A guest post by Jessica’s dad –
By now, if you have read the previous posts, you have a good picture of how Jess has journeyed to her current place in this world. I’m sure you’ve noticed that she has gone through many transitions in her life; progress, setbacks, teachers and aides coming and going, various physicians and service agencies coming and going, etc. – you get the picture.
With all the many changes and transitions there has been one strong, loving and constant advocate for Jess and that has been her mother (who I will refer to by her alias, Natali). Many of you reading Autism After School may be a parent or caregiver for a person with autism, or, maybe you are someone who has an interest in helping a person with autism. If you are one of these people or just someone who wants to learn more about the transitions someone goes through living with autism, then this blog is for you! Natali has a lot to share and she can help you learn more about autism and how you can be a better parent advocate or support someone who is.
I could write for hours about Natali’s impact on Jess with many stories but that can wait for another day. For now, I want to note a few “lessons learned” from me watching Natali advocate on Jessica’s behalf over the years. Hopefully, this will encourage you as it did me.
1. “Momma knows her child better than anyone!” You can insert Daddy or parental custodian but the point is the same. Parents, you can learn from Autism After School and advocate for your child from a position of strength. Natali was always open to listening to the “experts”, physicians, teachers, etc but she stood her ground when something didn’t seem right about an IEP or plan put forth by others. Listen to others but trust your instincts because, like Natali does, you know your child better than anyone else!
2. All parents get frustrated being the primary advocate for their child. This is normal and will be a recurring theme as you advocate for your child. Natali got so frustrated at times she would cry and at other times she got so mad she could chew nails. The point you, and I, can learn from Natali is that these emotions are normal but you can’t let them distract you from the long-term goals you have for your child. Natali is a wonderful example of how you can navigate through the inevitable setbacks and frustrations to keep advocating for your child.
3. “Don’t stop thinking about tomorrow!” Fleetwood Mac’s hit song with this title is great advice. Natali was and is such a great advocate for Jess because she is constantly thinking about Jessica’s tomorrow. Follow Natali’s example and focus on improvements in your child’s programs and daily life with an eye to the short and long-term future of your child. Baseball games are rarely won with home runs. It’s the singles that usually add up that will result in a win for your child.
I hope this post has been of some value to you. Keep reading Autism After School!
Next up – Standardized Testing
If you are new to Autism After School, Jess is an autistic and visually impaired young adult. I am telling our story to help other parents and professionals learn from our journey. My hope is to help others better prepare for experiences within the educational system and the transition to adulthood.