying because she would not have coped with such a change that was not planned. It is something we work on at home and at school. At school there are things that you can not plan for – snow day, fire alarm or unexpected sickness. There are times at home that I throw in unexpected plans in to her day because they will happen in everyday life as she grows older. Not everything can be planned for so I push her boundaries and comfort zones. I make her try new things like horse therapy or ballet knowing it will trigger feelings of anxiety, stress, anger but also knowing in my head and heart that she is capable of change and can cope when given the right support and understanding. Routine is important in so many ways but so it breaking it sometimes.