Diagnosis Doesn't Define Patient's Future
Written by Marcia, Kendall’s mom
It gets easier, and your dreams for your child are not over. You may not believe this now—I bet you’re thinking, like I did, that you’ll never be able to handle this; that your hopes and dreams have crumbled before your eyes.
Then I remembered that my job as a mom is to help my children be the best they can be. I have the same expectations for my daughter diagnosed with Angelman Syndrome (AS) as I have for her typically developing sister.
Here is some of the best advice I received when we first started our journey:
- Don’t change your vision for your child. Is it college? A career? Being a contributing member of the community (or all of the above like us)? Focus on these dreams and find services and assistance to help. Until our daughter tells us or shows us differently, we will do everything we can to help her achieve her dreams.
- Presume competence. Always. Just because your child may not be able to verbalize or show you what they know, does not mean they don’t or cannot “get it.” They are so smart—always believe this.
- Do not give in to “assisted helplessness.” Have high expectations for what your child can and will do—in all areas. Never let yourself or your child off the hook because of their diagnosis. We want our daughter to learn to live independently. It may take extra time, but it is worth the effort.
