It’s been a while since my last blog post, I honestly don’t know where the time has gone. This year just seems to have just flown by!
So Aaisha is back for her second year at college. She seems settled after a long summer break. She has a new timetable this year but has taken to the change well. This year she will undertake a work experience placement which will equip her in increasing her confidence and build on her social skills through interaction with other adults.
Transition has always been a struggle for Aaisha. It’s part and parcel of the daily Autism routine but we expect this and are ready to take up the challenge.
Aaisha turns 21 in November!! As a mother, I am so excited if not a little afraid that this huge milestone has come around so fast! My first born is technically a fully fledged adult! But what does the age 21 actually mean to Aaisha? Her birth certificate is clear testament to the fact that she is officially 21, but with a little sadness in my heart, I also realise that her celebrations won’t be the same as others 21st celebrations.
How old is Aaisha technically? Well that’s actually a very difficult question to answer. Some days I would say she’s actually 5-6. She understands when given simple instructions and follows guidance. Other days I would say we’re back to the toddler stage, where everything just goes above her head. Some days we’re happy and others, just sad & angry. Do I know what kind of day we’re going to have? Well that’s a bit like keeping a umbrella in your handbag because you might think it’s going to rain. You just never know what to expect and to be fair nobody else does either. Does it get easier? No!! I can only share what it’s like for us. Every journey with autism is unique.
As she gets older and at 5″ 7 she’s a fully grown young woman but still being cared for like a young child. We talk about how difficult life is with autism and how challenging it can be but it goes so much deeper than that.
I still brush her teeth, moisturise her face every morning and evening. She had started getting in the shower by herself but she can’t shower properly. There are other aspects of her being a young woman that are often taboo and we’re not supposed to talk about. Let’s remember autism is a lifelong development disability but it doesn’t stop your body growing as it should.
In the hot weather I have to shave her legs. Does she care if she has hairy legs or arms? Probably not! Do I care? Yes! Would any other 20 year old walk about in shorts without shaving or waxing their legs? No they wouldn’t so why should I let her walk around like that?
Does she understand her menstrual cycle? No, she doesn’t. Does she really need to have her periods? The simple answer is no! She’s not ever going to have children or get married but I can’t control nature or the way her body develops. That itself presents huge challenges in getting her to understand. How to deal with her hormones during this time is one of our biggest challenges. Buying clothes that she will feel comfortable in, making sure the neckline Isn’t too low because in reality she won’t understand if it is.
Shoes!! She has never worn heels and never will. She still walks on her toes somedays, so trainers or flat shoes that will hold her feet in place when walking are the only things we can buy. These little things prove to be some of our biggest challenges and at times I feel that nobody truly understands how frustrating it can be.
Having a girl on the spectrum presents many other challenges that nobody else might even think about. I’ve always been open & honest about our journey with autism. I won’t be able to fully get you to understand it if I sugar coat everything. Do I think about sexual abuse? Of course,! How would she tell me? Would I know? These are some of the little examples of what living with autism is really like. Some days I drive myself crazy thinking worst case scenarios in my head, but at times you also have to learn to stop before you have your own breakdown.
What will she be like in the next 5 years? I can’t even predict the next 5 days let alone 5 years. You slowly learn to address issues as they arise. In the mean time all I can do is raise awareness & understanding for those living with autism. I simply hope that it makes others journeys with autism easier, so they don’t feel ashamed or the need to hide their children away.
Miss P Malhi