Everything changed

In an instant everything changed, yet nothing really changed at all. He’s still the same sweet, energetic, book-loving, bright, intensely curious boy as he was the moment before the three women, sitting cross-legged in our playroom, uttered those four words to me.

Most beautiful boy in the world.

“High risk for autism.”

“It doesn’t mean he has autism but it is recommended he be evaluated for a possible diagnosis right away.” I was stunned and immediately defensive. The second woman chimed in, “he barely looked at you while playing patty cake – he mostly looked off to the side.” This comment was more than I could handle. How could she bring up such a joyful activity where my son literally laughs the entire time? Who cares where he’s looking? “Would you like to pursue treatment options?”, the third woman asked. The room felt like it was closing in, and I felt the blood draining quickly from my face.

Isla, my 10-week-old daughter began crying on her playmat. It had been a long, 2.5-hour evaluation and Everett, approaching lunch/naptime began pulling on my sleeve. The third woman commented on Isla’s wild and adorable hair; I could barely find words for a response. I needed them to leave my home immediately, so I politely explained it was naptime and that I’d sign the paperwork and be in touch soon.

Over the next three days, I felt more shock, anger and denial. My husband, too. We learned that moving through the stages of grief is very common for parents whose child receives an autism diagnosis. Everett doesn’t yet have a diagnosis; but as we’ve been learning more and more, we feel it’s very likely he soon will.

These hard days of parenthood we won’t soon forget – – sitting in front of the fireplace in the very early morning hours wondering what life will be like for this child who is so perfect to us. Crying the moment I close his bedroom door after nap or bedtime because it hits me the hardest when I’m alone in my own thoughts. Wondering how we missed the “red flags.” And, realizing now that some of his most endearing quirks most likely represent classic autism pathology.

Some of you who follow me may know that my husband is a doctor, his specialty is anesthesia and I am a former physician assistant in women’s health turned stay at home mom. How is it possible that two highly trained medical professionals could miss this?

It’s easy and it happens all the time to many parents. Our children are perfect in our eyes. We embrace and appreciate their endearing quirks. We don’t want anything to be wrong with them so there is a psychological advantage to protecting our minds from the possibility that something might be wrong with our children. We don’t want to see it.

Our only real concern for Everett was his lack of speech development which we brought up at his 18-month pediatric appointment. We were told not to worry; he’s probably just a late bloomer. Although that may still be true, since he hasn’t yet received a formal diagnosis of autism, we have since taken a crash course in autism spectrum disorder and have realized that Everett possesses a number of characteristics suggestive of ASD.

These include:

Lack of words & no two word phrases – Everett has a lack of meaningful words and no two word phrases. While he does have some vocabulary it is not quite up to the 50 words that would be expected at this time.

Pointing – we did not realize that this was such an important development and means of communication. Everett does not point to anything apart from some words and images in two particular books.

Response to name– We used to think he was just a toddler going about his own important business, but he does not look up in response to his name.

Calling us by name – He does not call us by name. He does babble ‘mama’ and ‘dada’ but not directed at us.

Interest in others – He is not very interested in his little sister which could be developmentally age-appropriate but also may be an indicator of ASD.

Repetitive behaviors – Everett exhibits some repetitive behaviors such as spinning, walking in circles or walking backwards. He also likes to view the world upside down at times.

Lining up toys or objects – Everett lines up his toys and other objects such as rocks or tupperware lids. We noticed early on that he would line things up according to size but were unaware that it could be a potential sign of autism.

We believe that like any child, Everett will have his strengths and weaknesses. We believe he is extremely bright and perhaps even gifted. Unbeknownst to us, Everett taught himself numbers, many shapes and some colors. His first word was “star” followed by “oval” and “circle.”

Right now we struggle with analyzing his every behavior through the lens of autism. Overnight our world view changed and what were endearing quirks yesterday leave us wondering “is that his autism?” today. It’s all so new and I have learned from other parents that eventually we won’t think about autism quite as much.

Right now we have more questions than answers. I’ve contacted every developmental pediatrics facility in a 75-mile radius and have completed more 15-page intake packets than I can count. This is just to be placed on a waiting list. Oh and how long is that list? 9-12 months!

But, like I told my husband, if there’s a will there’s a way when I’m involved. If there’s one thing I’m confident about it’s that my husband and I will find Everett the best resources to encourage his development. It is my mission. As it stands now he has an appointment with a developmental pediatrician in exactly 2 months. Until then I will continue calling every pediatric neurology, psychologist, psychiatrist and developmental pediatrician that I can find to see if an earlier evaluation is available.

We have coordinated services for developmental therapy through the county and are working on obtaining speech and occupational therapy. The waitlists can be shockingly long in some places for this type of therapy and private therapy can be prohibitively expensive (to the tune of over $100,000.00 per year out of pocket). Even with insurance we estimate costs to be well over several thousand dollars per month.

ABA or applied behavioral analysis is considered by some experts to be the gold standard of therapy for autism and other developmental disorders. Everett is currently on the waitlist for ABA therapy pending formal diagnosis and referral.

Early intervention is key with ASD. I’m learning that an ASD diagnosis is a good thing because it means we’re on the way to better understanding Everett’s world and finding better, more meaningful ways to be a part of it.

When I considered whether or not I would share this experience, I considered our isolating experience with colic and how I believe that loneliness and isolation contributed to the development of my depression. Obviously ASD is far, far, far more isolating and lonely than colic. As we traverse the stages of grief, I sense that depression is coming – only worsened by isolation. For me to be the best mother to this wonderful boy, I need support, and that means sharing our story in a way that will not negatively affect him or our family.

I share because I want to create community and decrease loneliness. But, I also want to learn as much as I can and spread awareness. I share because I know vaccines do not cause autism, and we need more parents advocating for research in other areas. If we keep beating a dead horse we’ll never discover new information about the disorder. I share because I don’t want any parent to feel shame around this diagnosis. I share because I personally want access to every possible resource that could benefit my child.

If you are the parent of a child on the autism spectrum I would love to hear from you and about your experiences, any advice you have for us, favorite toys, books, education resources.

💙💙💙💙💙

7 Replies to “Everything changed”

  1. Your bravery and your love will lead you forward 💕 here for you in spirit, thought, and whatever support you may need. Everett is beautiful.

  2. Well said, motherhood can be so isolating and circumstances like ASD or colic can contribute to even further isolation. Thank you for drawing awareness to this and supporting your fellow moms.
    What a beautiful boy you have. He is lucky to have parents that are determined to give him the best the world has to offer, ASD diagnosis or not. Thinking of you during this time of change for your family.

  3. Hi! I love following your journey on Instagram. My son is 10 months and a handful, so it’s be amazing seeing your posts. Tired mum club!
    I’m coming at this from a different angle I suppose, but just wanted to say my husband has autism, and he’s the best person I know. His quirks are his strengths. He’s led a fantastic life and wasn’t diagnosed until much later! Not sure if this offers you any comfort.
    Also, Makaton! Amazing communication tool. I work with those with additional needs in the UK and we in the LD and ASD community love Makaton. In particular Mr Tumble ‘Something Special’ on the BBC! Well worth a YouTube visit.
    Sending love to you and your family x

  4. I know this is probably overwhelming for you guys right now. If I could share one piece of advice from a professional standpoint, look for a therapist who is trained in Floortime/DIR. I have seen a huge difference in kiddos with ASD once they start this type of therapy

  5. Hi! I so loved reading this! I started to suspect that my now 25 month old was more than just a “late bloomer” around the 18 month mark, but ignored my gut and listened to all of the well-meaning advice to wait until her 2-year check-up to follow-up with her doctor. It crushes me that I waited so long. She is severely speech delayed (assessment placed her in the 7-8.5 month range), was behind less significantly in other areas, and shows many indicators for ASD as well. Fortunately we kick-off our first meeting with the county program next week to discuss our course of action for therapy. But naturally all of the other evaluations through our insurance are similar to your wait times (9-12 months). It kills me and is so discouraging, but I know I am going to have to fight and work my but off to get my daughter all of the help she needs! Reading about your experience with colic and the subsequent isolation and depression felt like I was reading about my own experience with my daughter. I really felt like I was not “myself” or the best mom I could be her first year because of my PPD and anxiety, and my biggest fear is falling back into that void again. It’s reassuring to read about other parents experiencing the same thing 💛 I so appreciate everything you’ve shared, and will be following your journey while we embark on ours as well! -Taylor

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