Life Skills I Struggle With As a Multiply-Disabled Person

Earlier today, Ann Hickman wrote an interesting list of ten life skills she is teaching her autistic teenager. As a teen, I missed out on most of these lessons she mentioned, leading to a big gap in my skills as well as my awareness of them.

Of course, lack of education isn’t the only reason autistics and otherwise disabled people may struggle with life skills. I struggle with many of them due to lack of energy, executive functioning issues and other things.

Today, I am sharing life skills I struggle with and why.

1. Personal hygiene. I remember vividly my sister gave me a deodorant for my fourteenth birthday as a hint. I didn’t get it. I wasn’t taught about hygiene much beyond childhood, but even if I were, I didn’t grasp the concept.

Similarly, because we had a bath at my parents’ house, I didn’t learn to properly shower. I didn’t know until a few years back that you’re supposed to use body wash when showering each time.

Other personal care tasks, I simply cannot do due to my physical limitations. I cannot clip my nails, for instance. I know some other blind people (presumably without physical disabilities) can, but other blind people I know go to the pedicurist for this.

2. Meal preparation. While in the training home, I tried for weeks to learn to put peanut butter or jelly on my bread without success. My mother can’t do it blindfolded either. My father can, but he assembles all his supplies around him in a very structured manner.

To be honest, I never had to prepare my breakfast or lunch before going into the training home, as we didn’t eat breakfast at my parents’ home and my lunch was always packaged by my mother (or I’d eat a sausage roll at the cafeteria).

There are probably ways I could prepare my own meals if I really need to. I mean, when living on my own, I just ate plain bread without toppings. However, I prefer my staff prepare it for me.

3. Cleaning. This is a difficult task for most blind people, but it can be done. I can dust my desk and table with minimal help if I’m reminded to do so. However, I can’t vacuum or mop the floors. I learned both, but with each house having a different way it’s set up, it’s very hard to find my way around it with a mop or vacuum cleaner.

What I struggle with most with respect to cleaning, is remembering how often each task needs to be done and actually organizing them. For example, in the training home, I’d clean the top of the doors each week despite no-one ever touching them. On the other hand, I’d procrastinate about changing my bed sheets, sometimes leaving them on for months.

4. Getting around. Ann mentions navigation for a reason: regardless of high-tech solutions to help people navigate, they still need to learn to use maps or to use public transportation. For me as a blind person, mobility was always more important, as it additionally involved safe white cane travel. I never mastered this, even with seven years of mobility training in special education and many more lessons once out of special ed. I only recently learned that more blind, neurodivergent people struggle with white cane usage.

Currently, I can for the most part move around inside the care home by myself, but I cannot at all get around outside without a sighted guide. My parents used to blame this on lack of motivation. While I am pretty sure this, as well as anxiety, does play a part, it is also about other things. Besides, lack of motivation is not the same as laziness. In my case, it feels as though the activity of independent travel overloads me cognitively to the point where I feel incapacitated.

I am assuming Ann’s son is “just” autistic, whereas I am multiply-disabled: autistic, blind and mildly physically impaired. However, with this article, I want to make it clear that there are many reasons a disabled teen or young adult might struggle with life skills and, for this reason, many different approaches to supporting them.

Keep Calm and Carry On Linking Sunday
loopyloulaura

22 thoughts on “Life Skills I Struggle With As a Multiply-Disabled Person

  1. I have to confess that, other than mobility and getting around, I’ve never thought much about how much harder all these skills that many of us take for granted are for a blind person. It’s good to be made aware of these things and to try and be more understanding as a result. I can imagine how getting around in your home is a lot easier than trying to cope with all the external activity and sensory overload that comes with getting around outside. #MMBC

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    1. I’m so glad I helped raise some awareness for you. Yes, getting around in my home is easier than outside, though this too is sometimes hard, for instance when people put objects in my path.

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  2. This has been interesting to read Astrid, thank you! I also read Ann’s blog post about this. Being blind clearly comes with many added complications, and I can only ever imagine what it would be like to live life blind. When it comes to other issues with life skills, I’ve realised that I have poor executive functioning, which affects many areas of my life, and makes many tasks more draining and time-consuming than for the ‘average’ person. Cooking and cleaning are two examples. But I’m still able enough to not be disabled, if you see what I mean. My level of difficulties are not hindering me from living life ‘normally’, they are just making it more difficult x #MMBC

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    1. Thank you for sharing your perspective. I definitely get you about executive dysfunction making tasks harder for you, but am so glad it isn’t to the point where you feel you’re disabled by it. I find it hard to explain how my disabilities intersect to cause my difficulties. I mean, the National Federation of the Blind, The United States’ largest consumer organization of the blind, has as its motto: “I can live the life I want; blindness doesn’t hold me back.” In other words, with proper training and opportunity, blind people can be as capable as sighted people. I however feel that my blindness does complicate my trainability related to my autism and so thankfully did the funding authority when approving my appeal on long-term care here in the Netherlands.

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  3. This is really interesting. I’ve never thought about any of this. Quite an eye openner. And good reminder that lived expereince is often (usually) very different to our own. Great post! #MischiefandMemories

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  4. I would imagine that just on its own cleaning, whether yourself or your surroundings would be difficult. How would you know what was dirty and when it became clean? One of those things that the rest of us take for granted and never think about. Thanks for sharing #KCACOLS

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    1. Thank you for your understanding comment. Yes, it’s true that without sight, it’s harder to know whether something’s dirty or not. That’s why in the training home, I got taught to clean my apartment really systematically. That way, you’re supposed to be able to do as well as sighted people, but I never managed it.

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  5. Astrid thank you for sharing this. It is always advised that we teach personal hygiene skills etc to young autistics and its really helpful to hear from your perspective about not getting the hints etc. It really highlights the needs for us parents to make sure important life skills are mastered and then transferred effectively into new environments. Executive functioning skills have always been something that I just do without thinking about it so I really have to think to work out how I am doing it when thinking about how to explain / teach / support my kids and others with these skills. Often one of the key differences with neurotypical and neurodiverse individuals. Thanks for sharing, I will have to take a look at Ann’s post too. #KCACOLS

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    1. Thank you so much for stopping by. I am so glad I was able to offer some insight. Yes, executive functioning difficulties are an important part of most neurodevelopmental disabilities.

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  6. I feel you with this as an autistic person myself somethings I am really good at regarding planning other things at cooking I get so overwhelmed especially with planning and understanding instructions x #kcacols

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    1. Oh yes, I get you about certain skills, some of which neurotypicals find more complex, coming easier to me than others. For instance, I often get weird comments, somtimes even from professionals, about why I struggle with personal hygiene or for example preparing my own breakfast but can write a blog. Thank you for sharing your experiences.

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  7. Thank you for this post Astrid. It gives a great insight into things that I would simply take for granted. My 6 year old is probably autistic (we are just awaiting assessment) and I am busy reading as much as I can about how I can best support her in making her way through this Neuro Typical world so this was extra specially timely for me. #MischiefandMemories

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    1. Thank you so much for commenting. I am so glad I was able to provide some insights that may help you as you navigate life with a probably-autistic child.

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