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.
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.
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.
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
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
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.
Having spent some lovely time in our garden yesterday when the sun decided to join us at long last (better late than never), I watched my two children playing together. I am just going to write that again so it sinks in…. I watched my two children playing together. Yes, they had a great time jumping on the trampoline and having a go on the swings. The bargain priced ride on tractor thing with trailer that I found on a local Facebook selling page went down well with Eliza ‘driving’ and Noah catching a lift in the trailer. For thirty minutes they enjoyed each others company and I loved watching them. I sat taking pictures, as I often do, to be greeted by Eliza yelling “say cheese mummy”.
Any interaction that Eliza faces is not always easy for her. Her speech only started in the last 18 months and until she started Special School 2 years ago, her social skills were fairly poor despite me taking her to baby/toddler/play groups from an early age. To hear her say something as simple as “say cheese mummy” is just beautiful because she can say it at last and in the right situation. The interaction between her and Noah is wonderful. She loves him, I do not doubt that at all and he gets away with so much with her. Her tolerance is incredible when it comes to him. I want to brush her hair and friends three streets away can probably hear her response. Noah pulls her hair really hard and she giggles and says “Noah, gentle please”. You could ask her for a crisp and risk losing a finger in the process but Noah ‘steals’ one right in front of her and she just looks at him and carries on eating. The bond they have is beautiful and strong and I hope it long continues.
I was never sure how Eliza would react to Noah, it really was 50/50. Having had us to herself for over 4 years, I worried at how she would feel when she suddenly had to share her parents but in particular, me. No offence to the husband intended, it is just that I have always been the parent at home. Even after she was born I worked nights when she was 6 months old so our days were free to attend baby groups, play dates and get togethers. When she reached two and a half and the word autism was mentioned leading to numerous appointments and therapies, I gave up my career as a nurse to be stay at home mummy. I traded in my 12 hr night shifts, training days and registration for a new life. One that was suddenly full of specialists, appointments, therapies and endless questionnaires and paperwork to fill in. I had a crash course in using PECS and learnt Makaton Signing just so I could communicate with Eliza who, at that time, did not say anything other than “no” and “mum mum”. None of this I write is intended to be a sob story, I have never once regretted my choice to leave my career. Simply days like this one remind me how far we have come on our journey already.
Preparing for Noah was a military style operation. By preparing I mean preparing Eliza, no saucy story about to unravel!!. We got books like ‘I’m a big sister’ and ‘Mummy’s tummy’s a house’ or something like that title. Once we knew he was a boy we got her a baby boy dolly. She had many dolls already but this one was a boy. Oh and he was not just wearing blue doll clothes, he had proper ‘boy bits’ inside his dolly nappy. Eliza is very visual and in many ways factual so she likes to see and understand things as they really are, hence the boy dolly. This doll went everywhere with us for a while – in the car in what would be Noah’s car seat (to get Eliza used to seeing ‘someone’ else in the car), I carried boy dolly sometimes so she saw me with him. We played games (tea party, hide and seek, role played) all involving boy dolly. We even let her choose Noah’s name. We had narrowed it down to 3 names we liked so gave her the final choice and she chose Noah. I don’t know if what I did had any impact on how she took to her brother the day he came home and how shes adored him ever since, or whether she is simply at a stage in her life where she understands siblings etc. Maybe a mixture of both. Whatever happened, its wonderful to see them together. I imagine it wont be long before I am sorting disagreements between them like any brother/sister duo but for now I will sit back and enjoy them just as they are right now.