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  • Writer's pictureHannah's Hope

Self-Advocacy: A necessity for adulthood.

ExceptionalLives is a non-profit organization whose mission is to encourage and guide families of children with differing abilities by providing resources, information, skill-building tools and connections to other families who are like them. They understand that parents with children with neurodivergent minds can have an exceptionally hard time finding support and resources, so they have created a great space for that. They posted an article on the blog on their website titled, "How to teach self advocacy to your student with disabilities" to advise parents of children with disabilities on how to prepare their blooming teenager for adulthood. It's no secret that teenagers have a lot going on with their ever-changing hormones, constant social pressures, schoolwork, and personal exploration of their own identities, however when you throw a disability and an ever approaching transition to adulthood into that mix, it can be a real whirlwind. Not only does a child in this situation need unconditional love and support, they also need parental teaching and guidance on how to develop the skills they will need to be independent and advocate for themselves. That is where the topic of self-advocacy comes in to play. Self-advocacy is about taking responsibility, speaking up for your needs while also consciously making decisions for yourself and your future. Teaching is one thing, but add modeling to those teachable moments and then they will really catch on. You can slowly incorporate more opportunities for them to help out around the house, create and choose parts of their schedules as well as encourage them to speak up in conversations at appointments with their specialists, therapists, teachers, etc. It is important to note that self-advocacy is more than taking care of yourself. This skill, if you'll call it that, is more about having the ability to direct the path of your life, make and collaborate on your own goals, speaking up for yourself and getting help when you need it. Emerging adults with differing abilities may need more time to develop these life skills and they may even need a more specialized approach from parents and caregiver to help them harness this skill. That's why it's best to start implementing moments of learning in early childhood to help them as they grow to fully develop this skill for when they are quickly approaching adulthood. This article goes on to list some easy steps for teaching self-advocacy in your young child, the first being, encourage your child to be involved in their own transition planning. For teens, it is helpful for them to learn about the road that lies ahead, what resources are available to them and the decisions that they may have to make. Their involvement and learning process will look different depending on their own strengths and challenges. If your child has an IEP, then they should be encouraged to collaborate on their own transition planning by at least the age of sixteen as this will help them better understand their current and/or future goals and services. To put this idea in list form, think: 1. talk with them about their goals, challenges and the support they will need to achieve their goals in the future. 2. Teach or provide them with tools to appropriately articulate their needs and ask for support (communication devices cam be used if this is a struggle). 3. Invite them to IEP and transition meetings. 4. Encourage them to find activities, hobbies, volunteer opportunities, work, etc. outside of school that allow them to learn and use new skills. The second step is to help your child connect with role models and support systems. Other individuals who have similar experiences or share the same disability as your child are likely to be the best teachers in terms of self-advocacy. So, finding a group is key to gaining this crucial social and learning experience for your child. But, finding a support group like this can be a challenge, especially if you live in a smaller or more rural town, so online options as well as those in your community are the best places to look. If you can connect with support organizations or other parents and ask them for suggestions. Bridges4Kids is a great online resource as they provide a list to help families find online communities. If there is one in your community, ask your local Parent Training and Infromation Center (PTIC) about peer-to-peer matching, which would be incredibly helpful in allowing your child to connect with someone with a similar disability who can serve as a guide or mentor. Lastly, if you are on social media, you can search the #ActuallyAutistic hashtag to find more resources or families. The third step is to share online transition tools with your child. There are several school and healthcare related tools that were created specifically for teens with disabilities listed in this article that if you choose to explore them, could be helpful to you and your child. Options for school transitions are: Youth Transition Toolkit: A guide for young people with disabilities transitioning into adulthood (created for children in California but it useful for other states as well), Dude, Where's My Transition Plan? (includes interactive checklist, quizzes and places to write their own notes) and Adulting Shorts: The "TEA" on IEPs: Part 1, 2 and 3 (short comics to help kids understand their transition planning process. As far as healthcare transitions go, those are: Smooth Moves Youth Health Transition (interactive site to help children manage their own healthcare), Got Transition? (quizzes, activities and checklists to help them prepare to manage their own healthcare), Getting Ready for Youth Health Transition (HYT) (checklist for teens to gain more responsibility in terms of healthcare that was originally made for kids in Louisiana but is useful for others as well) and Health Transition Planning Fact Sheet (checklist also made for Louisiana youth by Children's Special Health Services but it can also apply to anyone). The next step for helping your child gain self-advocacy is to stay connected to your child. Maintaining a strong connection to your child as they prepare and embark on this new transition helps them to feel supported and capable to take some big steps towards adulthood. A strong relationship between you and your child and your child and other family members provides them with trusted allies that they can count on for support. Spending time with your teen will also allow them with more opportunities for learning the skills they will need in adulthood like listening to and retaining instructions, expressing themselves, problem solving and facilitating positive social interactions. For example, you can do things with your child that they enjoy, remind them that you love them and support them unconditionally, encourage them to communicate their needs and thoughts throughout the day, get and stay involved with what they are doing at school and within the community and work as a team on their transition planning. The original article provides a helpful link for tips for communicating with your young adult that may be beneficial if you are struggling to connect in order to achieve some teamwork with your child. While it not easy to take on the task of teaching self-advocacy to a child with disabilities, it is one that proves to be worth the effort. Regardless of their abilities, a young adult who can help guide their own transition process will ultimately fare far better in adult life. Your job as the parent is simple: encourage, support and trust that they are capable of being included and have the desire and ability to learn and grow as much on their own as they wish. Hopefully, you, your child and the rest of your family will gain a stronger connection, deeper trust and a sense of pride in your teen as you watch them become a functioning adult who is one day going to succeed.

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