When my older son Aaron with Asperger’s was young, I immersed myself in ever-evolving goals for him, including school, social skills, comprehension, extracurricular activities and his emotional development. The holiday season always presented such fun and excitement while planning for how to make our Hanukkah celebration meaningful. Our joy expanded when we had our second son Josh, who presented new complexities and made us think through how to make the holiday special for each of them. We wanted to enrich their relationship as brothers and our family traditions, while honoring Aaron’s needs balanced with Josh’s.
As a neurotypical, very energetic child, Josh loved noisy activities and events that could push Aaron’s sensitivities to sound or light into overdrive. Whether he was playing with noisy toys he received as gifts, enjoying loud exhibits at our local museum or mall often accompanied by live music, or begging to go to an IMAX movie, Josh plunged into experiences that could set Aaron’s sensory issues on edge (Aaron still remembers a very loud duckling game that fascinated Josh while haunting him). Aaron’s special interests such as exploring an art museum’s holiday exhibit or the Natural History Museum science hall for hours on end bored Josh endlessly. I found compromises like a foray to the knights in shining armor displays for Josh in between Aaron’s beloved tours of every painting in a gallery, while trying to ignore Josh plopping down on the seat by Aaron’s favorite painting and dramatically sighing for all to hear, “I’m soooo bored!”
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By the age of 2, my sons were not speaking words and sentences the way other children in their preschool groups were. They each showed precocious signs of their intellectual development, such as my older son drawing and diagramming out “The Very Hungry Caterpillar” book, including writing out words like “egg,” “cocoon,” and “caterpillar.” In fact, the first time he did it at preschool I thought the teacher was joking until she showed me and my son did it in front of me. However, he only spoke a handful of words for his age, so we had him assessed and indeed he needed and benefited from speech therapy. By the age of 4 both of my sons were speaking so well my husband and I joked that it that it seemed hard to believe we were so worried about their speech.
In our case, one son has autism, while the other had speech delays that were resolved with speech therapy. The son with autism was having social communication and sensory issues that my other son did not.
I will always remember sitting at the small table with my son’s kindergarten teacher in his classroom, knees knocking, heart beating, as she gently discussed the concerns she had about my son. She handled the moment so sensitively when she suggested I have him evaluated. I didn’t know much about autism beyond inaccurate stereotypes in movies. What could it mean for my child and his future?
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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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“It is such an incredible gift to have an organization like Milestones Autism Resources as our guide each step of the way.” – Lisa Danielpour, Parent
Lisa Danielpour offered to share her journey with us – and all of you. Hear more, in her words:
Aaron is my first born. When Aaron was 18 months, I started to wonder. Why isn’t he talking yet?
As Aaron reached 3 and 4, his development became even more alarming to me. Why do the other cute little preschoolers talk to each other in logical paragraphs while mine perfectly recites the script to endless Disney movies?
At each stage of development from childhood to adulthood we have navigated different issues. Trying to figure out, how can we best help him?
I’ve learned to trust my gut and build a team Inflatable Church For Sale of people who combine expertise and supportiveness.
When Aaron was young, I didn’t know then that Ilana Hoffer Skoff and Mia Buchwald Gelles were also struggling as parents of children with autism, they used their experiences to create this incredible organization, Milestones. Helping countless individuals, families, and professionals. And lucky us.
With the support of an incredible team by our side, my amazing son Aaron was able to graduate from Case Western Reserve University with a double major in Computer Science and Psychology.
It is such an incredible gift to have an organization like Milestones Autism Resources as our guide each step of the way. Before 2016 concludes, I encourage you to support Milestones, as you will, in turn, support families like mine.