What Parents of Individuals in the Disability Community Wish More People in Society Understood

                

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In the beginning of August, I reached out to individuals in the disability community for their perspectives about what disability pride means to them. This time I reached out to parents of individuals in the disability community for their perspectives about what they wish more people in society understood about people in the disability community because their perspectives matter too! While there are many kind, accepting, inclusive people and the disability community has many parts of their lives like everyone else, they along with their families also tend to face many misconceptions as the following participants know. Some participants chose to keep their name anonymous to protect their identities while other people chose to be more open about their identities.

1. "I find that society is better than it was years ago because there is more understanding and acceptance. There are more resources to support parents, such as activities and programs for teens and adults with disabilities. 

    One of the hardest things is that there is no checklist for parents to follow by age or by need, to help parents easily find the resources that they require. One of the things parents need to know is that when their individual is an adult, the parents may no longer have the authority for decision making regarding care in a hospital situation. A power of attorney or guardianship alleviates this where the parent or an appointed care-provider has the decision-making authority.

    Parents need guidance from providers regarding the services that are available when their child turns twenty-one and thereafter. There are not enough services after age 21 and waiting lists can extend for years. In Pennsylvania, many services are paid for through their waiver system. There are different waivers with each having a pre-determined cap on the amount of expense that they will pay for. The exception is the 'consolidated' waiver, which typically has no financial cap for the services that it covers. I have found that many parents wait far too long before applying for any of the waivers. My recommendation is to start the process early, especially if you think that you may need the consolidated waiver in the future as there are waiting lists and the wait is determined by the level of criticality.

    Employment is very low for people with disabilities too with the percentage of those unemployed ranging near 85%. Parents need to determine their individuals' interest in employment and begin honing the skills necessary for successful employment. There are programs that can help you with this. Again, begin early as specific skill sets and social skills can take years to develop.

    Adulthood is a challenge for many parents to which I have spoken. The routine of going to school ends at 21-22 for most. It is helpful to investigate the services and providers prior to exiting the school system to understand what services are available for your individual and to determine whether your individual qualifies for these services. Many adult day programs have closed due to funding or are at capacity. It is best to investigate these services at least one full year prior to school ending.

    Parents need to develop a network of resources to connect with. Learn about doctors for specialty things, services that are available that they may have experience with, programs that are available in their area as supports coordinators may or may not be aware of services offered through agencies other than their own, and just having a friend that lives it every day just as you do for those times when you need a sympathetic ear or suggestions of other things to try to alleviate your current dilemma." - Linda Kuepper, mother of an adult child with autism and IDD in Pennsylvania, co-founder/CEO of Autism Cares Foundation

Related Link:

• Message about ACF from Linda Kuepper: Autism Cares Foundation has been around for 17 years and is a wonderful place to connect with others. You can participate in their activities, programs, adult services, and parent information sessions geared for individuals of all ages serving individuals having autism and other intellectual and developmental disabilities (IDDs). To learn more about ACF, you can visit our website www.AutismCaresFoundation.org

2. "I wish that more people would accept that people with disabilities ARE like everyone else. They like a lot of the same things as everyone else. They like dance, music, ice cream, the playground, parties, swimming, games, field trips, pizza, playing, movies, shopping, pumpkin patches, holidays, the beach, toys like other people. I don't like it when people won't accept that people with disabilities like a lot of the same things as everyone else and wouldn't include my daughter in the same interests and activities. Their disabilities aren't the only part of them that matters. People with disabilities can also feel the same way about stuff that anyone else their age would feel. They are going to get annoyed at a lot of the same things that other preteens or teenagers would get mad at, like when they don't get their way, because they are people too. It takes getting to know them to realize what they have in common with others just like getting to know any other person." - anonymous mother of an adult daughter on the autism spectrum who stutters with ADHD, dyscalculia, Tourette's Syndrome, and symptoms associated with PTSD and Generalized Anxiety Disorder (GAD) in Pennsylvania, United States

3. "I appreciate the effort of friends and neighbors to be kind to my special needs son. The Special Ed majors at a local college went out of their way to create monthly events for these young adults, and they were wonderful. Low-key activities, refreshments, and conversation made them a special day for my son. I appreciate people who say hello to my son, even if he is not always up for conversation. I feel great compassion from our community for his social missteps, and I love them for it. I want people to know that my son has many good qualities, including humor, compassion, a concept of God and angels, and a love for protecting little children. I appreciate how many people do look for his good qualities." - Love, Lori, mother of an autistic adult son in Pennsylvania

4. "I wish that more people (medical professionals included) knew about the medical risks that come with having disabilities. People with Down Syndrome are at risk for having leukemia, heart defects, sleep apnea, Celiac's disease, diabetes, hearing loss, vision troubles, gastrointestinal issues, and so much more. People with other disabilities are at risk for many health concerns as well. Even if a person with a disability doesn't having any medical health concerns yet, they could develop them at any time since their disability causes them to be at risk. I also wish that more people knew about and understood how much the Down Syndrome community struggles cognitively. One of their most significant struggles is reading, which is affected by their struggles with phonemic awareness and phonics. When someone struggles with phonemic awareness and phonics, that can cause struggles in other developmental areas in so many ways, especially writing, verbal and written communication, making friends, self-esteem, and time management." - anonymous father of 4 children with Down Syndrome (triplets included) in Texas, United States

5. "I wish that more people knew and would accept the fact that not all disabilities are present at birth. A person could have no disabilities one day, and then, fall and hit their head, or being banged on the head from physical abuse any time later. Either of these things can cause brain damage. Car accidents, violence, and physical abuse (depending on the specifics) could paralyze a person. Trauma survivors, like my daughter, are also at risk for Post Traumatic Stress Disorder (PTSD), which alters the brain, can damage the nervous system, and can hijack the digestive track traumatizing the person and their loved ones even more. Cancer survivors who are and aren't already in remission also tend to have additional medical concerns. There are people with and without disabilities who will actually argue you that none of this is true though and that all disabilities are present at birth. When I shared my daughter's story and all that she is been through and all that I have been through with her and explaining the different causes of disabilities and health risks that can come with certain disabilities with someone with disabilities who was supposed to be another disability advocate, they said, 'No, that's not correct. People are always born with disabilities when they have them. It is impossible for disabilities to develop later.' Like I would lie that my daughter was walking and talking on average before suffering the abuse that caused the permanent physical and mental injuries that she has every day for the rest of her life while thriving? When I said this to them, they of course said that they never said that I was lying about what my daughter went through and still insisted that the causes of my daughter's disabilities were impossible despite the fact that all TBIs are caused by an outside force or displacement of the brain in the skull and PTSD is always caused by trauma. The word 'trauma' is in the full name of the diagnosis for goodness sake! They also insisted that I don't know what I am talking about because they wrongly believed that what I was saying was incorrect and that if I am 'not disabled' that I can't possibly know what I am talking about when it comes to disabilities when I actually do have disabilities. That is another thing that I wish more people knew and would understand and accept: Not all disabilities are as visible as other disabilities and not everyone experiences their disabilities the same." - anonymous young mother (on the autism spectrum with ADHD) of a teenage daughter with a Traumatic Brain Injury (TBI), paraplegia, Post Traumatic Stress Disorder (PTSD), Major Depressive Disorder (MDD), panic disorder, insomnia, chronic pain, Chiari Arnold Malformation, Postural Orthostatic Tachycardia Syndrome (POTS), Hashimoto's Disease, Irritable Bowel Syndrome (IBS), and Crohn's Disease in Pennsylvania, United States

6. "I wish that more people would listen to parents like me with a child who is nonverbal or not fully verbal about how scary it can be to have a child who is nonverbal or not fully verbal. If my verbal but not fully verbal child would ever get lost or accidentally separated from me, other family members, teachers, or caregivers, I know that he is capable of knowing to use the Picture Exchange Communication System (PECS) on his iPad and Sign Language to ask for help, but that only does so much and not everyone knows Sign Language. Also, not everyone is kind enough to help disabled people when they ask for help or knows how. Someone may want to help, but not know what to do to help. People need to be educated about how to support people with disabilities more often. It is scary when my child is sick because it is so hard for him to communicate what is wrong. His disability is only cognitive and social-emotional and nothing life-threatening, but because he is so limited in being able to tell people stuff, he could not be able to tell me, her family, teachers, or caregivers about certain symptoms that could be a potential life-threatening sickness." - mother of a son with autism in New York, United States 

7. "I wish that more people would realize that people with disabilities are capable of success. People with disabilities can go to college, earn merit scholarships, graduate college, get Associate's Degrees, Bachelor's Degrees, Master's Degrees, and Doctoral Degrees, and pass certification tests. In fact, a growing amount of people with Down Syndrome are graduating from college. Contrary to popular belief, people with intellectual disabilities are a lot smarter than many people think. Give all people with disabilities a chance to show you what they can do instead of jumping to underestimating them or dismissing their capabilities when they try to show you." - anonymous mother of a 22 year old daughter with Down Syndrome in Colorado, United States

8. "I wish that public places were more accessible to people with physical disabilities. My daughter who loves to go out in public to get out of the house just like most people constantly faces barriers to enter, move through, and exit public places. So many public places have inaccessible doors with not enough room for certain types of wheelchairs to fit through and no automatic doors. Sometimes I worry that one day if we would need to evacuate a public place in an emergency and my daughter would get separated from me somehow or something would happen to me that she would not make it without an automatic door. Schools also need to invest in making the structure of their buildings more accessible to students with physical disabilities and their family members who may have physical disabilities along with visitors who may have physical disabilities. I know a lot of schools require people to buzz in, schedule an appointment, or have an ID to scan to enter the building because of all that is happening in the world with school safety. I support this completely, especially if it means protecting my children, all children, and their teachers and admin. However, if my daughter and everyone else needs to evacuate the school building in an emergency and gets separated from the adults that are responsible for her safety or they are unable to assist her in an evacuation due to unfortunate circumstances that may be not in their control, an inaccessible door to exit through could jeopardize her safety whereas doors that open when student/staff ID cards are scanned next to them would be more accessible exits for her to independently try to evacuate safely, which I know that she is capable of doing. Fortunately, my daughter's unfortunate type of paralysis only causes her to be paralyzed in her trunk, legs, and pelvic organs. So, she is fully capable of using her hands and arms." - mother of a daughter with paraplegia and an intellectual disability in New Jersey, United States

9. "I wish that more people would be willing to be educated about what the lives of people with disabilities are like and how to support them. It's like not everyone but a lot of people don't want to learn about disabilities not only because of discrimination, but because they think that it's a 'weird' subject. They also need to realize that all of the teasing about being in Special Education is very hurtful. Words are not just words and the saying, 'Sticks and stones may break your bones but names will never hurt you' is not true. Words do hurt a ton and making fun of someone for having Special Educational needs or being different IS a big deal. Never judge what you don't understand." - mother of a 12 year old daughter with Autism Spectrum Disorder (ASD) and ADHD in Pennsylvania

10. "I wish that more people in society would look past the differences of those with physical or mental disabilities and get to know the person for who they are. Not just having preconceptions without giving the person the time to get to know them. People with these preconceptions write off people with disabilities off." - anonymous father with a daughter with Autism Spectrum Disorder (ASD), ADHD, dyscalculia, and Tourette's Syndrome in Pennsylvania, United States

Do you have a child in the disability community? If so, what do you wish more people in society understood about people in the disability community? Please share in the comments section below! Your perspective matters🫶🏻

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