30 things a disabled loved one wants you to know as a parent or caregiver

Hi readers,

 Today, I wanted to talk to you all about disabled children, childhood, and adolescence, from the perspective of someone who is a disabled adult, and has disabled young people in their life. This is not meant to be a prescriptive post, nor specific to any one disability. Rather, my intention is to speak from my own experience, and provide all loved ones of disabled people insight into issues that their disabled loved one may be unable, or unsure of how to talk about with those who support them, but nevertheless wish those people to know. In this post, I will be using the first-person pronoun I, not because I am the definitive authority on disabled people, but rather, because I want you to feel like you are talking directly to a disabled individual, even if the disabled person in your life, is unable to speak to you themselves.

From my experience, so much of disabled life, especially in the early days, is so focused on survival, and gaining new skills, that sometimes our loved ones are unable, or can forget to look at the more nuanced details, of what it actually means to live. Doctors and other medical professionals often paint the most dire picture of what their loved one’s future will look like. This can lead to a spiral of anxiety, with an endless sea of seemingly unanswerable questions floating around in their heads. They often wonder what will my loved one’s future look like? Will my loved one have a social life? Will they be able to live independently etc.? While it would be wrong of me to promise that I can answer all of these questions, I’m hoping that with the tips, tricks, and examples I provide here, whatever your role is in your disabled person’s life, you will walk away with the feeling that it is possible for them to lead a good life. I decided to list around 30 things, that the disabled person in your life probably wants you to know, but maybe has never thought to tell you. Most of this is based on my own experience, both lived and peripheral. I know that I cannot speak for everyone living with a disability, or those who care for them. The goal of this post is to get you thinking about issues, starting conversations, and perhaps, changing the way you think about disability in general.

1. I have something of value to offer the world, even if that something is simple, like a smile, laugh, joyful noise, or awareness that my caregiver is with me. (Out of character, in my experience, people often forget that even individuals with complex medical issues have something to offer the world, and therefore, are quick to dismiss their needs for quality of life.)
2. Let me try things, figure out ways to play, and experience the world around me. (Out of character, in my experience, a lot of people are so focused on their loved one’s health issues that they can forget, at bottom, their kids, are kids, and people. If your loved one with a disability expresses a desire to try something, work together with them to figure out how that something might happen, or if it genuinely cannot, search out alternatives, or similar experiences. If your person has trouble communicating their needs and preferences, expose them to a bunch of different experiences and see which ones they like best.)
3. Self-advocacy is learned, and taught, not innate – learn everything you can about my disability, and communicate that knowledge to me in ways that I can understand, and share with others. (In my experience, many people surrounding people with disabilities feel like they can’t, or shouldn’t talk about disability with their loved one. In some cases, they may feel like, due to the nature of their loved one’s disability, they won’t be able to understand the information about it. You can talk to your disabled loved one, about their specific needs, such as teaching them how to perform skin checks, directing carers on how to assist them with medical equipment, or even something as simple as getting them to communicate what they would like to eat, or wear for the day. By taking these simple steps, you give them examples, and practice with, self – advocacy. As they age, you can have them increase their knowledge base. The more knowledge your child or loved one has, the better they will be able to advocate for themselves in the future, no matter their disability. Even those with profound disabilities, appreciate being able to communicate their wants and preferences. If your child, or young person, is unable to communicate verbally, through sign language, or with the aid of assistive technology, you might want to consider getting a planner, or datebook with relevant information about them, their likes and dislikes, and medical needs, and putting it in a prominent place, for people to consult, as they interact with your loved one. For people who communicate better through pictures, and are able to manipulate Velcro, a picture schedule, or picture book detailing their routines, could be a nice DIY option for independence.)
4. I want to have all kinds of friends, including those with disabilities. (This point really gets to the idea of community building. In my experience, it was really helpful to me, as a kid, and now as an adult, knowing that there are other people out in the world, who have disabilities. I was lucky enough to have this experience at a young age. However other friends of mine, were not able to interact with other disabled people until adulthood. In some cases, withholding access to the disability community may come from a place of caregivers, and parents, not knowing how to connect their disabled loved one with others like them, or maybe because they feel like they want their disabled loved one to have a “normal childhood.” Whatever the reason, ultimately, I think this does a disservice to disabled people, because when a parent, or caregiver chooses to go this route, it is very easy to feel like, from the disabled person’s point of view, that they are alone in what they are going through, and that there is no one else like them. If you are unsure of how to expose your disabled loved one to the disabled community, you might start by searching for things like, summer camps for disabled people, therapeutic recreation, or even your child’s specific disability, with the words community, or adults attached to it to start looking for resources that are community based.)
5. Just because you know me, does not mean that you understand everybody with a disability, and just because someone has a disability, doesn’t mean that we will automatically get along. (This is a misconception that many people supporting people with disabilities have, that just because they’ve met one person with a disability, and may have a pretty good idea of what that person needs, that they now have infinite knowledge about every disabled person. It’s important to remember that every disabled person is their own individual. Although community building is important like I just mentioned, it’s also important not to think that your disabled child or loved one is going to get along with every other disabled person they come into contact with. Whenever possible, caregivers, parents, and support people, should listen to the opinions of the disabled person they are interacting with directly, and respect their preferences for interaction, and social relationships.)
6. I have desires and preferences, even if I can’t always communicate them. (So much of the conversation around disability is around care needs, that it can be so easy for caregivers and other people within a disabled person circle, to forget that, they have things they like, and don’t like, just like everyone else. This can be especially challenging when the disabled person in your life has trouble with communication, but as their parent and/or caregiver, it’s up to you to observe their cues and take their preferences into account. I’m not saying to give the disabled person in your life whatever they want in the moment; we can’t always get what we want, but they deserve to be treated with dignity and respect.)
7. Having me in your life might mean redefining what success looks like for both of us, but my successes are no less valid. (Too often I see individuals who are supposed to be supporting the disabled person in their life focusing on the things that their disabled loved one, is unable to do, and seeing those as a lack of success, instead of focusing on the areas of strength for the disabled individual. I understand that parents especially, may have a preconceived notion of things that they wanted their child to be able to do before they were born, or experiences, that they wish they could have had with them, but in my experience, it’s better to put your energy towards celebrating what your disabled loved one achieves, what makes them happy, and what their dreams are, rather than your dreams for them.)
8. Diagnosis can give you useful information about me, but it does not tell you who I am as a person, or how necessarily, I will do in the future. (This is pretty self-explanatory, but I see a lot of caregivers and parents think that once they get a diagnosis, they now know everything about their disabled loved one, and unintentionally limit the possibilities their disabled loved one may have in the future, because of medical information that they are given. I am not saying ignore the features of your loved one’s diagnosis, just to keep in mind that diagnosis is not equal to prognosis, i.e. how your disabled loved one will do, or what they will accomplish in the future, that is often influenced by a variety of factors.
9. Education may look different for me, but with the proper supports I am able to learn something. (This point kind of goes back to the one I made earlier about redefining what success is, when you have a disabled person in your life, but often times I see parents, or primary caregivers, really stumbling with the concept of education, when it comes to the disabled person in their life. They either funnel them into special education classes, and subpar curriculum, because of their loved one’s medical issues, or go to the other extreme, and put their disabled loved one into too rigorous of a program, because they are trying to compensate for their loved one’s perceived inadequacy. The education problem is a messy one, but in general, I would say, focus on the goal of teaching whoever your disabled person is, that learning is fun. Play to their strengths to address weaker skills, for example, if you have a disabled person who knows everything there is to know about fire trucks, look at videos featuring firetrucks, for things like counting, color recognition, etc. You could even use this interest, as a jumping off point for teaching about emergencies, and what to do during them. Additionally, if your loved one loves marble runs, you can use that to teach things like problem-solving, visual-spatial awareness, and gross and fine motor coordination. As your disabled loved one ages, you will gain more information about their learning needs. From my experience, it is also important to think about, how a perceived learning difficulty, could actually be a problem accessing, or managing educational materials. For instance, if your disabled loved one is having trouble writing a paragraph, not because they don’t know what they want to say, but because they have limited time to do it in, consider asking for accommodations, like extended time, training on speech dictation software, etc. if your disabled loved one, is having problems writing that paragraph, due to anxiety, or because they are having trouble organizing their main ideas and supporting points, maybe consider having them talk to you about the paragraph before they sit down to write, and creating an outline. For those in higher education, they can request copies of their teacher’s notes, enlarged class materials, seating arrangements, break requests, and extra time on assignments. It’s important to note, that some colleges and universities, are better at providing disability accommodations than others. When looking for colleges, if that is a desire of your disabled loved one, you can search words like best colleges for people with physical disabilities, or alternatively, best colleges for students with learning disabilities. In my experience, it helps if you can keep your loved one’s educational options as open as you can, for as long as you can. It can be a bit of a Goldilocks and the three Bears type of scenario, but know that you, as a caregiver, and they, as a disabled student, have rights. IEP’s, 504’s, or consulting your school’s office for disability services can help on the legal end of things. Also consider a variety of schooling structures and options, such as private, or independent schools, hybrid learning, where your learner spends time in a traditional classroom, but can also engage in schooling virtually from home, vocational or apprenticeship programs, for those who have decided on a trade or profession, full or part-time schooling options –, usually for this, you will need to talk to your school district, and you may need to provide additional documentation of the nature of your disabled person’s learning needs. If you are outside of the US, and looking for educational resources for your disabled loved one, you can try googling educational resources for people with disabilities followed by your country name, province, or postal address.)
10. I want to communicate, I just may do it in a different way than you are used to. (I see so many loved ones of disabled people fixated on the idea that a disabled person has to communicate orally, in order to be of value. As a member of the disabled community, I have friends who communicate using a variety of assistive technologies, some even in three languages. If you have concerns about your loved one’s communication, talk to a speech pathologist, school professionals, or members of the community about alternative communication strategies. Even if you’re disabled loved one is nonspeaking, I can say from my experience, that they have some way of communicating with you, even if it is hard for you to pick up on. This communication can take a variety of unexpected forms, such as body language, crying, or other nonverbal cues. As a person supporting a disabled person, strive to be on the lookout for communication efforts the disabled person in your life is putting forth. While helping your disabled loved one acquire additional communication strategies is an admirable goal, be careful not to prize one form of communication over another.)
11. Getting access to care, or other resources for me, is not going to make me think that you don’t love me. (In my experience, many parents or caregivers believe, that if they seek out services for the disabled loved one in their life, they are somehow admitting that they are not of value to their disabled loved one, or showing them a lack of love, by not being able to provide all the care the disabled person in their life needs, as a one-person Army. This is simply not true. By accessing community-based resources, you as a parent, or loved one, are giving yourself a chance to develop a relationship with your loved one, outside of their need for care. This allows you, in turn, to have more energy for resource gathering, and thinking about what the future needs of your disabled loved one might look like, as well as increasing your ability to pay attention to nondisabled friends, or family members you may have. Also, it gives the disabled person in your life, the opportunity to think about what care arrangements will work for them. Furthermore, it’s worthy to note that not all disabled people want to be exclusively reliant on their loved ones for personal care. In some cases, some disabled people may be fine with having care based within their families, others may be comfortable with romantic partners providing care, and still others, like myself, prefer to cultivate working relationships with people outside of the family, to avoid things like caregiver burnout, and uneven power dynamics. Additionally, it is worth noting, that many states, here in the US, will not provide personal care and support services for your disabled loved one into adulthood, unless you can demonstrate, a pattern of them needing such care in the past. If you are unsure of how to get access to care where you live, a good place to start, in my opinion, is coordinating with your loved one’s existing providers. Be sure to stress the type of care that you are looking for, such as home-based, or community-based services. For older children, and young adults, you can ask specifically about transitional services, to get them prepared for leaving the pediatric medical system, and entering the adult one. Additionally, you can check out things like medical case management, and service coordination for your loved one through their insurance company, research disability friendly organizations, and lean on other parts of your network, including faith-based organizations who have experience with working with people with disabilities. You can consider attending disability centric events, such as disability pride festivals, or disability expos in your area, to gain a better idea of what resources are available for your loved one. Lastly, you can do a search for your child’s disability name, followed by the words, adult services, or community-based resources/community led resources to find resources run by, and based in, the community. If you are outside of the US reading this, you can search for disability resources followed by the name of your province, country, or geographical area.)
12. Be prepared to deal with Difficult Questions and big feelings from me, surrounding my disability. Answer my questions openly and honestly when difficulties arise. (Many disabled people grapple at some point in their lives with questions surrounding their disability, one of the most common questions in my experience that disabled people may ask their loved ones, as children and teenagers, is, why am I different? In my experience, it is best to answer these questions with factual information which is age-appropriate, about your loved one’s disability. Another excellent strategy, is to remind them, that differences, and diversity, are actually good from a biological perspective. You can also highlight the things that you value about them. Above all else, use these questions, not as a way to judge your loved one, for having them, but as a starting point for helping them to build positive self-image, and perception of disability. If your loved one’s questions are concerning to you as a caregiver, this could also be a way to start conversations about the importance of seeking help from mental health professionals. Always pose this as an option, rather than a requirement for your disabled loved one.)
13. Disability is a full-time job, as my parent or caregiver, I will need you, to help me find a worklife balance. (As a disabled individual, your loved one may often feel overwhelmed by the amount of work they have to put into seemingly ordinary things. Furthermore, they may witness you advocating for them and realize that you are putting a lot of additional work into their future, and what it is going to look like for them, and feel worried about it. For this reason, in my experience, it is important that you carve out opportunities for them not to have to worry about health issues all the time, and just have fun. This can be something as simple as scheduling a family game night, or engaging in a specific activity you know they enjoy, maybe even playing hooky from therapy, or doctor’s appointments, when the appointment can wait. For teenagers and disabled adults, also remind them that not everything has to get done at once, and that they are allowed to use their social resources outside of the family, to engage in activities that have nothing to do with disability.)
14. When considering any treatment protocols, medical interventions, educational plan, or any other procedure that is going to affect my life, please make me a part of the conversation. (This point is a little complicated, so bear with me. From my experience, within the disabled community, I have seen disabled individuals be subject to medical treatment, without their direct consent. I was lucky enough never to have this happen to me. From a very young age, my mother explained to me, in language that I could understand, why a procedure, or protocol was being implemented, what the risks of that procedure were, and as I got older, would allow me to voice, whether or not I thought the procedure would improve my quality of life. Whenever possible, in my experience, disabled people should have the power to be a part of conversations about decisions, procedures, and treatment protocols, that will affect their life. Providing information about the risks and benefits of the procedures in question, in language that your disabled loved one can understand, is vital in fostering a culture of informed consent. If your loved one, is truly unable to consent to something, you as a caregiver, must ask questions about any and all procedures. I know this can be a daunting task, especially for those of you who are not versed in medical language, but you can ask things like, by consenting to this procedure what will my loved one gain, what are the risks and benefits associated with this protocol, what are the potential adverse side effects of this procedure, and will there be follow up procedures needed to maintain the original procedures affects? Additionally, you can ask yourself, will this procedure or protocol inhibit or limit the skills my disabled loved one already possesses, do they have enough stamina bandwidth to handle the pain and the learning curve associated with this treatment protocol, or procedure? Are there any less invasive options, or options that will achieve the same goal that I’ve not considered? Is the benefit of this procedure one that will ultimately enhance my loved one’s quality-of-life, or is its main purpose to ensure that my life, as their caregiver, is made easier? I know all of these are difficult questions, but by answering them, in my experience, they help to ensure that, you are gathering as much knowledge as you can about a procedure or protocol before making medical decisions for your loved one.)
15. Whenever I gain a new skill, it is still worth celebrating. (What I mean by this, is that it doesn’t matter whether your loved one learns to use the toilet at two years old or 20. From my perspective, them learning to use the toilet at any age, is a major accomplishment. In my experience, there is no time limit on skill acquisition. Someone’s timeframe for learning a new skill, should not be a measure of their worth. Furthermore, in my experience, a caregiver should focus on celebrating the victory in and of itself, not how long it took their loved one to reach that goal. I realize that, society may place arbitrary barriers up for individuals who don’t achieve their developmental milestones in the typical timeframe, and I am not saying not to support your loved one in meeting life skill goals that will allow them to move more easily through the world; I am simply encouraging you, as their caregiver, to celebrate their victories. In short, in my experience, developmental milestones are best seen as useful signposts, not gold standards for worth.)
16. As my caregiver, support person, or someone who loves me, you are allowed to have your own feelings around my disability. However, please manage those feelings in a healthy way, which does not impact my quality of life. (In my experience some parents, caregivers, or loved ones, may struggle with the fact that their loved one is disabled, and the extra responsibilities this comes with. From my perspective, you are entitled to feelings of frustration if that is genuinely what you are going through, but it is important to realize that you are now part of someone’s support system, and, in order to fulfill that role, you may need to look at how you perceive disability, and the root cause of your frustration. In my experience, many caregivers are frustrated simply because they feel overwhelmed with balancing present needs, with future obligations. They may also feel that they simply do not have enough hours in the day to deal with medications, medical devices, and other extraneous baggage that caring for a disabled loved one comes with. Once you identify the cause of your frustration, you can start to deal with it, and become a better caregiver, supporter, and ally for your loved one. If the frustration is coming from the feeling of having no one to help you with daily tasks, consider talking to your loved one’s medical providers about steps to acquire additional caregivers in your household. Talk to other community members about resources related to specific issues you have. This way you’re not having to reinvent the wheel, to try and get the support you need for dealing with specific issues. Additionally, if you are dealing with grief, over things that your loved one is unable to do for themselves, it might be helpful to reframe this, and think about putting your energy towards societal systems, that limit the support available to you and your family, rather than targeting the disabled person themselves. Furthermore, as I have said, throughout this post, focusing on what your loved one is able to do, or aspects of their personality that bring joy to your life, does not make the feelings of grief go away, but it can balance those feelings out. Lastly, reach out to people, and let them know that you are struggling, and why. If needed, seek things like parental, or caregiver support groups, as well as individual, or family therapy. If your disabled loved one, is in immediate danger because of your emotions, contact their support coordinator, or social worker and ask for emergency respite care. This last option is a last resort, because it can have long-lasting consequences that affect your disabled loved one. I know this last point is very heavy, and scary to think about, but letting your emotions cause damage to your loved one, up and to filicide, is never a good answer.)
18. Mild-to-moderate frustration is okay for me to feel, but it never should be pushed to breaking point. (From my experience, your disabled loved one may find certain parts of their life frustrating, especially when therapies, new medical equipment, or learning a new skill is involved. Everyone, from my perspective, regardless of ability or medical status, feels frustration. This feeling can actually be useful, in some cases, to act as motivation, and teach problem-solving, and advocacy skills. However especially when your disabled loved one is young, it is up to you to monitor their frustration level, and often times, decide whether it is toxic. This is a very tricky proposition, but here are some suggestions, from my experience, to help with the process. You can ask yourself questions like, how long has my disabled loved one been dealing with frustration, if it’s going on for days, weeks, months or hours, it may be time to take a step back, offer your disabled loved one a break, or possibly consider halting the therapy. Is my disabled loved one’s level of frustration such, that it can be mitigated with breaks, or other distractions? I will use stretching as an example for this. Many people with my disability, cerebral palsy, require stretching to maintain range of motion. This can be incredibly frustrating, and uncomfortable, especially for a child, who does not know why they need to be stretched. When I was little, my mother would mitigate this frustration, by singing, playing games, and as I got older, explaining the difference between discomfort, and pain. She would also explain to me the benefits of stretching. If your loved one’s frustration can be mitigated by these types of distractions, or explanations, from my perspective, their frustration is probably at an acceptable level. Another question you can ask yourself as a caregiver, is, is the frustration my loved one feels over this particular activity, impacting their self-worth? If you’re disabled loved one typically is happy with their life, but since starting a therapy has begun to view themselves, as dumb or defective, or not good at X, their frustration level, from my experience, is probably edging towards the danger zone. Additionally, you can be on the lookout for changes in physical things like: sleeping patterns, bathrooming issues/incontinence, lack of appetite, or refusal of food excessive sleepiness, nightmares, and withdrawing from pleasurable activities. If your loved one is exhibiting any of these changes, or any other changes you find disturbing, or that are not consistent with how they’ve expressed frustration in the past, in my experience, it is probably time to reevaluate the presence of the thing which is causing them that much frustration. Lastly, if frustration is crossing the boundary into physical pain, you as a parent, or caregiver, have a duty to your disabled loved one, to stop the activity. If your loved one is able to communicate verbally, another valuable strategy for gaging their frustration level is to ask them why they are feeling frustrated, and how it is affecting them. When they are in a calm state, you could also try talking to them about how you also experience frustration in your life. Additionally, providing them with outlets to deal with their frustration in a healthy way, such as walks, scheduled breaks, additional sensory input and pleasurable activities to do after the frustration has been introduced, can be a great way to help your loved one manage the feeling.)
19. Teach me multiple definitions of independence. (What I mean by this is that your disabled loved one is often surrounded with the idea that to be truly independent they have to do things exactly as a nondisabled person would do them, or as close to typically as possible to be functional. This can also look like, “independence means being able to do this thing by yourself.” From my perspective, both of these assumptions are fundamentally damaging to your disabled loved one. As a caregiver, you will have a remarkable opportunity to teach them that independence is multidimensional. For instance, you could talk about how we all go to different places to get the help that we need. As your disabled loved one ages, you may introduce the concept of task delegation, and even computer-based research, for searching out places that they can go to get the help they need, or for understanding of who they need to go to, to get assistance. If you’re disabled loved one is dealing primarily with a physical disability, you can give them practice with this by asking them to describe to you how to complete a physical task they need assistance with. It helps if this is a physical task that they are confident in describing, at least for the first time you try this strategy. If they stumble, be patient, and if needed take a step back from the task at hand and go through the steps for its completion one at a time. If your loved one is dealing with a cognitive disability, you can describe the steps to the task as you help them complete it, write the steps down into routines and charts, and go over those with your loved one, and gradually give them the responsibility of reading out the chart to new workers or caregivers. It’s worthy to note here, that breaking down steps does not have to be verbally based, this technique can be used with picture-based communication, or assistive technology. For instance, let’s say you are trying to help your loved one breakdown the steps of getting their bag ready for school. You can take a picture of them going to the place where the bag is kept, another picture of them taking it back to the table, another picture of the bag being opened, etc. I find that a helpful aid in this is to actually take pictures of your loved one, instead of using stock photos, but it’s really up to you.)
20. Teach me how to respond effectively to bullies, people’s offensive questions about my disability, and that I do not have to answer every question that is put to me, by every stranger I come into contact with. (As a disabled adult, I can tell you, from my experience, bullying, and rude questions about a person’s disability, often start early. Make sure that your disabled loved one is fully equipped to deal with this; you can use techniques like role-playing games, where you are the person or stranger asking in inappropriate question. Be sure to preface this by introducing the technique as a game, by saying something like, when people are mean to you, you can get them to stop being mean. Once you’ve established that your loved one has power when these situations arise, you can then give them a general overview of what a bully is, and the possible motivation for a bully’s behavior. For example, you can say, a bully is a person who picks on other people, or who doesn’t treat the people around them very nicely. Sometimes they do this because they don’t understand something, sometimes they do this because they are hurting, and sometimes they do this because it makes them feel good. It’s important to stress whatever the reason for bullying, it is not okay. Then explain again that the game is designed to help them get practice in stopping bullies. Here is an example of the dialogue you might have.
21.  Hey, what’s wrong with you?
22. Nothing, I have a disability, that just means that I do things a little bit differently.
23.  You can customize the game with questions and responses that suit your disabled loved ones bullying situation the best. When you first play this type of game, you may have to offer your loved one scripted responses. Additionally, you can use it as an opportunity for them to practice saying something like, you know I don’t want to answer that question. Once they have a good grip of what a bully is, you can talk about terms like discrimination and how they relate to bullying. For instance, you can say, when you are unable to get into a place because there is no ramp there, or when people assume that you can’t do something just because you have a disability, that is called discrimination. Stress to them that this is another form of bullying, and that there are laws, rules for everyone that can help stop this. For older children, you can introduce the concept of ableism, as a form of discrimination, specifically directed towards disabled people. Specify that this form of discrimination and bullying can look like a variety of things, such as assumptions that able-bodied people make about people with disabilities, not considering access needs and demonstrating dislike towards people, because, and simply due to the fact, that they are disabled. Depending on the needs of your loved one, you can ask them, to pinpoint examples of discrimination and ableism they have experienced in their own lives. Lastly in my experience, it is also important, to let your loved one know that they can talk to you, about bullying when it happens, and or uncomfortable questions they were asked by someone. If your loved one is unable to defend themselves verbally, or communicate with you when bullying happens, enlist the help of their support team, including caregivers, and siblings to call out bullying, when directed towards the disabled person. If bullying is happening at school, camps, or other services your loved one accesses, as a caregiver, you are within your rights to access anti-bullying policies for these organizations. Additionally, organizations like the disability rights network, can give you further legal information to help you know your legal rights, when combating discrimination and ableism. If bullying takes the form of exclusion, and is impacting your loved one’s ability to socialize, it might be helpful to seek out alternative environments for them to socialize in, such as disability centered organizations, or programs. If your disabled loved one is unable to tell you when they are experiencing bullying difficulties, investing in monitoring systems, or nanny cams could be an option. If you’re looking for something a little less invasive, equipping your loved one with a communication book, where caregivers and staff members can answer specific questions about your loved one’s day, and any changes in their behavior, could be a great low-cost option, to make sure you are kept in the loop about what’s happening with your loved one. A communication book can be made from a simple composition book, with pre-listed questions inside.)
24. My disability does not make me inherently a good, or bad person; be mindful of the language you use when describing me to others. (In my experience, I often see well-meaning people characterize their disabled loved one as “special, a gift from God, or a variety of other euphemisms, that are designed to characterize them as especially good, or brave, simply because they have a disability. While these are well-intentioned, language like this can put a lot of pressure on your disabled loved one to always be happy, or unintentionally minimize normal negative emotions, that are a part of the human experience. Personally, I also feel like everyone, regardless of their ability status, should have the opportunity to decide what type of person they want to be. Nobody likes miserable people, but people should have the opportunity to decide whether or not they are miserable. I know this can be tricky when your disabled loved one faces a lot of discrimination, or isolation, from the rest of society. It is natural, from my perspective, for a caregiver, or parent, to want their disabled loved one to be loved by society as much as they love them. However, in my experience, not thinking about the terms we use, and the impact they have on society’s view of disability can be detrimental. Sadly, I’ve also seen the very people that are supposed to support people with disabilities, use pejorative terms to describe them, effectively casting them as bad people, solely because of their disability or difference. From my experience, there is a way to avoid both of these extremes. First off, if it’s within your loved one’s understanding, remind them that their disability is part of them, but not all of them. Secondly, when describing your disabled loved one to others, you can give them factual information about your loved one’s diagnosis, and what it means for them, or use neutral language that has nothing to do with your loved one’s personality. A term popularly used within the neuro- diverse community, which from my perspective, could be applied more broadly to the disabled community, is, “a high support needs individual versus a low support needs individual.” These terms bring into focus the level of support someone needs, rather than what that level of need says about them. Ultimately, the language you use to describe your loved one, is a conversation between you and them, when possible, and is often determined by a variety of factors. This tip is designed to start you thinking about how the language we use has an impact on those it’s being used for, and other’s perceptions of them.
25. Explain to me, in a way I can understand, about bodily autonomy, body boundaries, and consent. (I know this is a sticky subject for many within the disabled community. Some may feel that due to the nature of their loved one’s disability, they will never be able to understand boundaries for themselves, let alone why they are important to others. However, I see this form of education, as a safety issue for disabled people. You can explain that everyone has a body, and that their body belongs to them. From there, you can talk about how when something does not feel right to your loved one’s body, they are allowed to say something about it. A good resource even for those with significant developmental differences, is the board book yes, no, a first conversation about consent. This book is originally designed for very young children who are developing in a typical way, I would say between 3 to 7 years old, but it does a great job of explaining the concept of consent, that everybody has the right to say yes, or no, when it comes to making choices about their body, and that others are required to respect those choices. It does not talk directly about the biological facts of sex. Rather, it focuses on concepts like bodily autonomy, decision-making skills, withdrawal of consent in playdate scenarios, and how to get grown-ups to help you enforce your no’s with other people. It also has a really nice section on why grown-ups may make choices for us about our bodies that we might disagree with, but that are nevertheless good choices, because they help to keep us safe. If you’re disabled loved one has slightly more cognition capacity, and is a fan of YouTube videos, amazed.org is a wonderful website, encouraging kids and teens of all types, to learn about healthy relationships, romance, and sex in age-appropriate ways. If your loved one is at a developmental or physical stage where hormones and sexual needs are coming into play, there are specific resources geared towards sexual education for people with disabilities. In particularly, podcasts like disability after dark, books like sex and disability, and organization specializing in sex education and autism are great places to gather more information about your loved ones changing sexual needs. It’s important to note that while some disabled people may identify as asexual, or experience sexual maturity differently, assuming that they will never have questions about sex, is fundamentally ablest. If you’re disabled loved one has a variety of difficulties that make it hard for them to understand things like boundaries and consent, and or cope with the physical changes of puberty, going to a specialist in adolescent medicine who works with people with a variety of disabilities, can also be a starting point in navigating this challenge. If your loved one is dealing primarily with a physical disability, you can steer them towards sexual guidebooks that focus on physical disabilities and finding pleasure. No matter what resources you use to talk about boundaries, consent, bodies, and eventually sex, make it clear that you are a safe space for your loved one to talk about these issues with. If you, yourself, are uncomfortable talking about sex, consent, and body boundaries, as general concepts, offer your loved one additional outlets, such as professionals, or other disabled community members, who have tackled these issues for themselves. I know this is largely still a taboo subject in the disabled community, but trust me, talking about our bodies, and consent, allows us to make better choices about what works for us, and guard against abuse, or being unintentional perpetrators of abuse. I’m not saying to talk about sex with a four-year-old child, but I do think, talking about having power over your body, and your body belonging to you, is an age-appropriate concept, no matter how old you are, or your disability status.)
26. Insurance companies are not like sexual partners – if the service I need has been denied, no, does not always mean no. (Many times, governmental organizations and service providers will deny a service because you are not asking for it in the right way. In addition, many of these organizations are overworked, so, will look for any way to get you, and your loved one off of their caseload. Sometimes, getting a service might require asking for it in a different way, partnering with other service providers, and filling out additional paperwork, to go through lengthy appeals processes. This tip is intended to remind caregivers and parents that they should rarely take no, as a definitive answer, when it comes to acquiring services for their loved one. If you are ever unsure about appeals processes, you are within your legal right to ask what the process is, and request assistance filling out any needed paperwork. If you are looking to appeal a decision made by your insurance company, you can call them directly, by looking for a member services number, usually located on the back of your loved one’s insurance card. If the service you are looking for is provided by an auxiliary organization, look up the name of the organization, followed by the words customer service number, or appeals process, to get further information on how to appeal a denial of service. If all else fails, you can contact disability rights organizations, to get further legal information, and potential legal aid for you and your loved one.)
27. Start planning for when you are no longer able to care for me early. A.k.a. most disabled children grow into adults. (In my experience so many parents and caregivers are overwhelmed by getting their loved ones the services they need now, that they may not look into things like housing, and caregiving outside of the family, until their loved one is in desperate need of it, because they can no longer provide it. Because of the wait times to get access to things like assistive housing, the changes in personal care from pediatric to adult services, and other state and federal bureaucracy, the sooner you are able to get these resource processes underway the better, in my experience. This goes back to my earlier point about how getting services for your disabled loved one is not about a lack of love, or saying that you are giving up on them. I find it helpful to reframe difficult emotions around this process, as you taking a proactive role as a parent, or a caregiver, to create for your loved one a network of support. A good first place to start in all of this, is researching waiver services for disabled people, followed by your state name. You can also search things like independent living, or supported living for disabled individuals, followed by your state’s name. If a program looks good to you, but requires you to be signed up for another service, see what the steps are for getting signed up for that service. You can also contact your loved one’s service coordinator, or ask your child’s doctor about connecting you with service coordination or transitional services. Another good option to gather resources is to contact other members of the disabled community within your state, consult with other parents and caregivers who use similar organizations as you to help their loved ones, contact school special education departments, etc. If you are outside of the US, you can search things such as transitional services for disabled people followed by your country or geographical area.)
28. Keep records of everything, and as I grow, make sure I have access to them. (In my experience as a disabled individual, organizations that are set up to help people with disabilities run on the lifeblood of paperwork. When your disabled loved one is a minor, you will largely be responsible for this paperwork hoard, but as your disabled loved one ages, they may be able to take on some of the responsibility associated with it. In my experience, it can be a good idea to start filling out forms with your disabled loved one, so they can get an idea of the process needed for accessing certain things that require renewals. Another helpful strategy is to organize paperwork by date, including year, and any additional information, like service provider, service requested, services denied etc. Even if your loved one is not capable of filling out the paperwork on their own, their paperwork and medical records should be accessible to not only you, but at least one other person that you trust, to help them manage these logistics. In my experience, this strategy helps in the case of a primary caregiver becoming incapacitated. Lastly, when in doubt, do not throw it out. You never know when that record of an ER visit or a developmental milestone missed will come in handy. If you’re disabled loved one is able to comprehend what the paperwork is for, after an explanation, but has trouble physically filling out forms, remind them that they can request assistance via their service coordinator, or the agency providing the service, and requiring them to fill out forms.)
29. My energy will most likely be on a budget, as my parent, or caregiver, please help me learn how to allocate it. As I get older, and can manage my own needs, respect that allocation. (This goes hand-in-hand with what I mentioned earlier about finding a worklife balance. The disabled individual in your life may be able to complete a task, but the completion of that task may leave them feeling drained, or take away from other activities they need to do in their life. For myself, an example of this is dressing the top half of my body. Do I probably, with a lot of work and effort, have the capability to struggle into a T-shirt in the morning? Yes. Is it personally worth it to me when I could be using that 20 minutes to call a friend, make a doctor’s appointment, or write out call notes for my volunteer job? No. When your disabled loved one is a minor, you as a parent, or caregiver, may have to make these decisions in the early days. Please understand that this is not saying that working in therapy with your child on acquiring new skills should not be done, but rather, it is about assessing where you want them to spend their energy, and time. As they get older, from my experience, you may have different perspectives on these issues. If your disabled loved one is asking you for help with a skill they’ve already mastered, or you know they know how to do, instead of flat out denying them, you could try asking a question like, I hear what you’re saying, is this a time related or energy related issue, or are you just frustrated with this skill in general? If you’re disabled loved one is unable to communicate with you what the motivation behind them wanting you to complete a task for them is, try to look for nonverbal cues, such as tiredness changes in body posture/movements, or any other changes in behavior, that might indicate that they are running low on energy. If you’re disabled loved one is fully capable of communicating with you, respect their allocation of resources whenever possible. If you have differing perspectives, and wish for your loved one to work on a skill, you can offer compromise. For example, let’s work on this for 20 minutes and then you can have a break, or I think you already have the skills to do this, why don’t you try it by yourself first, and then if you get stuck, I will be here to help. The goal here is to create a dialogue with your disabled loved one, not automatically shut them down. Conversely, if you’re disabled loved one is wanting to try out a skill because they know they can do it themselves, but you are concerned about the timeframe, or level of energy expended, you can say something like, I am so proud of you for wanting to do this by yourself, and you can definitely practice it when we have more time, but for right now I am going to help you with that so we can x. In this way, you are acknowledging your loved one’s desires, and praising them for their effort, but explaining why you need to take over. Additionally, in this kind of scenario, you can give your loved one a choice. This can be accomplished by saying something like, if you spend X amount of time doing this task that you want to do, you may not have time to do this other task you want to do. This gives your loved one a better sense of time, and how long it will take to actually do something. Depending on your loved one’s disability, they may really struggle with this concept. That’s okay, remember that time management is a complex skill for anyone to learn, disability just adds more layers to it, in my experience.)
30. 25 if I never gain a certain skill, that does not diminish my worth as a human. (What I’m trying to say here is that, if your loved one never learns to walk, for example, they are no less valuable than someone who does. While gaining certain skills can help mitigate challenges, and have certain health benefits, like higher bone density, as a result of being able to weight bear, be mindful that these health benefits should never be equated with your loved one’s value in your life, or as a human.
31. Networking with other parents, caregivers, and disabled people is fine, to gather resources or gain insights, but it is unhelpful to forget that I am my own person, and use other people, even those with the same disability, as a template for what I should, or shouldn’t be doing. (In my experience, it can be all too easy for well-intentioned parents, and caregivers, to compare their disabled loved one to others with the same disability. While introducing your loved one to the disabled community, from my perspective, is a really healthy thing to do, comparison is not. Every disabled individual is unique, in my experience, and even those with the same diagnosis, can face unique challenges, and have unique strengths, that deserve to be acknowledged individually. Although it might be helpful to ask another parent, or caregiver, how they deal with a certain challenge that their loved one faces, from my perspective, it is best to avoid comparing your loved one to someone else directly in front of them. For example, as a parent, or caregiver, you should refrain from saying things like, so-and-so is doing really well with their walking, you should try to keep up with them more. If you feel like another parent, caregiver, or someone else with a disability, is doing well with a challenge they face, and you want to share that insight with your loved one, you could say something like, I realize this issue has been a struggle for you, so-and-so had the same problem and tried this, would you be interested in trying the same strategy? By phrasing it like this, you are not comparing your loved one to someone else, but offering them a possible solution for a struggle that they are having, and giving them the option to choose not to take you up on trying the strategy, if they are not interested.)
32. Don’t write me off as not being able to do something until I have shown that I truly cannot do it. (This one is pretty self-explanatory, at least from my perspective, but it is important to remember that the disabled loved one in your life, may gain skills at different times, and ages. For instance, I did not have any interest in learning how to walk until I was 13 years old, by then medical professionals had told my mother that I probably was not going to gain that skill, with hard work, lots of therapy, and most of all a change in my motivation, I can now walk with the aid of a walker. Other people in my life, have reported that their disabled loved one has gained skills, long after doctors, or other medical professionals said they would not. So, the point of this tip, is to allow your loved one to grow, and realize that their potential for learning a skill might not be cut off, just because they have reached a certain age, and that they still deserve your support in learning that skill, no matter what age it comes together for them.)
33. If I have siblings, make time for them, tell them that you love them, and explain why it might seem like at times I require more attention. (Being one of three siblings, I can tell you, that there were times when my nondisabled siblings felt left out. My mother did her damnedest to try and make sure that they had adequate information about my disability, and the extent of care that I needed, to make sure that they realized that just because I needed more care, did not mean that she loved them any less. By making a conscious effort to support everyone in your family, not just your disabled loved one, but all of those that you love, and treat them all as individuals, as a parent, or caregiver, you are enhancing everyone’s sense of self-worth, from my perspective. Additionally, by educating your nondisabled family members about the needs of your disabled loved one, it allows them to develop empathy, and understanding, without building up resentment. Lastly, from my perspective, it is always a good idea to make sure that your nondisabled loved ones are aware that they can come to you if, and when, they feel left out, and that you will work on a plan to mitigate that feeling. If you are unsure of how to talk to your nondisabled loved ones about these difficult feelings, you can start by acknowledging that they might feel left out. For example, you might say, I realize it can be tough when your sibling needs a lot of care, and sometimes, I have to put them first, but how about you and I, pick a day, where it can be just the two of us? This might require scheduling additional caregivers for your disabled loved one, but from my perspective, everyone in a family deserves to know that they are loved, and deserves to be shown that love. Additionally, it could be helpful to explain to your nondisabled loved one why the person with a disability in your life, needs the type of care that they do. For example, you could say, your brother needs help putting his shirt on, because his muscles don’t allow him to do it himself, and/or your brother is working on getting his muscles stronger, so that he will be able to put a shirt on, but right now, he still needs my help. It helps to be factual in these kinds of conversations, and not describe one sibling in terms that might devalue the other. For example, saying that one sibling needs your help because they are special. Providing factual information, also helps the nondisabled sibling to understand that disabilities, do not make one person better than the other, or less than the other; they are just something that some people, have to deal with. This also shows them that not being able to do something, is not an indicator of someone’s inherent worth.)
34. Sometimes you can’t always get what I need by being nice; don’t be afraid to use aggressive words and actions when advocating for me. (Too often I see parents or caregivers that are afraid to ask or push for things their loved one needs, because of worries about how they will be perceived by the people that they are negotiating with. From my perspective, it is better to prepare for a fight, and then realize that maybe you don’t need the flamethrower, then to go into a battle, such as an IEP meeting, and lose, because you didn’t bring your metaphorical arsenal with you. You can always put the weapon down if you find that people are accommodating, but remember you, especially when your disabled loved one is a minor, or if they are unable to speak for themselves, are fighting for what they need, and their quality of life. You are their first defense from discrimination, harm, and ableism, and it never hurts to let perpetrators of these injustices know, that you will not stand for them. I’m not saying that you should always threaten to sue a school district, but you are well within your right to say, my child is entitled to an appropriate education, as per the Americans with Disabilities Act, and if you cannot meet my child’s needs, we are within our right to ask the district to fund alternative education transportation. You can also stand your ground and say I am not leaving, or the solution you have offered, is not what my loved one needs. Contrary to the popular saying, when advocating for your loved one, you are likely to get more things done with somewhat vinegary words, than with overly honeyed ones. This goes for doctors, and medical professionals, as well. As a parent, or caregiver, of a disabled loved one, you are well within your right to ask questions about treatment protocols, or procedures, and ask doctors to explain these procedures, and protocols, to you in nonmedical language. Obtaining information to best serve your disabled loved one, is not selfish; from my perspective, it is a form of preparedness, that can allow you to make the most informed choice, especially when the choices presented are difficult.)
36. Don’t forget to go out and vote, and keep an eye on things like educational, healthcare, and other legislation, that will affect people with disabilities. (From my perspective, because of the widely varying healthcare between states and countries, it is important to keep an eye on laws that affect these areas of government, as these policies, can have huge impacts on things like your loved one’s access to personal care, supplemental income, and other things they may need to live their lives, as independently as possible. Now that you have a disabled loved one in your life, healthcare issues especially, are something that will impact your life greatly. If you have concerns about a law or governmental policy, you may be able to ask your loved one’s service coordinator how this new policy will affect certain benefits your loved one receives. Additionally, reaching out to your local legislative representative and explaining why a law should not go into effect, or why it should, can be a good tactic for those who have the energy to get involved in political efforts. At the very least, by going out and voting, you are raising your voice for your disabled loved one, and exercising your right as a US citizen to have a say in the policies that are created. If you are outside of the US, I encourage you to look up voting policies for your country, as well to make sure that you have a say in policies that affect people with disabilities, for your geographical area. Additionally, as your disabled loved one becomes eligible to vote, you can have conversations with them about the power of voting, voting access, and the importance of checking in with their support systems about policies that affect their access to care.)

Well, everyone, I know that this has been a long and somewhat emotionally charged post, but as always, I hope that it has given you something to think on. Feel free to leave comments detailing your perspective on any, and all, issues raised here. Is there something else you think parents or caregivers of a disabled loved one should be aware of that I did not list here? Let’s start a conversation.

Sincerely yours,

Sorloquator

Additional resources:

https://www.emilyperlkingsley.com/welcome-to-holland

(Essay that focuses on loving your child for what they can do.)

https://smithkingsmore.org/the-trouble-with-welcome-to-holland/

(counterpoint to this essay that highlights the grief that some parents and caregivers of disabled loved ones may go through.)

https://www.youtube.com/@SpecialBooksbySpecialKids

(YouTube channel that strives to reinforce the message that all disabled people, no matter their condition deserve to live good lives. This channel can get a little this disabled person is inspirational at times, but it also has really good examples of own voices videos that shed valuable light on a variety of disabled experiences.)

https://www.youtube.com/watch?v=fyGeX8gqx58

(concise video from the disabled creator based in the UK, explaining ableism.)

https://www.youtube.com/watch?v=rqJxfnioF3Y

(additional video from the creator mentioned above, highlighting the additional form of discrimination against disabled people called disableism.)

https://www.verywellfamily.com/how-to-get-an-iep-for-your-child-3106880#:~:text=Getting%20an%20IEP,that%20their%20child%20is%20evaluated.

(Basic website describing overview of getting your child an IEP.)

https://www.understood.org/en/articles/the-difference-between-ieps-and-504-plans

(website explaining in simple language the differences between 504 and IEP’s.)

https://www.youtube.com/watch?v=vUFIFFca6p0

(video from an autistic content creator detailing the importance of sexual education for autistic people as well as key strategies for teaching sex ed curriculum to those on the autism spectrum.)

https://www.youtube.com/@SquirmyandGrubs

Popular Inter-Able Couple on YouTube who highlight a variety of disability issues, and provide a valuable adult perspective of disability. I don’t love all the videos on this channel, but they are a great place to start if you’re looking to learn more about what it’s like to potentially have a romantic partner who is also comfortable providing your personal care.)

https://www.youtube.com/watch?v=iz1xiuuA8AY

(even though this video specifically mentions autistic men, and how they can be more prone to problematic behaviors like stalking, it also makes a great point, that just because somebody is autistic, doesn’t mean that they should not be taught about problematic behaviors and why they are problematic. Another strength of this video is that it is created by somebody who is autistic themselves.)

https://www.ssa.gov/ssi/text-eligibility-ussi.htm

(breakdown of supplemental Social Security income requirements from the US Social Security Administration. Additionally talks about a separate form of money for people in need of medical aid.)

https://www.ndrn.org/

(National disability rights organization dedicated to protecting the legal rights of disabled people in the US.)

https://adapt.org/ (disability rights organization centered on the idea that disability rights and civil rights, has a distinct emphasis on making sure that disabled people are able to live in their own homes, not nursing homes.)

https://autisticadvocacy.org/wp-content/uploads/2015/01/ASAN-Anti-Filicide-Toolkit-What-Is-Filicide.pdf (thorough document put forward by the autism self advocacy network, explaining what filicide is, why is an important issue that needs to be talked about within the context of disability rights, and important information on how to talk about it.)

https://rsa.ed.gov/about/states

(website which lists vocational rehabilitation agencies, basically like employment agencies for people with disabilities, by state.)

https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list/index.html

(list of state waiver services for people with physical disabilities, by state through Medicaid.gov as of February 29, 2024.)

https://acl.gov/programs/centers-independent-living/list-cils-and-spils

list of centers for independent living by state these places can help connect you, and your loved one, to other resources, including housing.)

https://amaze.org/what-is-amaze/

(home page explaining the vision of amaze.org is a wonderful website for explaining slavery, and sexuality, to kids, and teenagers, in an easy to understand format, also really great for adults who need a refresher.)

https://www.youtube.com/watch?v=DPSeFCaaJDM

(a read aloud of the board book yes no, a first conversation about consent.)

https://www.amazon.com/Ultimate-Guide-Sex-Disability-Disabilities/dp/1573443042/ref=pd_lpo_sccl_1/132-0665491-1693811?pd_rd_w=2p1CZ&content-id=amzn1.sym.1ad2066f-97d2-4731-9356-36b3edf1ae04&pf_rd_p=1ad2066f-97d2-4731-9356-36b3edf1ae04&pf_rd_r=DN3R2H0CG4NG5AHNM7CP&pd_rd_wg=RasRT&pd_rd_r=4437d636-1535-4268-9394-232a7901cd89&pd_rd_i=1573443042&psc=1

(highly recommended sexual guide within the disabled community.)

https://www.amazon.com/Bang-Masturbation-People-Genders-Abilities/dp/1648412289/ref=sr_1_1?crid=81LVDOQ8KCBE&keywords=bang+masturbation+book&qid=1706552712&s=books&sprefix=bang+masturbation+book%2Cstripbooks%2C224&sr=1-1

(book which is queer positive, focusing on masturbation, it also has a section on masturbation and disability.)

https://www.amazon.com/Am-Ace-Advice-Living-Asexual/dp/1839972629 (Book by a wonderful asexual queer content creator designed to answer common questions about asexuality.)