“We’re talking about Autism.”

(Our boy Griffin)

For the past six months, every waking hour and some of our dreamtime ones, too, have been dominated by what you’re about to read. It’s important to write about stuff like this. That’s why I’m so glad my wife Annie chose to put her thoughts, feelings, and our journey down in words.

 

“It’s a boy!”

Kelsey and I had been in the ultrasound room for maybe five minutes when the tech announced with certainty the gender of our second child. We looked at each other and smiled. Coming into this, we were both fairly indifferent as to what we were having — we already had a daughter who we were over the moon about, and we knew we would be ecstatic to have another little girl. However, once we heard those words and realized that we not only were having a healthy baby boy, we were going to have the pleasure of experiencing parenting both a daughter and a son, and we couldn’t have been more excited.

After a fairly easy pregnancy and delivery, Griffin Noah entered the world on May 26th, 2011. He was perfect. We brought home our boy and felt our family was complete. He was such a good baby, very content and easily entertained. He was also full of smiles and very affectionate, especially toward me. As he got a little older, we noticed that developmentally, he was behind where his sister, Harper, had been when she was his age. Griffin was nearing 12 months and wasn’t walking or talking yet. But he was a boy, and we had friends and family with boys who were also slow to develop. We felt like it would just take a little extra time and were confident he would come around.

On September 18th, 2012, which happened to be the day before my thirty-second birthday, Kelsey and I were gearing up for a big day. He was speaking at Emens Auditorium that evening as Ball State’s Freshman Common Reader author, and I was excited that I was actually going to be able to attend! His events were typically out of town, and with two kids, it was never easy for me to hear him speak. With a babysitter lined up, and plans to meet up with family and friends later that evening, I was looking forward to a night out. There were just a few things we needed to do first.

Griffin and I dropped Harper off at preschool and headed across town to the pediatrician’s where he was scheduled for his 15-month well visit. While waiting for the doctor to come in, Griffin patiently played with puzzles on the floor. Dr. Burt entered and greeted us as usual and started asking some questions. He had reviewed Griffin’s developmental questionnaire, and because he was not yet talking, he asked, “How does he tell you he wants something?”

I sat there, trying in my mind to come up with an example of a time he had ever shown me that he wanted or needed something. I couldn’t. I said, “Well, if he wants his sippy cup, and it is on the table, he just gets it.”

“Does he bring toys or other things he is interested in to show you?”

“Umm, no, I don’t think he ever really does that.” I could tell Dr. Burt was feeling uneasy about the answers I was giving him.

“Does he imitate you?”

I could think of a few things Griffin would do back and forth with us — smacking the table, wrinkling up his nose and making a silly “oomph” sound, but I was starting to feel nervous about where this conversation was headed. Dr. Burt squatted down next to Griffin, who continued to happily play with his puzzle. He looked from Griffin to me and spoke four words I will never forget, “We’re talking about autism.”

I couldn’t believe what was happening. He had to be wrong. How could I not know that something wasn’t right with my own son? I tried to think what I knew about autism, and it wasn’t much. As prevalent as it is (1 in every 88 children), surprisingly I didn’t know anyone personally who had a child with this diagnosis.

“He interacts,” I managed to choke out through tears. It was like I was grasping for anything that would make Dr. Burt change his mind.

He told me to schedule an appointment in a week to come back with Kelsey after we had a little time to process things and come up with questions. In the meantime, we were referred to Riley Children’s Hospital for an official evaluation and also First Steps, a government program that provides in-home therapy for children ages birth to 3 who have any kind of disability or developmental delay.

I kept turning around to look at Griffin in his car seat on the way home. It felt like I was looking at a different child, like I was bringing home someone else from this doctor’s appointment. We walked in the door to Kelsey asking us how the visit went, and I almost hated to say it out loud because it just made it that much more real. He was just as distraught by my news, and we immediately started pouring over the Internet, reading every article and watching every YouTube video we could find. It was terrifying. We read list after list of red flags for autism and were broken hearted to discover that he did exhibit some of the signs. He wasn’t always responding to his name, he never used gestures such as pointing to indicate he wanted something, and he never engaged in any imaginative play.

I cried for seven days. I was sad, pissed off, and scared.

It was agony waiting to get an appointment with Riley. We waited over a month to hear from them and were finally scheduled for November 26th. We had read so many times how important it is diagnose autism early, and we felt so helpless just waiting around for his appointment. Fortunately, after a few weeks, Griffin was able to start his developmental therapy with First Steps, and his therapist was wonderful. It was such an emotional roller coaster ride, and I looked forward to her Tuesday visits when she would bring me back up. I joked that she was not only taking on little Griffin, but his 32-year-old mother, too.

We were scheduled to see a developmental pediatrician as well as a clinical psychologist for his evaluation at Riley and were relieved when they concluded that, although Griffin did show some red flags, they didn’t feel like there were enough to diagnose him this early and planned to re-evaluate in six months. They recommended a book called An Early Start for Your Child with Autism, and once we started reading it, even though we did not receive a diagnosis, we felt the authors had a way of describing our son. In a way, it was a relief for me to come to this conclusion. The past few months, I had watched Griffin do things that I questioned and wondered and worried about, and my heart just broke over and over and over again. With this new perspective, I could be more understanding of the way he is, and I could start celebrating all the things he was continuing to do and improve on, as opposed to being so afraid of what he was failing at because I didn’t want a diagnosis.

Autism is a neurological disorder that causes social-interaction difficulties, communication challenges, and a tendency to engage in repetitive behaviors. The severity and symptoms of the three impairments across the autism spectrum can vary widely. No two children on the spectrum are the same. Aside from Griffin’s communication delay, he also is not always the easiest to engage. He is willing to play and interact, but it needs to be on his terms. Although other children sometimes amuse him, he doesn’t seek them out, and he can be content to play alone.

Griffin is currently enrolled in preschool two mornings a week, which provides the opportunity to be around other children, and he also now does speech as well as developmental therapy each week. We are excited about the progress he is making! Although this has been such a struggle for me, I try to keep things in perspective, as I know people deal with so much worse.

Griffin loves his momma’s hair. He loves Bob Marley music. He giggles uncontrollably when his daddy swings him through the air. He smiles, laughs, and hugs. He melts our hearts and amazes us every day.

We couldn’t love our boy more.

 
22 comments
CathyShouse says:

I know Griffin has two amazing parents and a devoted sister who will be on this journey with him. I appreciate your sharing your story and support you in your efforts to raise your son and raise awareness at the same time, which I think is awesome.

Maya says:

I hear you! This story is rather similar to ours, only our pediatrician didn’t believe us. We knew something wasn’t quite right by 12 months but everyone said boys develop slower. At the 15 month appointment we were denied a referral to an audiologist (our pediatrician insisted he wasn’t autistic and we should wait another 3 months before referrals), so I got M an appt. myself. From there we were sent to a speech therapist, who said he had cognitive delays, and from there we were sent to a developmental pediatrician. At 16.5 months we got a tentative diagnosis of autism, and told to come back in 6 months but in the meanwhile get him started in early start.

At his 6 month visit it was obvious that M had autism, and I’d had time to process this as well (I say I because my husband had guessed the diagnosis before even M’s 15 month check-up but hadn’t told me, which is just as well because I wasn’t ready to hear it).

The road can be hard. There were so many days I cried that first year. But a diagnosis at this age is the BEST possible scenario. The sooner you start therapies, the better! We were able to get intensive therapy from early state. Not right away, but as M got older we added more things: OT twice a week, speech twice a week, an autism preschool 3x a week, and a behaviorist at the peak. Today he’s 4. He’s speaking VERY well. He goes to the district special ed preschool, in an integrated classroom. He gets OT twice a month outside of what he gets in school, that’s it. He’s pretending. He’s asking questions, giving hugs. I believe that his early diagnosis is partly to thank for his progress. Some of it is probably luck.

Good luck on your journey! We have met some incredible people over the last 3 years. I hope you are surrounded by support. Your son is beautiful!

Kelsey says:

Maya, thank you so much for sharing your story. It gives us hope. No one has given us a roadmap of what we should be doing. That’s the frustrating part. Medical professionals give a little bit of info and then when you ask them some version of “What would you do if this was your son?” they avoid the question. There isn’t a right and wrong, but we want to do everything we can to help Griffin develop. That’s why we’ve found it so important to talk to other parents who have been through this.

Katey Boller says:

Kelsey, you know some amazing autistic people….like me! There are lots of ways to be proactive! Get involved with Early Head Start and First Steps. My son has gone from a nonverbal pervasive development diagnosis to Asperger’s. He’s 21, has a full time job and a girlfriend. The key was early intervention. If you need some resources, just call!

Kelsey says:

Katey! Thanks! Great to know that I know so many amazing autistic people!

Maya says:

I wish there WAS a roadmap! Different families find success in different ways, and everyone defines success differently. I’m happy to share with you some of the resources that were helpful to us, if you’d like. Overall though I’d say don’t let any therapist or doctor’s expectations define Griffin’s possibilities, and trust your gut.

Gary Hyslop says:

Your story parallels that of a couple of friends of mine, whose son was diagnosed at a fairly young age. Many of the characteristics you describe applied to him exactly. They did get him into a therapy program and I can tell you the results were dramatic. He is now 8, and you would actually never know about his background. If you know exactly what to look for, sometimes you can pick it up (he’ll sometimes say your name frequently in conversation), but a casual observer would never know. If anything he has become very outgoing child with a great sense of kindness toward others.

It’s clear Griffin has a couple of wonderful parents. He will do well.

Kelsey says:

Thanks, Gary. We’ve seen big improvements already.

Nakia Pope says:

Kelsey — I know we talked a little about Griffin when you were visiting Winthrop. I am glad you were able to connect him with the folks at Riley, First Steps, and the other doctors and therapists. You guys are awesome parents. Thanks, as always, for sharing your stories.

Kelsey says:

Thanks, Nakia. During my visit we were still uncertain about what path we were on. We have a better idea now. It felt good to talk to you about it at the time. Thanks for listening.

Bill Grindle says:

We had a similar journey with our son, who is now 15 happy and doing great. We lived in Noblesville IN, at the time our son was officially diagnosed with Aspergers by the team at Riley Hosipital, he was 4 at the time. Early interventions help dramatically and they made a big difference for our son. He is uniquely him, as we all are uniquely ourselves. Your love will help him get through any challenges he faces just as it would have without a diagnosis.

Kelsey says:

Bill, We’ve seen a big change in Griffin since he started therapy a few months ago. One of the reasons we wanted to share was because we knew there had to be folks we knew who had been through similar experiences. All of these comments are so helpful.

Tim Oswalt says:

Wow Annie, I am so proud of you for not holding back and sharing your experience. I know if it were me I would want to say “No, no, no, I want everything perfect.”

Annie says:

I definitely went through a stage of denial, Tim, and it has taken a while to feel ready to share it with everyone. The responses have been overwhelmingly supportive and kind! We have already met and continue to meet more amazing people all the time! Thanks for your support!

Sally says:

Well you certainly know we are on this journey as well. It’s been the hardest thing I’ve ever had to go through or hear as a mom, but I know it’s going to make us stronger. I pray, cry, get mad, sad and everything in between, but I love my boy sooo much. We’re there for each other Annie, and it has been helpful for me. Thanks!

Autism is just a label. Love, faith, prayer and therapy can peel that label away. That label doesn’t have to define who he is. I know. I am labeled quadriplegic. But I am more than that label. That’s not who I am, not how I define myself. Yes, I have quadriplegia; yes, I have paralysis issues…but I can choose to let other labels define me: strong brave undeterred confident … and happy!

Annie says:

Thanks, Sally! Your friendship means so much to me!! Like I’ve said, our boys are going to be rock stars!

Beth Anne says:

Oh, dear Annie and Kelsey, we love you and your littles so much. I remember how I felt when out daughter was diagnosed with developmental and speech delays–I was so used to her and what she did, how could I have missed it? How could I not know?

That was ten years ago, and she made steady progress all along the way. And your wonderful son will, too; he will be surrounded by your love and support and all the help of those who love you as well.

I admire your strength and your courage and your honesty. You have all been in my prayers since meeting you, and you remain there, with great specifics added.

See you soon :)

Lisa Combs says:

You don’t know me, but I am a “writer friend” of a “writer friend” of Kelsey’s, Beth Anne Brink Cox. She pointed me in the direction of this blog entry, and I am so happy that she did.
What a beautifully composed gift you have given by writing this post, to so many other parents who are experiencing the same thing and feeling so overwhelmed. You may have already discovered the following link http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf
to Autism Speaks “First 100 Days Kit”. It is a great resource for parents as they navigate the new country they have found themselves wandering.
The Autism Coaching Team I supervise has worked with over 300 individuals with autism in the past three years, from age 3 to 18, at all points on the spectrum, and they are all unique. I love the quote from Stephen Shore, that if you have seen one child with autism, you have seen ONE child with autism. But I can tell you one thing they all have in common: the world is a better place because they are in it. The same is true for your young man. You are about to go on an amazing journey with your son and the sky is the limit for what he can achieve. If I can be of any assistance, I hope you will feel free to contact me, friend of a friend to friend of a friend! I would be more than happy to help. :)

Allia K says:

Wow. I am reading “Where am I wearing?” For an anthropology class and within the first chapter I had to see what this blog was like and I’m glad I checked it out. This was so moving and the beginning broke my heart, but I am so happy to hear your son is making progress. Everyone is different but that doesn’t mean we stop believing in those who take a little longer to grow. It looks like you have a loving and strong relationship with your husband and one capable of the most nurturing environment. I wish you all the best and I will be continuing to follow this blog!

Deborah Fourman says:

Was very fortunate to hear you speak at Criterion Meeting at Arcanum Public Library last evening.How great to get paid and hear someone speak that I have wanted to hear for sometime! I read a lot of your travel writings some years back, is there any chance those will be published in book form sometime?I would like to reread them. Keep on doing what your doing, and let your passion continue to show through! great job!
Deborah Fourman~

Let your voice be heard!