Autism & Independence

     In the post, Autism & The Curious Incident of the Dog in the Night Time, I started to talk about the independence young people seek, and that is no different for people on the autism spectrum.  
 
    Our son Caleb with autism is now 12, and he is wanting to be independent, but still needs so much support. We want to offer him more freedoms, but find this very difficult at times because his safety is a concern, as well as the fact that with independence comes heartache, failure, and struggles, and as parents we want to protect our kids from that.
 
    We are not the kind of parents to coddle, but we have realized that we are the kind of parents to micro-manage, for the sake of making life a little more stream-lined. For instance, if I’m baking, I really prefer to do it on my own. I like the order and tidiness in which I bake and prepare foods, and I like to have my own space, and work in my own time. I also prefer to do things myself like wash the dishes or sweep, because I can do it faster and better than the kids. I know you’re reading this and thinking, “duh? Of course you can do dishes and sweep better than a child!”, but the fact of the matter is, if I want my children to grow up and know how to do these things…...it’s gotta start with me teaching them!
 

   A big part of being successful independently, is having the confidence that you are capable of completing whatever job/task you’re doing. This is true for my neuro-typical kids, but especially for my son with autism. If I expect him to grow into adulthood with the basic skills to take care of himself, I’ve got to let him do some things on his own!
 
   Allowing independence to a child with special needs will look extremely different for each individual dealing with it because of the many aspects of autism there are to consider. For us, allowing liberties has looked simple to the outside eye, but for us, and for Caleb, these have been big stepping stones.

    In the past few years we've made an effort to create some independence by providing simple choices for him to make. For instance, we've allowed him the chance to choose his own clothes every day (we made this easier by cutting down on the amount of clothes he has to choose from, and also keeping the clothes he has fashionable and well fitting. We've also starting buy 2 types of gluten-free cereal so that on cereal breakfast day, he can choose which cereal he wants. We’ve also started letting him grab his own bowl, and the milk from the fridge. We also have started letting him pour his own cereal and milk. With the responsibility of getting your own bowl, cereal and milk, comes the natural jobs of putting all those things where they belong when you’re finished!
 
    These freedoms don’t sound like much, I know. But they’ve come slowly, and naturally based on what we thought he was ready to do. I used to take the extra time to get everyone’s bowls out, pour the cereal, and once the kids got dressed and got downstairs, I would pour the milk for them. I didn’t mind this “extra work” because I was used to it, and I was already in the kitchen getting lunches into backpacks and starting up the day.
 
    Honestly, I’m so stubborn about some things, and insisting on just doing it myself to make life “easier”, that I was stunting the self-ruling growth of my children. For me, something that has really helped is my 2 daughters. One is 8 years old (Abigail), and one is 7 years old (Keziah). Abigail naturally takes steps into maturity because of the fact that she doesn’t have autism, and can verbalize needs, wants, and desires more easily than Caleb.
 
    She’s really the one who started making my husband and I look at what freedoms we’d given Caleb, and the truth was, we’d hardly given him any!
 
    Abigail started asking if she could “help me” get breakfast ready by getting out the bowls & spoons, cereal & milk. Or by taking out the bread and toaster, or grabbing the peanut butter and honey, yogurt, etc. She was eager to help because she inherently knew what she was capable of, and was eager to test out her new skills. It got me thinking about Caleb and how we’d kept him from doing these sorts of things because, well, it was always just “easier” for us to do it. This feeling was perpetuated initially because given the chance, Caleb would dump cereal everywhere, or pour so much milk it overflowed onto him and he’d have to get re-dressed for the day. He’d glop peanut butter onto the floor, and somehow manage to get honey into one of his sisters’ hair. It was frustrating, but important steps were being made toward him being successful at breakfast. FYI, he still pours too much milk, but not to overflowing. As they say, there’s no use crying over spilled milk (or peanut butter on the floor, or honey in hair!)! The only thing to do was to clean up, and try again.
 
   Since Caleb “mastered” cereal, we’re now letting him try spreading peanut butter onto a banana, and have recently taught him how to cut an apple. This is something he often insisted on, but stopping to cut an apple (which is a fruit of choice in our house because it doesn’t need any special prep done to it!) wasn’t ever in my plans for the day. So, we finally taught him how to do it himself! We showed him several times how to hold the knife so that he didn’t accidentally cut his fingers off, and eventually, he got it. It bothers me that he sometimes leaves the hard “shell” that surrounds each seed from not cutting away the core properly, but I’m not eating the apple, so I had to learn to let it go (go ahead, sing the song from Disney’s Frozen…).
 
    If our goal with Caleb (or any of our kids!) is that he grow into an adult who is capable of taking care of (at least) his own daily needs, then it’s never to early to start working on it. I want to know that he can shower (we’re still working on this), get dressed, make himself something to eat, clean up after himself, and get out the door on his own. His independence is something that keeps coming back in conversation between my husband and I, and that keeps us reading, asking questions, and laying awake in bed at night hoping we’re setting Caleb up right.
 
 

​     Each day is different, so each day offers new chances to give or take away freedoms. We thought we’d give Caleb the job of filling our outdoor wood stove. He was given much instruction on it, and how it must be done safely and properly, and although he was always doing this job safely, he wasn’t ever doing it properly. The wood wouldn’t catch fire, and the temperature would slowly go down, leaving our house freezing cold, and my husband or I would end up outside trying to rebuild the fire after we realized it had gone completely out. So, we talked with Caleb and told him that he wasn’t ready for that job, and instead had him carry a few logs everyday over to the outdoor wood stove from the wood pile. He was capable of the manual labour involved, but not of the skill and understanding of fires to successfully fill the stove and have it catch. For the most part though, we try to build on each new strength and liberty he is finding. Part of doing this though is the give and take in jobs or tasks given. So, with the stove, we thought maybe he could do it, but after giving him a fair chance at doing it, it became clear he wasn’t ready for that job. But, instead of my husband or I just throwing our hands up in frustration and saying “forget it! I’ll just do this job!”, we re-thought the situation, and gave him a different job within the same job frame. We also gave him a new job altogether after the fire-building failure, and that is to feed the dog in the evening. So, we changed one job, and gave him another that he is very capable of.

    For a while last fall, Caleb kept going on about a push mower. I'm not at all sure why, to be honest, but our wonderful neighbour heard about this, so he gave Caleb a push mower! The neighbour had been given it as payment for a job, but he didn't need it, and hadn't used it in the years that he'd owned it. Caleb was over-the-moon excited! He'd get off the bus and immediately ask if he could cut the grass. The answer, of course, was yes! We were proud of him for really focusing, and he worked away in small patches everyday, and did a very good job! 
 
   We haven’t got this all figured out yet at all! I don’t think we ever will. Not giving up some of the jobs I was doing, and doing all the jobs myself was me hiding from the fact that Caleb needed to start doing more for himself in order to grow and gain confidence in who he was (and is) becoming as a young man. Sometimes letting him spread his wings is messy. Ok, it’s often messy, but it’s important.
 
   Whether you have a child with special needs or not, ask yourself “am I giving them enough of a chance to grow and mature?”. If you’re not sure where to start, ask your child! If they are special needs, and not verbal, a good place to start would be to check out the list below of age appropriate chores. Doing chores creates independence, and builds confidence. Remember (but don't lament) that your special needs child is likely not within their biological age range for chores. Caleb is in the 7-10 age range, even though he's almost 13. That's ok. Something is better than nothing when it comes to building independence. And you can't build if you don't start!

    There is a quote from a writer, Robert A. Heinlein, that says, “Do not handicap your children by making their lives easy”. This quote is so ironic here, as I am dealing with creating a life that is independent and fulfilling for my son who is “handicapped” (don’t get all upset over my use of the word! Handicap simply means that progress is slowed or difficult, or there is something acting as an impediment). Making his life “easy” though by doing everything for him will only act as a crutch as he gets older. He needs to learn, struggle, adapt and take on the challenges in his life so that he can live a confident life!  ​
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      My Mom told me a story about a young man with autism who relied heavily on his older sister to get him up in the morning, get his breakfast for him, pack his lunch, and get him on the bus for school. The father worked, and was up too early to be able to take on these tasks, so this sister became the one responsible for making sure her younger brother got off to school everyday. 

    However, it happened one day that the sister, who was in high school, had exams, and so she slept in because she had the day off school. Her brother didn't though. When the Dad came home later in the morning, he found his daughter sleeping, and his son gone.

    He woke up his daughter in a panic asking where the boy had gone! The sister realized she'd slept in, and had therefore forgotten to get her brother out the door for school. The Dad, not knowing where to start looking for his son, called the school to ask if they'd seen him at all.
 
    "Of course!" the school told him, "he's been here, like usual". The Dad and daughter couldn't believe it. This young man had gotten up in time, got his lunch packed, got himself breakfast, and caught the bus to school. All on his own. 

        Part of me goes, "ahhhhhh! He could have run away or been kidnapped!", but then that part of my brain quiets and I think, "man, that kid was far more capable than his Dad or sister knew!" It's not the Dad & sisters' "fault" at all. As caregivers to special needs individuals, we have a fierce dedication to life going well for them, but at what cost? What is the person missing out on because we're doing it all for them? 


      Step out. Have faith in the person you care for. Know that them becoming independent doesn't mean they don't need you, but that they need you more than ever to teach them. Just getting through life isn't enough. Don't we want our children to thrive, to feel confident and have purpose? Special needs or not, building independence is a life goal, some people reach that stage on their own naturally, and others need a boost. 

     Finding a balance between dependence and independence is hard, but it's an essential life skill that can't be ignored. So, start today, start right now! Look at the chore lists above, see what you gave give your child today to start them on the path of independence. ​
 
    I don't want it to sound like I'm preaching at you, I want to encourage you! Independence is so important for feelings of self-worth and builds confidence in our kids. Don't be afraid to give some things over to your special needs child and see what they can do. You may be surprised!