The Beginning: Part 2

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Part 1 is here.

We had parent teacher conferences and things came up- “He can’t use a pincer grasp,” and “He’s always picking up tiny things off the floor,” and “He really likes to make this noise…”

One day, one of Toby’s teachers was sick, so a teacher from another class filled in. This teacher also “happened” to be a former speech therapist. (I say “happened” because I truly believe this was divinely orchestrated.)

She came up to me when I went to pick Toby up from school. She gently told me that she thought there might be more wrong than just a speech delay—she had a feeling something else was wrong, and whatever that was, caused the speech delay.

My heart sank. Suddenly all of those quirks Toby had seemed like symptoms of….something. Autism was never on my radar. I began to prepare myself for a diagnosis of a garden variety developmental delay, and made another appointment with a different pediatrician.

I sat there in the examination room with my husband and Toby. Elinor was with a relative. I watched the doctor give Toby various little tests to do and felt sicker and sicker as I saw him fail most of them. Finally, she came to the conclusion that he needed to see a specialist. She wasn’t comfortable diagnosing him herself.

I begged her for reassurance that he would be OK with just a little extra help to get him back on track (a thought I had used to comfort myself in my turmoil). She stopped, not sure what to say, and couldn’t meet my eye.

Then I knew she couldn’t give me that peace.

The weeks between that appointment and the appointment with the specialist were hellish. I alternated between denial of the doctor’s assessment and despair that he was intellectually disabled and would end up in a nursing home.

Thankfully, our doctor was kind enough to put a rush on our appointment. We were seen just a few weeks from our referral, which is unheard of with the practice we were going to.

My sister had agreed to watch Elinor in the waiting room while my husband and I took Toby to his appointment. Sitting down next to her, I whispered that that our pediatrician had briefly mentioned autism at our last appointment, thinking it was so far-fetched but at the same time shaking at the possibility. She wasn’t sure what to say. I wasn’t sure what I wanted her to say.

We were finally taken back to a room where we were grilled by a doctor about Toby. They asked us question after question and we tried to answer them as best we could. At one point the doctor asked me, “What makes you think he is intelligent?” A question I had never even asked myself.

“I don’t know,”  I said, “I just know he is.”

By the end of the visit, Toby had a diagnosis of mild-moderate autism. I was in complete and utter shock. We were given the famous (infamous?) 100 days packet and sent home with more appointments to follow up with later. I couldn’t bring myself to read more than a page or two.

At first, I was OK. I was sad but relieved. Finally we had a reason and a purpose. A goal.

I wore red lipstick for the first time and told myself I’d better get used to not caring what people thought about me or my son.

Eventually, I read the 100 days packet. All of it.

I finally broke down. I realized that our life would never be the same. All the information in the world couldn’t change the fact that Toby was different–and would be for the rest of his life. All the therapy in the world wouldn’t change the way his mind worked.

I was a wreck for a long time. I took on so much guilt and blame for not seeing it sooner. Toby was barely four years old when he was diagnosed. When I learned that the crucial window for autism intervention was before the age of four, I couldn’t let it go.

I obsessively went over our old pictures and videos, scouring it for what I now knew to be signs of autism. Hand flapping when he was a toddler. Dancing on tiptoes whenever he was excited. Playing with only the eyes or nose of Mr. Potato head while humming nonstop, and never putting the pieces all together.

And not a single video of him babbling.

I began to feel hungry for more information. I started reading everything I could find. I started analyzing everything Toby did. Not just him, either. I also studied every child I ever saw at the park, church or school.

Looking back, I see now that I was just hoping that I wasn’t the only mom to ever think their child was perfectly fine only to be shocked with an autism diagnosis.

I began to feel anxious all the time. I couldn’t rest. I couldn’t decide what I was supposed to do with all the facts swimming around my head, making my life a whirlpool of confusion.

Completely and utterly overwhelmed, I lost my ability to function in my life. One day, my husband came into the room when I was once again fact searching. I sputtered something about not being sure if Toby was orally hyposensitive or hypersensitive. He gently took the book out of my hand. Though I never would have put it down myself, once it was taken from me–I was glad it was gone.

I realized I desperately needed a break.

I decided to just take a step back, and eventually, to start over. This time, I went slowly. I went more by what other people could teach me from experience and less by pages and pages of facts, statistics and medical jargon.

When I started to learn this way, I retained a lot more information. Because I was learning piece by piece instead of all at once, I was able to emotionally as well as intellectually process the things I was learning.

The most important thing I learned about autism during this time was that EVERY child with autism is different. Not every single thing I read or hear about autism will apply to my child. The variations of people on the autism spectrum are endless.

This is my story.

Will you share yours?

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20 thoughts on “The Beginning: Part 2

  1. Lauren, this is beautifully written. We had no idea you guys were going through this. How old is Toby now? It was great to see you and your husband at the wedding!
    Mat the good lord bless you on this journey!

  2. Beautifully written. I never realized how hard your experience was for you and am glad you are putting yourself out there to help others going through the same thing. You are an inspiration!

  3. For the past two years, I have been fulfilling my dream of being a school teacher. With a daughter who has Asperger’s Syndrome (on the autism spectrum) I find I can spot a kid with autism before I read their IEP. When a student comes to me and lets me know they have autism, I high-five them and say, “that’s your super power!” The students beam and look pleased with this summation of their “disability” turned into an “ability”. What I have learned from living with a child who has Asperger’s is that it really can be a gift. Anna learns one thing extremely well. When she applies herself and focuses her energy she is amazing! To this date, she has been teaching herself Japanese, has built two computers from scratch (the first one took her two weeks, the second one a couple of hours), loves to learn about WWII and knows a ton of interesting historical facts, and wants to learn how to build a car engine. I have seen other Aspie students do similar feats. Their brains work differently than neurotypical brains. Look up Temple Grandlin as an example. I read her book, “Thinking in Pictures.” She has a wonderful website: http://www.templegrandin.com/

  4. What I meant when I said, “Anna learns one thing really well” was that she tends to focus on learning as much about one thing at a time as she can until she becomes an expert.

  5. I appreciate reading about your experiences. I completely connect with you! Will there be more to read? You hit the nail on the head by taking a step back and focusing more on what the experiences are, rather than the medical statistics. That is what we did as well and the results have been astounding. Encouraged by you, I have decided to share our story. I will let you know when I have it posted. Thanks again!

    1. I’m so glad you are going to share your story!! It’s hard to do, but it’s such a good feeling to get it out there. Can’t wait to read it! Yes, there will be more, just trying to get everything to a point where I am happy with it. 🙂 Thanks for coming by!

  6. Hello, my son is 8 and was diagnosed with autism at 2.5 years old. He is doing very well with 1:1 help in a mainstream school. If you have any questions then I’m very happy to help 😀

    1. Thank you so much, Jane! I’m so happy to hear how well your son is doing at 8! Toby is now six and we are getting reading to transition him to a mainstream school. The future is so bright for these special kids! 🙂 Thanks for coming by, and thanks for the support!

  7. Wonderfully written, Lauren! What a beautiful and challenging journey it will be as you all continue to learn together. Keep being head strong, and I look forward to reading more. Bless your lovely family! 🙂

  8. Hi Lauren, I just read your blog after Jonathan (better known to me as Elder 🙂 shared it on facebook. My husband and I were among Elder Swinson’s convert baptisms while on his mission. My husband Bradley, also went to your wedding. I had no idea you guys were struggling with this with Toby. My granddaughter was diagnosed with autism, and we are certain that her mom – my husband’s grown daughter – is on the spectrum as well. Our son, Jacob, was tested when he was 10 and missed being diagnosed by a hair (although the testing came out with ADD, auditory processing disorder, and a learning disability). He is socially gifted but has many of the same “quirks”. That became apparent after having our second son, who was developing typically, and totally differently, than Jacob did. When autism isn’t blatantly obvious, as in your son’s case, I know it can be frustrating going for years trying to figure out what’s going on and how to fix it. Just know our kids are super special, and have a mission in this life. Years ago, I read a book called Ephraim’s Children that talked about why these souls are on the earth today and how best to help them. If you like to read, it might be worth it. I wish your family the best on this journey, and thank you so much for sharing your story!

    1. I remember your husband attending our wedding! He was so kind. 🙂 Thanks for the comment. Our kids really are special, and I have learned so much from being Toby’s mother. I haven’t heard of that book before. I need to read it!

      All the best to you and your sweet special ones. 🙂

  9. I have loved your blog! My son was diagnosed with Aspergers (high functioning autism) in April this year. He’s almost 8. Your struggles of acceptance remind me of my own! I have struggled with the guilt also of not picking it up sooner. And those feelings of anxiety I can totally relate to as well! Thank you for sharing! I toying with the idea of sharing your blog with family and friends so that they can better understand where we are coming from! You do a beautiful job of describing it so well!

    1. Thank you Alisha!! It’s always nice to hear that I’m not the only mom to miss the clues. One thing I remember from the first few months after Toby’s diagnosis was that IF he had been diagnosed sooner, my PPD with my second child would have intensified (perhaps past what I could deal with), and I would have missed the enjoyment of her baby-days because I was worried about Toby, and all the appointments and therapies would have been that much worse with an infant tagging along. I believe that the timing of the diagnosis is in Gods hands; it happens exactly when it’s supposed to.

      Feel free to share! If I can help anyone in any way I’ll be over the moon. 🙂

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