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.