Tips for Families with Disabilities by Emily

Tips for Families with Disabilities by Emily - July 2017 Scholarship Essay

For my Ted Talk, I would speak about living with children who are disabled. I would be a good person to talk about this because I am a big sister to two brothers with autism, both on opposite sides of the spectrum. I care a lot about this topic and have started a Big Brother/ Big Sister program at my high school to get the disabled kids to be part of the school community. I also was a partner for my church group to start a Sunday school program to help disabled kids go to church with their parents. I have been a Personal Assistant to over five families in the last seven years, and I am going to school to become an Occupational Therapist.

When your family first finds out that one of you, or multiple of you are disabled, you kind of go through a mourning process over something you did not realize you could lose. This is important because this helps you come to the realization that this loss is not the end of the world, but instead is an opportunity to see the world in a different way that gives you a heart for others. You care because you know that a lot of people just do not get it.

Disability is not something that is a loss, but an opportunity to learn to love differences and see that there is more to life than being like everyone else. Finding a supportive community is a survival technique that is essential. DON’T SKIP THIS STEP! Take care of yourself, you can only get stronger if you do. Make sure those who look after your family are a good fit for you and your children. You need to put your family first and keep everyone’s needs a priority.

As a family with a child with a disability, you NEED to find community. It is a lot easier to not reach out to others. I know, I've been there. Getting used to the staring or learning how your kid reacts to certain situations, its overwhelming. not to mention you get very busy just trying to keep your head above water in your job or marriage. Eventually, every family I have met has come to the realization that they are stronger and can survive if they build community. I personally value this because my family had a small group at church that consisted of only families that had disabled members. This showed us that we were not alone, and that a lot of the problems that we were facing were common. We found mentors and hope through going to church. This is why I started a Sunday school program for my new church. I knew families needed less excuses to come out in public.

Another issue I found common for families with disabled children was the main caregivers not taking care of themselves. It is so easy for families to focus only on the disabled member because they need a lot of attention. If you are not careful, this could lead to high stress levels, divorce, non- disabled members acting out to get attention, and medical issues. Finding a way to spend time with your spouse is something you have to do. This might mean finding a babysitter for your teenage son or daughter. It is worth putting other people first. Take time to relax. Take time to go to the doctor or cook a healthy meal for yourself. Spend time with your non-disabled children. It can go a long way because if you are not ok, no one in the family is okay.

Speaking of finding someone to help you take care of your disabled family member, many families end up with services that let them have people come into their house. Services sometimes include nurses, therapists, personal assistants, social workers, and teachers. While having help is a great tool for you and your family, there are some things to look for when letting people come into your home. Your child and family are in a vulnerable position. Sometimes, your child does not have the ability to speak for themselves and it is important to acknowledge that. My family did not have any personal assistants but we desperately needed some that had the values I try to incorporate into my work as a personal assistant for my families. You need people that are honest even when they messed up - your child can not tell you what happened, you need someone reliable. You need someone with patience, probably because you are burnt out and you need someone who can do what you are struggling to do. And, you need someone who loves their job. I love knowing that I am helping my families grow. I love being able to challenge my kids with daily living tasks so that they have more independence. liking your job helps your kids and your family have the best experience.