At Milestones Autism Resources, we are celebrating Autism Awareness Month by sharing the personal stories of real families and advocates in the local autism community. Join our #PowerofPersonal campaign by sharing your unique autism story on social media this month!
Lisa Danielpour, Milestones client and volunteer
“My husband and I gave alot of thought over the years about how and when to tell our son that he has high-functioning autism, or Asperger’s, because we wanted to make sure that it didn’t become a label that he felt would define him, that he would know he has all the potential to do what he wants to do, and that he should feel great about himself just as he did then.
So we ended up deciding that I would tell him when we were away on our annual family beach trip because it’s such a special time together and very relaxing. So my son and I took a wonderful walk along the beach and I talked to him about all the wonderful things about him and then I talked a little bit about some of the challenges that we both knew he had struggled with and was still struggling with. And then I gave him that bigger picture of “this is autism” and told him that I didn’t want it to be a label that would define him.
For all that worrying and stress, he was like, ‘This really helps me. Now I better understand who I am and why I have the struggles that I do. It’s like you put all the puzzle pieces together for me.’
Recently, as a young adult in perspective, he said, ‘It’s kind of funny that I really thought it felt like puzzle pieces since puzzle pieces are the actual symbol and icon for autism.'”
Phil Irvin, Milestones, Board Member, and 2018 Benefit Honoree
“We were always open and honest with our son about his autism. Since he was diagnosed before his 4th birthday, he’s heard the term for many years and understands it impacts people in various ways. We always explained the truth that everyone learns differently and everyone has their own personal strengths and challenges as well. So fortunately it didn’t need to be a one-time or major discussion. We also used the ‘benefits’ of autism like his incredible memory and attention to details that others miss as positive attributes.
A parent’s role to advocate for their children is not optional, it is essential. It absolutely makes the difference between enabling your child to live life to the fullest they are capable of, compared with never knowing how much they might accomplish if only they had better supports. Many schools, teachers and administrators have good hearts and the best intentions, but no one will ever care for your child like you do. Time is of the essence and those precious early years of school and development can’t be re-done. There is no time to waste. So in addition to all of the extra things ASD parents have to contend with, they must also be firm and forceful advocates for their children. This is not limited to school, but everywhere and all the time. Each day is a potential breakthrough, just waiting to happen, but if you don’t set them up for success, it won’t happen on its own.
The sad thing I sometimes see is that parents are either so overwhelmed or believe their child will grow out of it. Advocating can be THE difference in a child’s life so while it takes work, please embrace it, for your child’s sake.”
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