When Ashlyn was about three months old it became clear that there was not a parenting book out there that could help me.
She did not meet her milestones. Well she did, just months, sometimes years, after they were supposed to come. We went from doctor to doctor. Autism was not the buzz word that it is now. and with severe gross motor delays, every doctor we met ordered x-rays and blood work and testing and testing and more testing. Some thought is was cerebral palsy, some a genetic disorder. No one really knew where to put us.
In the meantime we spent two days a week at occupational, physical and speech therapy (by today’s standards not nearly enough) and I waited for a diagnosis with a constant tug in my mind that they were all missing something.
At three years old Ashlyn could say cheese and hot dog, she liked people but only adults, she hated the grass and the sand and tags in her clothes and getting her hair brushed and bright light and noise, but no one said autism.
She started a special education pre-school 5 days a week and she thrived. There were kids in the class with classic autism and I did not see my daughter in them so I thought that must not be it. Not knowing, at the time, that autism comes in as many shapes and forms as there are kids with the diagnosis.
We plugged along with no “label” just piles of discouraging testing from the school countered by amazing gains the longer she was in a classroom setting.
Eventually I learned of a nationally recognized autism expert who just happened to have an office close to us.
I drove there thinking I already know what he is going to say, I just need him say it.
He did not evaluate her the way the million doctors of the past three years had. He brought in a doll house and wanted to watch her play. She filled the doll house, with puzzles and books from the corner of the room. Then she took them all out and proceeded to put them all back in again.
He looked at me as if there was never any question.
I will always remember that ride home. I felt an odd sense of relief that we finally had a diagnosis and could move forward, but was also scared out of my mind. Getting an autism diagnosis is like staring into a black hole. No one can tell you what your child’s future will hold.
Ashlyn is 15 now and has far surpassed any future I had imagined for her. If you were to meet her you would not see autism unless you looked for a minute or two and knew what you were looking for. She will talk your ear off, is great at math and can tell you all you ever wanted to know about cooking, her bus route and autism.
In all seriousness, the road to get here has been rocky and we aren’t “there” yet, wherever there may be. Every time I think we can coast for a bit we hit a bump and I fall off. I worry about what is happening, why it is happening and what we are going to do to keep it from happening again.
She doesn’t.
Ashlyn just keeps on going as she always has. Never knowing she has a story to tell at all.
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I just discovered your blog after being pointed over here by a friend. We’re just starting out our autism journey with my three year old and I’m so grateful to be finding blogs by moms who’ve gone down this road before me… Thank you for writing…
Ashlyn is beautiful! I had a rough night with my 8 yo daughter who has autism and this was exactly what I needed to read tonight. Thank you for sharing Ashlyn’s story.
I am so glad that it helped. Those rough nights are SO tough and always leave me wishing there was someone who understands. Hope today is better.
Wonderful story. I am getting my masters in Early Intervention…don’t you wish they had developmental therapists like they do now back when Ashlyn was young?! It is really amazing how far we have come, and where we are headed. There is a long journey ahead for autism research, but the interventions we are able to provide children with autism are really changing the way people think and the way parents parent. Your children are beautiful….Ashlyn is such a fighter, just like her Mom!
Completely agree, the resources available now are amazing compared to what was available when she was young.
My daughter has been labeled “on the spectrum” with “mild autism or possibly aspbergers disease ” , and when i finally paid for a psychiatrist to get a diagnoses, he said she had adhd, and put her on concerta. I don’t really agree with him so I took her off the meds, and she is just the same.I think my daughter is wonderful. different, maybe, but wonderful. I am glad to read your story, and all your experiences.
Amber, I read what you wrote and I wanted to both hug you and scream in frustration! I knew my child had autism – no doubt in my mind. But he is very hyper, as I am assuming your daughter is too. He was having a rough day when we went for our first eval. and was all over the place. The main doctor over seeing his testing immediately said no autism it’s ADHD, but the psychiatrist who did the second part of the testing said he saw too many “quirks” and was not comfortable saying he did not have autism – he wanted to re-test him in 2 years. We went back in two years, and he was diagnosed with PDD NOS, an autism spectrum disorder. Hang in there and keep advocating for your daughter, you will find the right doctor for her.
So glad that I followed Adrienne here today to read her post! I have 2 girls, 7 and 9 and the oldest was finally diagnosed with Aspergers when she was 6. The onset of puberty is something I am concerned about so I might e-mail you if you don’t mind. Girls on the spectrum are rare, and all the ones I know are younger than mine. So happy I found your blog!
I too have a child that was diagnosed over 10 years ago. It was such a struggle to find a doctor that understood what we were dealing with. I feel blessed to have him in my life. He is a reminder of pure, innocent love. He will be 13 shortly and has overcome most obstacles placed before him and continues to thrive. Thank you for your posts, you are not alone.
I love this post! Ashlyn is an awesome person just like her mom. You have given her so many opportunities and that is why she is where she is today! Call me if you get a minute….I didn't know about the gross motor delays…makes me wonder about O. The school is more and more concerned about her.
More milestones indeed.
What a great story…Ashlyn gives me hope for my Audrey! Audrey started out with gross motor delays as well and of course all we knew about autism was Rain Man…didn't know anything about autism having to do with motor delays. Thanks for this!