How to Advocate: Advice from a Mother of a Child with Special Needs

Photo courtesy Jana Dluehosh

I am a mother to three beautiful, active and creative boys. When our oldest son, Wil, was around 3, his teachers suggested we get him professionally evaluated. I have to admit, denial is strong. Facing testing was one of the most difficult parts of our journey. Fast forward to a diagnosis of autism spectrum disorder. With this diagnosis, came the need to educate ourselves. My husband and I have been advocates for Wil in the community, at various churches, schools, grocery stores, gyms, and even IKEA childcare. It seems there is no end to advocacy. 

I am here to tell you, it gets easier. My son is a happy and thriving 14-year-old who has autism. If you’re new to the advocacy journey, the following tips are a great place to start:

  • Cry.  It’s OK. As the parent of a child with special needs, you will have to be strong again and again. Crying does not mean you are weak. It’s important and healthy to let yourself experience the wide range of emotions you will experience on this journey. 
  • Find your village. Advocacy is challenging, exhausting and lonely. Surround yourself with people who are curious and slow to judge. I highly recommend Camp Attitude, a free respite camp for families with children with special needs, as a way to connect with other caregivers. Also try searching for Facebook groups within your community, or post in your local neighborhood groups like Nextdoor or Buy Nothing to find friends on a similar journey. PDX Parent also provides links to disability resources here.
  • Nurture your partnership. Caring for a child with special needs can be daunting. If you are part of a parenting team, be sure to take the time to invest in your relationship. Feeling connected and in sync will make the task of advocating together much easier, and will make you a happier, healthier parent, and partner. 
  • Research. There are support organizations out there for all sorts of special needs. Talk to your child’s speech, occupational and physical therapists, special education teachers and other parents. Learning as much as you can about your child’s disability will make you a better advocate and will help you feel more in control.
  • Get involved. Join your school’s PTA, if you can. It is much easier to advocate from inside the system. Portland Public Schools offers a separate PTA for families with special needs children, SEPTAP or Special Education PTA of Portland. You can also find a list of external resources on the PPS website
  • Be Confident. YOU are your child’s best advocate. Trust your instincts; you know your child best, and your insight is valuable. Your love is your child’s best medicine. 
  • Breathe. Being in the present moment is where joy lives. When you are advocating for a child with disabilities there is so much in question about the future; those concerns will always be part of your journey, but don’t let that rob you of the present moment with your beautiful child. This journey is a marathon, not a sprint. You’ve got this. 
Jana Dluehosh
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