Development Journal ( 3 ¾ Years Old )

I’ve been meaning to do an update on Aiya’s development for a while and I’ve just realised it’s been a year since my last post! It’s been a busy year and a lot has been going on for Aiya, as well as the family. In February Aiya had hip surgery to correct hip dysplasia, post-surgery she was in a full Spica cast for 6 weeks and then a brace for a further 6 weeks. She also started Immunoglobulin therapy in February to boost her immune system, giving her a fighting chance against infections. Aiya then underwent tests to investigate why she has high blood pressure, this included cardiology examinations, Renal ultrasounds and a kidney function test. For about 6 months we worked with the SEND (Special Educational Needs and Disability) team to pull together an EHCP (Education Health Care Plan), to secure Aiya a nursery place at the local special needs school.  She also had an annual MRI and numerous eye investigations each lasting several hours to identify her visual ability and what the cause of the visual impairment is. Aiya was also booked in for an eye examination under general anaesthetic and surgery to remove cataracts. However, on the day the doctors decided to cancel the surgery, as they felt the risk of putting Aiya under general anaesthetic did not outweigh the benefits of removing the cataract or the investigation. In September Aiya started nursery 5 mornings a week at the special needs school, hence why I’ve got a little time to update Project Aiya.   All of these goings-on probably merit their own post as there is so much more information behind each one, so I will do my best to go through each one in detail at a later stage.

Its not only been hard to do an update because of all the various things going on but also because every day is different with no pattern or routine, being a creature of habit, it can be hard to go with the flow. This means we have good days and bad, when it’s hard to focus, because I’ve had very little sleep, or I’m just trying to keep my head above water. Despite this I try to be positive and focus on the task in hand rather than getting bogged down, which unfortunately does mean things like updating Project Aiya get a little waylaid, as I find the best way to cope is to tackle one thing at a time and then move onto the next, rather than having lots of things going on at the same time. I’ve come to the conclusion that multitasking is not good for my mental health or anyone’s really, but unfortunately that seems the only way to get things done in modern life.

Aiya has become a real little madam and is living up to her nickname ‘Princess Aiya’. She knows exactly what she wants and will try very hard to get it even if that means throwing a strop that no one understands to get it.  Aiya is still completely non-verbal, but has started to use her hands to indicate she wants something, she reaches out to people to pick her up or objects that are within her reach and eyesight to grasp. The hip surgery in February set her mobility back enormously, as the Spica cast restricted her movement, she was stuck in a horizontal position and could not sit up or take weight through her feet. She lost the ability to sit up, which she has finally regained over the past month.  During this period, she also developed a lot of behavioural issues, my family laughed when I said this, as how can this little angelic looking girl have behavioural issues. They laughed until they witnessed a meltdown, she became very frustrated and annoyed by the cast and the only way she could express this frustration was by screaming and crying. She learnt that if I scream and cry people will give me attention and pick me up. There is a part of me that is proud that she is able to express what she wants and manipulate us for her own end, but if you have to deal with it every day it can be exhausting.

Children having tantrums is hard enough to reconcile, but trying to deal with a child who does not understand what you are saying and will only relent when you figure out what the trigger is, which she has no way of communicating to you, is very difficult. 3-year-old children will have melt downs for the most ridiculous reasons the beaker is the wrong colour, the beaker is less than half full, the list is endless. With an atypical child you can try to negotiate or explain that their behaviour is not ‘good girl /boy’ behaviour even if they choose to ignore you. With Aiya she will continue to scream until, A – she’s tired herself out, B- you’ve finally figures out what the trigger was or C – something has been interesting enough to distract her which may or may not have worked the last time she had a meltdown. Therefore essentially I’m stuck in the ‘best’ child development stages, 6-9 months where children are completely reliant on you for everything and emotionally want you all the time, are not sleeping through the night, still need nappy changes through the night as well as during the day along with the tantrums of a  child going through the terrible 2’s / 3’s . Oh, and none of the normal ‘tricks’ work to get the child to do what you want, so she gets whatever she wants. Princess Aiya is the ruler of us all!

In theory I should be a woman on the edge, and to be honest some days I am, but most days this crazy girl has me in awe of what she can do, even if sometimes she’s hard to deal with, she’s developed a personality, she is strong willed and knows exactly what she wants. My father’s helpful words are, ‘well she is your daughter, what did you expect?’. I can’t help laugh when she gets cross especially when I know what she wants, as you can see her cogs whirring trying to figure out how to get it and despite all her challenges, she is determined and spirited. I am so proud of her spirit and the fight my little girl puts up for everything, I can’t think of where she gets it from!