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.

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Autism & Anxiety

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Dear Anxiety

It has been a while since you and I fell out. Today you made me angry even though I was not your target. You see my daughter is 6 and she is autistic. It makes her day to day life extremely hard at times as she attempts to navigate a crazy world and find her place in it. It’s not helpful when you come along and add to the mounting stress she feels. I know you often tag along with your friend autism, you seem to be closely connected.

We had a lovely play date arranged with some close friends in a park we often visit. The school holidays throw her out of her comfort zone but she copes really well with planning. It should have been a lovely day. Plan we did, prompt we did, talk it through and off we went. Some days there just isn’t enough planning in the world, you just seem to grab her regardless. My beautiful girl was crying, screaming and kicking the seat in the car. She hit her little brother, she threw stuff she could get hold of. Refusing to get out of the car we sat there, her crying and her brother unsure whilst I decided on the next best step for all concerned. You had her, you were winning.

I wanted to yell and scream at you Anxiety. I really did. I wanted to rip you out of my daughter and stamp on you a million times for what you do to her. I wanted to swear at you and boy did I have some select words just for you. I wanted to cry, truth be told, because I am exhausted, overwhelmed and often feel out of my depth trying to do what is best for her. Trying, as a parent, to make her world as easy and understandable as I can whilst at the same time keeping her safe. I have to think with/about/for her 24/7 and when you decide to stop by it is a hundred times worse because she becomes ‘flighty’. Likely to run at any given chance and with her lack of danger awareness, it is bloody scary.

Instead I wish to thank you, Anxiety. You see every time something like this happens it makes me a stronger parent, ready to face you the next time you decide to gatecrash our lives. You know what else? With my help (and maybe a little stubborn attitude) she got out of the car. She had a few moments on the floor waving and kicking her arms in the air and I let her. Why? Because she was releasing you. She was angry at the feelings she was having. Deep down she wanted to see her friends, to go on the swings, to eat the picnic we took with us. After she started to calm I bent down and gave her a choice – go to the play day or get back in the car and go home. I was calm and fair, she knew either would be OK with me and do you know what, she chose the play day and after a few more minutes calming she had a great time. It was a lovely day after all. You are a pain in the backside Anxiety and believe me when I say I HATE you, I really mean it.

Thank you for attempting to take my daughter down today, you have shown me even at the age of 6 she isn’t going to let you win. She made a choice to put you to one side, remind you that you don’t get to rule her life. She was able to release her feelings safely inside my car and make a decision to keep going. I would say better luck next time but that just suggests I offer you seat on our next day out so instead I will just bid you farewell for today but no doubt you will be back at some point. We will of course be ready for you every time.

Yours Sincerely

Eliza’s Mum

The start of something beautiful

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There was a time I feared the day that Noah found his feet and mastered walking. I wondered how Eliza would tolerate the fact that a chunky uncoordinated toddler would then be able to touch her stuff. Sharing can be difficult for her, she has little concept of time and waiting but school have been amazing at helping her with that and ensuring lots of turn taking happened for all kids her age which in turn aided her social skills in general. From the day we came home with Noah I admit I pretty much forced him in to her life. In a previous blog I mentioned about how hard we prepared her for the arrival of him by role playing with a doll, letting her choose his name and making sure she was as involved as possible. I insisted on contact, sat him on her with one of us next to them (after years of witnessing how far she can throw toys when bored!). I also made sure she had quality mummy time so she did not feel left out or replaced.

Over the first few months she didn’t do much with him as he was so small but I would often catch her looking at him, stroking his head or just sitting by his Moses basket watching TV. Once he was a bit bigger and sitting in bouncy chairs she would often go sit by him, rock his chair a bit and even retrieve his dummy when he dropped it. If he cried she would yell “baby crying mummy” and tell me what she thought he wanted “he needs a drink” or her favourite “he needs an iPad” in the hope that she would score extra iPad time as he was clearly to small to hold one! When crawling started she thought this was great as he followed her like a little puppy everywhere she went. We were often ready to save him if she kicked off as he licked her books, chewed her dolls shoe or (God help him) touched the iPad yet she didn’t. There was the odd moment of “NO NOAH!!!!” then a smile or a giggle and it passed. That boy gets away with so much more than we do as parents. Her tolerance and patience towards him is wonderful. She entertains him in so many ways all we hear once she is home from school is him giggling uncontrollably at something she is doing. She actually WANTS to spend time with him, to interact and share, to be the big sister.

He walks now, bless him and his uncoordinated drunk looking style of movement. He is a big lad with crappy tiny feet, so top heavy. Secretly I think she is excited he can walk as she has started playing ‘chase’ but her own version (she shuffles off around the lounge and pauses enough for him to catch up but not enough for him to grab her before she is off again). She insists on pushing him on the swing in the garden or helping him bounce on the trampoline. She shares food with him (Eliza shares food with NOBODY!!! Food is her passion so this is huge). The bond they have is beautiful and I am so proud of both of them but I am extra proud of her. Autism makes her life so difficult sometimes, she can struggle with things that her 18 month brother finds easy already. She has changed so much over the last two years and I am overwhelmed by how she has taken to Noah and taken on her big sister role. Together they work, together they are a team. They love each other. I love them both.

She can’t talk YET…

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This picture popped up on my phone this morning on an app I use that shows past posts to Facebook over the years. This was 2 years ago when Eliza did a settling in session at school in her transition from mainstream nursery to special school. She looks so young. She was 4 years old and spoke only a handful of single words, the most popular being “no” and “mumma”. I stared at the photograph for ages, remembering how different she was back then. PECS on the table (Picture Exchange Communication System). So many hours of my life were given to printing and laminating pictures for that. We had picture prompts all over the house including ones that step by step told you how to use the toilet and wash your hands. Thankfully all our friends and family were quite aware that if they needed to pop to the toilet at ours they were likely to see instructions on the walls informing them of the upcoming process!

When she started school we were unsure if she could read so I made tags for her bags. One side had her name, the other had her picture. I laminated them and put ribbon on them and attached them to her school stuff thinking even if she can not read much, she could see her face and know they are hers. They were great and many other parents asked about them so it became an ice breaker talking point during her first few weeks at school. We still use a routine board at home but she doesn’t really need it anymore. We are moving to just a whiteboard and written words only which is what school are now doing. You see just before her brother was born (he is almost 18 months) her speech started to kick in and it kept going and going and going. We have not used PECS for 14 months or more. Still likes visual prompts at school but I think more for habit/comfort.

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I look at that picture of her and her PECS and I think back to just last night in our garden where for a good 20-25 minutes she gave me (and the neighbours) a fantastic attempt at singing “Let it go” whilst splashing water everywhere pretending it to be ice. She sang! She tried so hard with all the words. A wonderful memory for me, one that makes me think back to that “specialist” who told us she would never speak and “don’t expect much from her”. Written off by him before she was even 3 years old. If I were to meet him now I would have some choice words just for him and I would show him the video of her singing. We only saw him once, after he decided she was nothing we chose to write him off and get a new Doctor. In a weird way I want to thank him. His appalling attitude and advice angered and hurt me so much that I was going to try everything to prove him wrong. I never stopped hoping she would speak, although at times I cried myself to sleep when the “what if she can’t” thoughts popped in to my head. I saw a beautiful post yesterday reminding us to always say ‘yet’ when talking about what our children can not do. I always did this, always. She can’t talk YET, she can’t ride a bike YET, she can’t read YET….. She can now do all of those things and she can sing. That picture has been my biggest reflection point to date.

NEVER EVER STOP HOPING, DREAMING, BELIEVING. It’s what keeps the parents going. Don’t be scared to push the comfort zones of the child now and again but know the limits too. Always add the word ‘yet’ as you never know when things will change. Then sit back and wait for that moment when you find a picture or a message from a little while ago that will smack you in the face and make you realize just how far you have come already. Hold on to that memory for when the next rocky period appears and you need a reminder of why you are doing this, why you keep going.

She’s not broken, she’s perfect to me.

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I must apologise for the lack of posts! It has been a couple of weeks where life just took over. Changes at school, poorly me, poorly dad (mine), 2 nights out in 1 week for me (that is my social life done for the year lol). I am also busy preparing for the school holidays. Term finishes here in 3 weeks time and she has 7.5 weeks off so I am attempting to put some plans in place so she retains some kind of routine. I also have Noah, nearly 18 months old, constantly on the go so I have to wait until his 15 minute programme comes on in the mornings (roots him to the spot!) so I can read messages and reflect on things.

I found myself remembering a few things lately after a conversation with another parent. The parent is actually rather lovely and we were discussing the children. They are aware I have an older child with Autism. The question I knew someone soon would ask was asked “When will you know if he has autism too?” meaning Noah who was shuffling around at my feet. I politely explained that at this current time there are no obvious signs but he is only 17 months old. I was not offended, I knew someone would ask that soon and I know the question was a genuine, honest one. In many ways I would rather people ask than just stare or assume. It is quite refreshing having someone willing to take that step and cross that line which so many are too frightened to do for fear of upsetting or offending me. It did, however, remind me of another conversation where I wished the words had been of better choice.

When I was pregnant with Noah I was asked a different question. I was chatting to a couple of mums about babies, you know where you all get so excited about what sex will it be, what buggy will you buy. That kind of light hearted conversation. Then one of them asked a question that I was totally unprepared for at that time. She proceeded to ask me (whilst pointing at my growing tum) “are you not terrified there will be something wrong with that one too?”. I knew what they meant but the choice of words really hurt at the time. ‘Something wrong’ – Eliza has Autism yes but the way that question was worded made it feel as if they thought she was broken, needed fixing. The truth was, I was terrified there would be ‘something wrong’ with the baby but surely every parent feels that way. All these scans and tests you go for in pregnancy, they always made me nervous. The relief you feel when they say “all is well” is huge. Although its a bit hazy I am sure that is pretty much what I replied. that every parent worries about them blah blah blah but I was hurt. I know they probably didn’t intend that to happen, I think the choice of words could have been better but it set me thinking for days about how many people might see her as broken or wrong. It stuck with me for ages and even now as I type I can remember feeling so deflated. You see Autism is a part of her, we can not get away from that. She changes every day but it is always going to be there for the rest of her life. She is not broken, she is not weird, she definitely isn’t wrong. She is beautiful, she is changing, she is blooming, she is just perfect to me (They both are) x

Friendships and Imagination

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Like any child with Autism, Eliza always struggled with socializing and interaction however she never lacked friendships. Many kids just seemed to know she was a little different and it showed in their hesitant and gentle approach. The ones that really got to know her started to ask their parent’s about why she didn’t speak, why she still wore nappies, why she flapped her arms when excited and made funny noises. Thankfully those parents are very good friends of mine and wonderful parents and explained it to their kids in whatever way they could. I will never forget when a close friend told me that her son and his friend were discussing Eliza in the back of the car as she drove them somewhere. One boy asked why Eliza had gone to a different school and did not speak much and made funny noises and her son started to explain to his friend “…well you see she is wired differently to us, her brain is different so she needs a bit longer to do the things we do and goes to a new school for help ok?”. Both boys are the same age as Eliza and at just 6 yrs old they are trying their best to understand their friend and others that are like her. I am thankful to my friends that have taken the time to explain to their children and help them understand Eliza. I am lucky to have such loving and caring people in our lives.

The friends she kept from mainstream nursery and the ones she has made at special school have all helped her to develop in so many ways. Being very visual she would often sit back and watch things before trying them and has much more confidence now. School itself has been amazing and encouraging and helped her to be the little independent diva she is today. Imaginative play was extremely hard for Eliza at one point, she just did not understand why you would ‘pretend’ something or ‘act’ things out. I wanted to change that because I felt she was missing out on so much fun. So we did lots of role play with toys, dressing up in costumes, building with mega blocks and play doh. Finally about 2 years ago I sat sorting through the post that had arrived and I could hear lots of noise. When excited, Eliza stims – flappy arms and legs often accompanied by “eeeeeeeeeeeeeeeeeeeeeeeee” noise. I looked in to the lounge to see she had the play garage out and was pushing the car around up and down the ramps and enjoying it. I asked her what she was doing and she replied “car runs” meaning driving the car. Simple but the start of her imagination when it comes to play.

Often things done at school would then be done at home, showing me that she was learning how to play. Having had dolls and prams for ages that gathered dust in the corner, suddenly dolly would be given pretend dinner and a pretend bath before being walked around the house in the buggy a few times. Simple play that so many parents take for granted and I was finally witnessing it and better still, Eliza was enjoying it. She tried ‘baby ballet’ for a year when she was 3 and I think that also helped as often to learn certain moves or positions the dance teacher would say things like “Reach high as if you are grabbing the stars”. At first Eliza would look at the teacher as if to say ‘she’s nuts’ but then seeing the other girls do it, she was able to understand what was asked of her. The picture above is one I took over half term. We had the play doh out and we made cakes. I made a birthday cake with a candle (clearly I need to get out more judging by the effort I put in to that cake) and I held it up and showed her. She grinned and shouted “Happy Birthday Eliza” and pretended to blow the candle out. She melts my heart.

I often push Eliza’s comfort zone and boundaries and I feel confident that I know her limits for things. Baby Ballet was great for her as it helped with socializing as well as imagination, balance and learning to follow instructions. She has also tried Rainbows, sports groups and attends various play dates with her friends.  There is a definite love for dancing, she is at after school dance club as I write this. She wants to try cheer leading when school returns in September. I don’t mind what she tries and whether it lasts a week or a year I am just happy she has found the confidence to go out and do things. I really believe a lot of it is down to her little group of friends that always include her and, in their own ways, encourage her all the time. Bless them all (and the lovely parents) xx

Day Trips & Judgmental Whispers

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I love this picture, this ‘Prayer’. It became something I said in my head before we headed out for the day somewhere, almost to prepare me for any comments, stares and judgmental looks that we all experience at some point. (I take no credit for it at all, I found it a long time ago on Google Images and have seen it do the rounds on Facebook a few times).
How many of us FEAR going out because of other people’s reactions? How many of us NEVER go out because of them, because its ‘safer’ or easier to stay at home? It crosses my mind each time that it would be so much easier to stay home and shield us away from the stares, whispers, rude comments, judgmental looks and questions than to go out and face them. You see the people making us feel like this have no idea how hard it is for us to even go out! The planning we endure, the time that goes in to every detail to make sure we all have a wonderful and safe day out.
Our lives on a day out transform in to some kind of Tag Team effect with phrases exchanged between myself and the husband like “Whoever is not pushing the buggy shadows Eliza, she runs then you run, then we switch when we get to the cafe…..”. The kids get a great day out and we bundle them in the car to go home but before we do, hubby and I give each other a high five because we survived! Survived the day out, survived the looks and whispers and the added bonus is we arrived with two children and didn’t lose either!!
I certainly agree with the final part of “….wisdom to know when it’s time to go home” and this has been learnt through trial and error as such yet there are times I perhaps push my luck and in return push Eliza’s boundaries a little but only as I now feel confident doing so, knowing that I read her every move by the look on her face and trying to remain one step ahead of her as always.