By Scott Jones
They say that living with a special needs child is akin to laying your entire family on a water bed and that every slight movement she makes reverberates through the rest of the family. Nothing can be closer to the truth.
My wife was the first to notice. She would complain to our pediatrician about Summer’s “unusual attachment to objects”. I would come home from work and she would talk to me about little things that she saw that were weird or different. Honestly, at the time, these conversations would annoy me to no end and I refused to buy into any of it. “All kids are different”, I’d tell her. Maybe I was blind. Maybe I was willfully blind. I’d end up watching her and looking for the differences. In time, even I couldn’t deny that something was going on.
It was really during the early part of preschool that we noticed differences. Summer chose to play alone, unless her sister was around. She would play with Annabelle but rarely did she engage another child or let one play with her. I remember watching another little girl ask her on the playground when she around 3 or 4, “do you want to play with me”? Summer’s response was a loud, “NO” and she turned and continued to play independently. By this point, she had various stuffed animals or toys that she had to have with her at all times or very age-inappropriate meltdowns would occur.
She was delayed in pretty much everything, from sitting up, to crawling, and to walking and talking. Everything came late, except for reading. We’d read to her daily and by time she was four, she point at a book and name it. We figured she was memorizing the covers but soon she was identifying words and if we came to a word that sounded different or interesting while reading to her, she’d say “point to it”. She’d stare at if for a couple of seconds as if memorizing it then say “okay, go on”. We never “taught” her to read but by time she started kindergarten, she could read on her own. To this day, she has never written phonetically like most kids. She has always memorized the spelling. We thought she had a photographic memory. Today, we realize that she is hyperlexic.
Somewhere along the way, Summer fell in love with rodents. Mice, hamsters, gerbils, rats, squirrels, guinea pigs, beavers, chipmunks, hedgehogs, you name it, she obsesses over it. Everything she did revolved around them. From reading, to movies, to tv shows, conversations and even birthday party themes, all she ever wanted to talk about were rodents. Even today, she likes to say, “what if I were a flying red squirrel but still had a human voice”? Fortunately, lots of popular tv shows and kid’s movies are about or have rodents as the main character so her interest can almost be seen as relevant. Rodents are her “special interest”.
Summer is ten years old now and overall, she is happy. She still struggles with ADD, anxiety, social skill deficits, math dyslexia, mild obsessive compulsive traits as well as reading comprehension issues. We are very fortunate because the people at the public school where we live have been incredibly supportive. They already knew her before she started school as she has been receiving occupational therapy there since she was three. Getting an official “diagnosis” and an IEP was the key to getting her the support that she needed in school. Today, they provide her with a paraprofessional in the classroom to help with executive functioning and organization. She gets one on one work in math in addition to working with a math tutor at home once a week. She works with an OT and a speech language pathologist who helps her with her social skills while working with her on pragmatic language skills. Additionally, she is in therapeutic horseback riding as she loves nature and animals and she has made a great connection with the horses.
The internet has been a great resource for connecting with adult women on the Autism spectrum. Everyone that I’ve found and chatted with have been incredibly generous with their information and support. This is the one area where young girls like Summer could really use some help. I think that having a mentor who understands what it is like to think the same way she does and who grew up the way she is growing up will make her life so much easier and more fulfilling.
Hi Scott,
I was curious as to when Summer started therapeutic horseback riding? I continue to hear remarkable stories about the positive effects of equestrian therapy programs. Thank you for sharing Summer’s story with all of us, and we appreciate you supporting the AWN’s Pepsi Refresh Project.
She started this past spring. She really isn’t interested in team sports so we wanted to find something that could be her thing. We found a farm with a woman who has been working with kids like her for twenty years. She is incredibly patient and Summer never had any fear of the horses.
Scott,
It’s inspiring to read how well Summer is progressing. I have hyperlexia as well as my youngest son. I’m glad you mentioned that hyperlexia does not equate reading comprehension.
I look forward to hearing more about Summer as she ages. I know the hard road she has ahead of her but know that she can and will have a successful life, many thanks to parents like you
thank you.
Scott,
I can’t help but admire the photo of your daughter… she’s beautiful. Even though my special interests differed from her special interests, I can definitely relate to Summer in a few ways, such as unusual attachment to objects, being more interested to play by myself than with others, and memorizing words phonetically in elementary school.
I am so glad you have found us here at the Autism Women’s Network as a resource and support source for your family, and I wish Summer the best of luck as she continues her journey through adolescence and adulthood.
Thanks. The people here have been awesome.
Since Summer’s birth, when I was aware of her very difficult & programatic beginning in life, I have been interested in, and curious about her progress. Since I’ve heard nothing more from Marjory about this, and when I receive family photos I study them carefully, wondering which one is Summer. She is absolutely BEAUTIFUL, Scott, and with the support she is receiving, I know she’ll have a happy and useful life! I wish Judd was here to appraise the situation. He had a masters in this area, and was always so VERY interested in Special Needs children! I shall always be interested in her health and development. Much love, Mary DeWitt
Overall, I think she is doing really well. A lot of it comes down to her maturing out of things. She is easily frustrated and we are really working on her controlling her temper. She starts a social skills group at Kennedy Krieger this week.
Scott!
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Your writing is truly moving and speaks to the possibility that exists for each person to live a vibrant quality of life! I can’t believe how grown up Summer looks in this picture, it has only been 4 months since I last saw her and I can see such a change!! Hats off to you for all your patience and dedication to ensuring that Summer is supported in growing to her fullest potential. She has a remarkable brilliance that I have a feeling will make a difference one day (though in many ways she already has
With appreciation,
Tina Scaccio
PS. Please let Summer know that I miss her and I will do my best to visit in the winter time!
Tina,
Thanks for the comments. She really appreciated the letter and she wants to be pen pals. Summer has been meaning to write you back. She misses you a lot and talks about you often. She actually wrote about half a page but her handwriting was all over the place. We’ll finish it up this weekend and send you a picture from over the summer.
Scott
Thank you for sharing Summer’s story. We have not known her that long but long enough to see the true beauty in her. She is a sweet young lady and truly is blessed with a great family. There is no bigger love then the love a father has for his daughter. We know Summer is going to be fine becasue she has you. We look forward to seeing everyone on there next visit to our office.