4 Tips for Teaching Life Skills at Home

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This post first appeared on Parents.com

Skills of daily living— like doing laundry, food prep and cooking, and self-care, to name a few— were things my 7-year-old autistic sonworked on for years in therapy. Despite the fact that he had rigorous programming with multiple steps for everything from how to wash his hands to how to prepare an apple for a snack, his gains were fairly slow. I think a large part of this was due to the rigid structure of the tasks—for example, he might miss a step, have to redo that step, and then grow frustrated at having to backtrack.

It was not until we took a year off therapy (through a series of unexpected life events), that we really started to see his interest in taking care of himself and his home increase dramatically. Here’s how we did it, and I think the same steps will help any child with special needs grow better at daily living skills.

Follow his or her interests.

My son has always loved coffee. Since he was a toddler, he’s stolen sips of my husband’s and my coffee, and he loves the smell and feel of unground beans. Slowly, this interest evolved into a desire to help with our morning coffee making. Now, every morning, he fills a pot with water and carries it to the stove. Then he helps me measure beans; we grind them together; we put them in the French press…and so on until the coffee is ready.

One reason I think he loves this ritual so much is because he’s genuinely interested in the smell, feel, touch, and taste of coffee. Following this interest has allowed us to practice many life skills—not that making coffee is something everyone needs to know, but measuring, following instructions, and other parts of the process translate across contexts.

Expand slowly—don’t push.

It’s important to have high expectations for kids with special needs, but it’s also important to let them develop in their own time. This is as true with teaching life skills as it is with everything else. So, certainly, it’s great to start something like potty training or teaching a child to brush his or her teeth at age 3, but realize that the child will do the skill independently when she or he is ready. That may take months or years. Be patient, and expand her life skills slowly.

Teach your child small skills—washing his hair, using a washcloth—and then add on to these over time. Patience wins the race here because it will save you and your child a lot of heartache and frustration.

Make it meaningul work.

One thing that we’ve found to be really important is to make the work my son does more than just busy work. We don’t practice sweeping, we actually sweep up messes. We don’t sort using sorting toys, we sort laundry. We don’t play with fake food, we actually make sandwiches. My son is quite literal-minded, so things like fake food were always frustrating, but the larger skill he was meant to learn—how to make a peanut butter and jelly sandwich, for instance—has always interested him. So, that’s the kind of work we do at home.

Give independent tasks eventually.

As he gets more comfortable with each skill, I slowly give my son more responsibility and independence. Instead of holding his hand while he loads the dishwasher, I now let him do it, one glass at a time. Because this is an organic move towards independence, rather than a forced march, we’ve even seen a lot of non-prompted, self-initiated skills in action. For example, if my son spills a glass of water, he grabs a rag to clean it up. Likewise, if he sees me doing laundry, he rushes over to help.

By following my son’s interests, working at his pace, giving him meaningful work, and allowing for independence, we’re saying to him: You can do this; the work you do matters to the running of our household; and you are an important member of our family.

Practicing daily living skills at home doesn’t have to be a chore (even when you’re doing chores!)— and it can be a great way to build a child with special need’s self-esteem, prepare him or her for future independent living, and make your household run more smoothly. Wins on all fronts!

Thoughts from an Autistic Parent Part 3: Ally Grace

Meet Ally Grace: Screen Shot 2016-02-04 at 8.10.54 PM

I got my autism diagnosis as an adult. I struggled a lot as a child and autism made so much sense when I read up in it. My 4 children have also been diagnosed with autism and my partner identifies as autistic. So, we are one happy autistic family. It is pretty wonderful to be living in this way with one another. We are an unschooling family. My children have never been to school at all. What this means for us is that my children have freedom to learn and live and be in the ways that suit them, and we are there (as parents) alongside them to help them with their pursuits and interests, and we provide opportunities that are non coerced. I have learned that this already radical notion is viewed as even more radical for autistic children. We already (as a society) don’t trust children to make good choices for themselves and tend to simply force them to follow the preferences of adults – and we trust autistic children even less. I think this is because we see them (socially speaking) as inherently in need of fixing, inherently damaged or incapable. So, it is really amazing for me to observe my kids in this kind of environment. It’s not often that autistic children are given that kind of life.

What are some of the challenges you face as an autistic parent?

The main challenges I face as an autistic parent are Internalized Ableism, and ableism from professionals who could yield power over me as a parent. Internalized Ableism for me, is having been treated as a damaged person and having grown up to believe that I was bad, that something was wrong with me. Of course, I know now that there is, and was, nothing wrong with me, I’m just autistic and function perfectly well as an autistic person. However, I believed for so long that there was something wrong with who I am, and I was treated that way since as early as my memory can go back to. And so there are a lot of lingering thoughts that follow me, and make me feel faulty when I act in autistic ways. This can get in the way of my life, because it is hard to feel shame for simple and automatic things that I do. Ableism from those in positions of power is a very big one too. Because I am a parent, people believing me incompetent or emotionally lacking, is dangerous in the sense that I could be assumed incapable of being a parent. And so, it feels very scary sometimes being an autistic parent, wondering whether one day my parenting will be seriously questioned due to discrimination and misunderstanding. I am always needing to choose between saying nothing so no one can discriminate, but then have my autistic ways misunderstood as something else (potentially something negative) and I am not able to then seek accommodations or support for being autistic – and disclosing that I am autistic, but then having people immediately suspicious that I am by default of being autistic, a poor parent. These are really nothing at all to do with autism itself and the way my brain works, but are all to do with perceptions and discriminatory attitudes toward autism.

What are some of the ways that being autistic helps you be a parent?

Well, I think that like all parents, my unique personal profile brings various benefits as well as challenges. For me, being autistic brings with it the ability to collate a lot of information in my memory. I am a great researcher, and I have loved to read since I learned how. I think that all the ways I parent my children, with the way I challenge that being autistic means innate deficit and the way I have challenged school education and also authoritative parenting methods – I think all of that was possible because of my ability to process lots of writing and lots of ideas. I am so grateful for that ability, and it has transformed the lives of my children. There is also the important fact that my children are autistic, and so having an autistic parent is very valuable. When I think of how Internalized Ableism feels, and when I remember how I was treated constantly as though there was something wrong with the very essence of me – these things really help me to steer away from those things, to help me to raise my children without passing on the shame that was given to me. I also think that being autistic has gifted me with the knowledge that you do not have to understand someone’s experiences or struggles to be compassionate and respectful, or to be a great parent. Autistics often grow up realizing that others don’t understand them, and getting mistreated as a result. But you shouldn’t need to understand to simply be kind, and I think my experience as being a part of a minority population of sorts, helped me to be a kind parent.

What do you want other parents to know about your family, yourself, or being an autistic parent?

I would love for other parents to question the common belief that being autistic means an inherent ‘something went wrong’, or ‘something is wrong’. That is so often the base assumption that underlies all further thought regarding autism and autistic people. Imagine a mindset where we DIDN’T think this way. This is how I live within my family unit every day, and the possibilities of this kind of acceptance are great to imagine. Often when I say this, people misunderstand and think I am expressing some kind of idea that life for my family and me is always perfect or ‘rainbows’ – but that isn’t what I am saying at all. Because we don’t view non-autistic people as inherently damaged, and we also don’t assume that means life is always perfect for them. The essence of what I invite by challenging the ‘something is wrong’ dialogue is to accept autistic people as a part of the diversity of human kind, without thinking being autistic means a kind of damage.

I know there’s a lot of negative things written about autistic parents, so how can we change that conversation?

Well, I think there is an assumed negative social vibe surrounding autism in itself – there is talk of pregnancy choices ‘causing’ autism, things like medications, vaccines, food, toxins. The language that describes autism is stuff like ‘epidemic’, ‘public health crisis’. It’s innately pathologised language; there is that base assumption that autistic people are damaged people and not capable of things we consider important – like love and emotions and connections to other people. So, really, to change the conversation involving autistic parents, we need to change the entire discourse surrounding autism. If we didn’t think autistic people were damaged, we wouldn’t t think anymore that they’d be poor parents would we? We’d simply see them the same way we see other parents. I also think that social assumptions about ‘good’ ways to connect and spend time play a part in this specific issue too. Because autistic parents may connect with their children in unique ways, and I believe that those ways should be respected. This does come down to respect for autism as an entity though.

What services might help autistic parents?

This is a tricky question, because of the power play regarding services for autistic parents. The possibility of having our children removed from our care, or of non-autistic people who don’t understand us interfering in the way we parent simply due to discrimination; is a big issue. So, I think any services would have to exist amidst a paradigm of neurodiversity, within a belief that being autistic is natural and okay and that doesn’t involve a need to be ‘fixed’. But one that also didn’t think that there were conditions to being accepted, and that support needs were perfectly okay. Like, while being accepted as our autistic selves, it’d need to be a full acceptance not just an acceptance when we seem ‘mostly normal’. I know that this support exists informally between autistic parents already – and I am involved in such networks already, mostly online – but formally, there would need to be a big thought shift in order for autistic parents to be supported respectfully. Especially autistic mothers, because I think autistic fathers in nuclear families have less expectations upon them socially (as fathers rather than mothers) and so being autistic as a father isn’t viewed with the same alarm that being an autistic mother can bring.

Is there anything else you’d like to add or share?

I think I would really love it if the experiences of autistic parents, and for me I am a parent raising autistic children also – I would love it if our experiences were allowed a niche. As it is, our experiences seem to be constantly lumped in with the experiences of non-autistic parents, and when that is the default assumption, we are going to be constantly seen as coming up short because we are so different in our approaches and ways. Among other autistic parents and among the experiences and stories of other autistic parents, I think our day-to-day lives would be able to exist much more strongly and would be able to be explained much more accurately.

 

Thoughts from an Autistic Parent Part 2: Melody Latimer

Meet Melody Latimer:

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I’m the mother to 3 children and have been married coming up on 11 years. My older two boys are both autistic. My oldest was diagnosed in 2007, and my youngest and I were both diagnosed in 2008. While I had had my suspicions about being autistic, I actually received the diagnosis through an unlikely source. We were involved in a child services case that had been taken to court. Through a court ordered evaluation of the entire family, I received my diagnosis. While it was a relief, the diagnosis didn’t help much in terms of the actual court case. The child services case and court proceedings is actually what got me interested in advocacy, especially for disabled parents.

 

What are some of the challenges you face as an autistic parent?

Other than what I spoke about above, which we haven’t had any issues with since, my biggest challenges come around sensory overstimulation and a struggle with keeping up with household responsibilities. As a stay at home mom, the general expectation is that I’d do all the cooking, cleaning, grocery shopping, etc. Truth is, that’s not how our household is set up. When I get overwhelmed or anxious, I often need complete silence which can be hard with 3 kids, no matter their neurology. Luckily my husband is very accommodating and is happy to take over parenting duties when he gets home if I need a break.

 

What are some of the ways that being autistic helps you be a parent?

I tend to be highly observant of my surroundings. So when the kids are around, I can often anticipate their needs before they request them. While that’s not something my older two appreciate, my 18 mo old daughter seems grateful. As well, when it comes to parenting autistic kids, it makes it easier to understand where they’re coming from. I often use my experiences to talk to them as well as their teachers and therapists.

 

 

What do you want other parents to know about your family, yourself, or being an autistic parent?

Honestly, a friend of mine put it best. “I don’t see you as an autistic parent, but as a friend, who has has autism and happens to have kids.” This isn’t the same as person-first junk, but an understanding that I’m a parent much like any other. I’m trying to parent my kids and adult to the best of my ability. Ability and energy are a constant struggle. I put as much as I can into taking care of my children first. Then followed by taking care of myself. Then finally taking care of everything else. Their care and safety are the most important thing to me. As they get older and can do more for themselves, I find I have more time for all the things I really struggled with.

 

 

I know there’s a lot of negative things written about autistic parents, so how can we change that conversation?

I think more needs to be done to show how autistic parents actually parent. Not just anecdotal stories, but actually do some case studies on families. That just hasn’t happened. With the majority of actual literature out there says we’re innately negligent, that is what services providers are going to perpetuate. The other thing I would love is for more autistic parents to come out to tell their story. I tried several years ago to create a website to have those stories told. In the end, it was a struggle to get most autistic parents to blog about their experiences. I have continued to use the site, but mainly to talk about my family.

 

 

What services might help autistic parents?

I really think home cleaning services, professional organizers and possibly during newborn days a night doula or nanny. While I know many parents could use all of these things, when you’re talking about finite amounts of energy to exhaust, things that can be outsourced can make a lot of difference.

 

 

Is there anything else you’d like to add or share?

I think one of the things really missing from both the parent autism community and the autistic community is a place for autistic parents. We’re kind of scattered to the wind. There are a few places here and there where you can find other autistic parents, but those places are usually well hidden for fear of discrimination. While the discrimination won’t change, I feel like there should be more safe places for autistic parents, whether in local communities or online. I can only imagine how much easier this article would be to write if you had a place to start from rather than going to a non-autistic parent to find participants.

 

Thoughts from an Autistic Parent Part 1: Carol Greenburg

Meet Carol Greenburg:

I got my diagnosis of Asperger’s syndrome when I was 44 years old, about two years after my son was diagnosed with ASD at 31/2. I never had any kind of speech delay, but my speech pattern has always been mannered. I was consistently bullied during my childhood, by other children and occasionally even by adults. for using “big words.” By contrast, spoken language is my son’s most obvious challenge, though it is clear to most people who know him that he understands almost everything said to him. Presuming competence and comprehension is a good plan for communicating with all autistics, but I think it is particularly important in dealing with my son. His problem-solving skills are impressive so he almost always finds a way to get across his meaning, with or without spoken or written words. This year, if he is willing, I’m hoping he and I can work together on learning to use AAC (Assistive Augmentative Communication) technology. Although his speech and writing improves daily, I want to respect all avenues he might need to communicate even more fully. For my part, like most autistics the slightest stress can cause me to lose some degree of spoken or written language I can easily access when I’m in my comfort zone. I often say I’m always one siren or squealing tire away from temporarily losing all of my language, which can be dangerous especially here in NYC. My point is, despite the vast difference between our day-to-day uses of communication, in an emergency, either one of us could end up in a similar situation, unable to express our most basic needs or understand the simplest instructions.

What are some of the challenges you face as an autistic parent?

Competing Needs. We both experience constant sensory input, light seems brighter, noises seem louder, details that non-autistics are likely to miss stand out to us, etc. Our reactions to that input are different, though. The input physically hurts my ears, eyes, etc. so sometimes I react by dulling it with sunglasses or headphones, sometimes by removing myself from environments that overwhelm me. His way of coping with increased sensory input is different from mine. He does sometimes indicate that he wants out of the environment, but rarely as automatically as I do. What he often needs to do is plant himself right in the middle of the action and investigate it until he understands it. So if there’s a noisy fan, I prioritize blocking out the sound. I cover both ears, duck my head, and turn toward the wall. He , by contrast, is likelier to partially cup one ear, and circle the fan peering at it’s components until he figures out exactly where the noise is coming from, vocally imitating the sound all the while. Once he integrates the input, he sometimes seems better able to withstand it than I can. So the challenge is, when we react to different needs with different coping mechanisms, which way of coping wins out? Do we leave the area, which frustrates him, or do we stay longer so he can investigate, which causes me pain that can impede my ability to protect us from strangers’ sometimes hostile reactions to what they interpret as our odd behavior. It’s hard to negotiate a solution in the moment.

What are some of the ways that being autistic helps you be a parent?

Bluntly put, I think I’m more likely to “get it” than a non-autistic parent. My son and I have different experiences of this world that isn’t designed for our brains, but I do know exactly how it feels to be penalized for violating a social convention I don’t understand. I believe we both resent all the rot about our alleged lack of empathy, as scientists are only beginning to study the “intense mind” theory we’ve instinctively understood all along. I get the drowning sensation of other people’s emotions washing over me in waves I cannot process in real time. Most importantly though, I can serve as a role model in a general and in a specific way. My son and I have always been and will always be autistic. Even if I bought into the all the clamour for “a cure”, which I emphatically do not, that’s not going to happen in either of our lifetimes. So not only does he see me as an autistic comfortable in my own skin generally, but he watches carefully as I model various coping mechanisms and self-advocacy techniques. He is, of course, free to adapt the ones that work for him and toss aside the rest, which he has already made abundantly clear to me.

What do you want other parents to know about your family, yourself, or being an autistic parent?

The obviousness of autism des not directly translate into an individual autistics’ level of need. My son’s autism is pretty obvious to anyone who has had any contact with autistics. Mine is largely invisible, which is part of why I wasn’t diagnosed until middle-age and why I’ve had no access to services I needed and still need. My son does have access to high-quality educational and medical services on the upside, but on the downside he’s still occasionally exposed to so-called experts who, however good their intentions may be, can do more harm than good with misguided interventions. What all families of autistics need to know is that a constant, but courteous level of vigilance and communication with autism professionals and autistics, will increase their autistic family members’ options.

I know there’s a lot of negative things written about autistic parents, so how can we change that conversation? 

If you go to my Twitter feed, @aspieadvocate, you’ll see in my bio that I call myself a Fangirl of @stevesilberman’s New York Times bestseller and Samuel Johnson Award winning masterpiece, NeuroTribes. Full disclosure, my family’s story is in it, and many autistics and parents I know are in discussed in it too. But beyond my usual self-aggrandizement, and fondness for the author and many friends leaping about in the pages, NeuroTribes up-ends everything most experts thought they knew about autism. Whoever you are, whether you’ve spent most of your life around autistics or think you’ve never met one, (In which case you are mistaken. You have.) this diligently researched and beautifully written book has already irrevocably changed the autism conversation. If you lack internet access, politely demand that your nearest library order several copies, as there will be a waiting list for eager readers. If you have internet access, the minute you finish NeuroTribes, visit the websites and social media outlets for autistic-run organizations such as Autistic Self- Advocacy Network, and Autism Women’s Network, and Thinking Person’s Guide to Autism (for which I am one of a small, but merry band of Neurodiverse editors) All of these organizations can point you toward a cornucopia of autistic writers, visual artists, and musicians.

What services might help autistic parents?

I’ll start by describing my own greatest struggle. Autism professionals might refer this current struggle as “difficulty generalizing.” I am a non-attorney special education advocate, helping parents get appropriate special education services for my kid and theirs. I thought my skills as an education advocate would translate easily to Medicaid advocacy when it came time to apply for Medicaid, a service my son needs now, and especially in the fast-approaching years of transition to adulthood. I was right about his need, but so very wrong about my ability to get it for him without support. Just as my son needs one-to-one instruction for his education and therefore attends as private school with a one-to-one teacher student ratio, I need one-to-one support getting and keeping Medicaid services. I’m light years from achieving that goal Now, imagine I weren’t a formally educated, financially privileged white woman: if I can’t get anywhere in the Medicaid system what chance have autistics of color, or LGBT autistics and their kids? What if English weren’t my first language, or I covered my head for religious reasons? The gulf between person-first social services rhetoric and actual services is horrifying, and unless the government delivers on promises already made and presidential candidates from both parties start answering specific questions with detailed plans about everyone’s access to services, that gulf will widen.