In Real Life, There is Autism

I know, I promised you food this week. I’m sorry. I also had wanted to share a little bit more about the Trim Healthy Mama (THM) plan that has been such a gift in my life and has changed my eating and health so dramatically in the past month. But each time I sat down to write the easy stuff, God reminds me that there is something more important.

He does that to me a lot.

I pray for the words and He steers me in a direction that I don’t always want to go. Stubbornly, I fight to go my own way and write what I want, what is easier, and ultimately find that I can’t write another word until I have surrendered and written what He has for me.

He has given me the love blogging and storytelling because He has a story He wants me to tell.

It is a joy and a pleasure to write about daily life around the Hacienda, to share good food and recipes and to connect with other bloggers and readers. It has never felt strange or wrong for me to put my family and my life “out there”. I felt such a leading to do so when I started this blog that I had no fear or hesitation.

After all, how can you write a blog about good company and creating community from behind a closed-door?

I trust God with our story. With the sharing of it and with the direction He takes it.

And while I struggle with it sometimes, I know that sharing our story means sharing more than just the fun stuff, or the yummy stuff, or the easy stuff. It means sharing the real stuff too.

Real life.

And in real life, there is Autism.

This past week, our sweet boy Nathan was diagnosed with autism.

Nathan. Autism.

Nathan has autism.

Nathan is autistic.

I think that may be the first time I have truly put those words together.

So, there is no easy this week. In my head and on my heart, there is only autism. Hours of reading and research already. And prayer.

How did I not see this? What did I miss?

Nathan, autistic? But he makes eye contact, he is funny and engaging, he has a sense of humor and is full of life and personality. He is social and happy and doesn’t throw huge fits or tantrums. He connects. He is kind and empathetic, loves animals and small children. He is talking now and telling stories and plays imaginatively and independently.

He is all of those things and more. And he is also autistic. I didn’t see it.

I have read some incredible blogs in the last several days, written by mamas with autistic children. I tell you what, you can read all of the clinical information you want but if you really want to know something, read the words of a mama who lives it everyday. Their stories are both similar and unique but the universal theme that runs through each is  … “I knew something was wrong.”

I knew something was wrong at six months, twelve months at the very least by two. I knew something was different.

I didn’t. I didn’t know. At least not that early.

As an infant, my son did not display many of the things I have read about. He made eye contact, he tracked, he smiled and laughed and responded to us in all of the right ways. He loved to be held and cuddled and snuggled.

What did I miss? What did I dismiss? I have racked my brain thinking back.

He had a very sensitive startle reaction (he would cry every time Gary sneezed – it’s a loud sneeze, but still), he hated tummy time, he walked at 10 months but didn’t talk until after 16, he was a tip-toe walker, he couldn’t tolerate loud noises and was very sensitive to sound. But that’s it and except for a sensitive tummy and some digestive issues, he was an easy baby; a great sleeper, not overly fussy, happy and content. We considered ourselves fortunate as he had been methamphetamine exposed the majority of his birth mother’s pregnancy and despite a rough start, was absolutely thriving.

As a toddler, we were concerned about his delayed speech so we set up early intervention services for him and he had speech and language therapy for a year. He was displaying some rigid behaviors and inflexibility and had a need for control and had some obsessive “quirks” but truthfully, that describes me too (I’m getting better, truly  I am) and it was all easily managed. He otherwise continued to be the happy, healthy, delightful little guy who was advanced in so many other ways. He blew us away with his early ability to focus on and figure things out, to do complicated puzzles, find hidden pictures with little effort. He was a mover and a shaker.

Truthfully, my husband noticed more than I did. I remember him saying “have you noticed how his cars always have to be lined up perfectly and are always arranged by color? Do you see how upset he gets when he can’t get things to work just how he wants or when things are moved around or messed up? His temper concerns me a little.”

I would dismiss it saying, “oh he just has a bit of a temper and he likes to have things just so.” Now, it sounds so obvious. Why does hindsight always sound so obvious.

In retrospect, there were whispers of concern in the back of my mind and I even read a bit about Autism but so many things didn’t fit that I just put it away and dismissed it.

I didn’t read enough.

It wasn’t until pre-school that we started noticing social difficulties and trouble relating with peers. He was easily overwhelmed and overstimulated in a large groups of children. He could be aggressive and was often too rough. We had him in a Montessori type of pre-school setting and it was a disaster for him. It was his sweet teacher who finally pulled me aside and said very honestly “I don’t know how to work with him. I love him and I want what is best for him but I don’t think he is getting what he needs here.” That was the first “bubble burst” and prompted an initial round of testing last fall and my first true inclination that something wasn’t quite right.

The testing we had done was academic and behavioral as it related to an academic setting. His cognitive levels were off the charts. I will never forget the testing process or the amazement of the testing administrator as she would place a series of picture cards in front of him in a particular order, telling him he had several seconds to look at them before she would take them, mix them up and give them back to him for him to put in order again. He would barely glance at them and then shove them back to her, look right at her and say “I ready”. Wanting an accurate test result, she would say, no, Nathan, you can take a little more time.

“No, I ready.”

So she gave him back the cards and in a matter of seconds they were all in exactly the same order she had initially placed them.

The pictures got more and more complicated but the results were the same.

“I ready.”

Eventually, she ran out of cards. “I don’t have any higher level tests with me to give him, we don’t usually need them at this type of testing.”

Concern came when she would give him auditory tests like a simple sequence of words or numbers and ask him to repeat them.

“Nathan, can you please repeat these numbers for me. One. Eight. Four. Two. Six.”

“One. Eight. Four …… what dat nex one? Mommy, what dat nex one. I dohn no.”

And then he would refuse to do it at all because he knew he couldn’t.

Precious boy.

And so the testing continued and we eventually ended up with a diagnoses of Expressive Language Delay and Sensory Processing Disorder and an IEP including speech and language and behavioral and social goals.

Still no Autism anywhere on the radar.

His diagnoses qualified him for specialized services and we enrolled him in a special needs pre-school. He did much better in a setting with only 11 other children a teacher and three aides but he still struggled and our concern grew, especially with kindergarten and a mainstream classroom of 28 kids on the horizon. So, I made an appointment with Wendy, our older son David’s incredible behavioral health caseworker whose expertise and opinion I value greatly. Her evaluation led us to the office of the Child Psychiatrist who observed and interacted with Nathan, reviewed his IEP, asked me just the right questions and then leaned forward, looked at me and said “you aren’t going to like me but your son has autism.”

And there it was. Autism. Your son has autism.

I took in what he said as I held my wiggly five-year-old in my arms. Innocent and unaware of what was hanging in the air. Impatiently rubbing my face and poking at me to get my attention; “mommy I ready to go home. We go home now.”

We went home and I began reading. I wasn’t convinced. So much didn’t fit.

And then I read about High-Functioning Autism and a picture perfect profile of my son began to emerge from the pages. The pieces came together and they did fit. Autism.

Because he didn’t fit the typical signs of Autism, it was easy to dismiss and to simply assume he was just a bit type-A; believe me, type-A is familiar around here. We accepted the “unique” and incredible things he did as a sign that he was probably gifted and advanced. We were dealing with his speech issues and used a lot of signing to communicate with him. We were patient, certain the speech would come with time.

What we dismissed as just personality, a bit of OCD and a little quirkiness were truly the signs of high functioning autism. We just didn’t know enough about it to suspect it. Or we didn’t want to see it.

I didn’t want to see it.

In the book “Children with High-Functioning Autism” author Claire E. Hughes-Lynch talks about her journey with her own daughter’s diagnoses; “I can look back now and say, ‘Ahhhh, so that was the autism coming out.’ But at the time … I have backgrounds in both gifted education and special education, and my gifted education experience means I tend to look at kids from a strengths-based perspective. I see things that could be the germ of a talent or activities that show promise of great thinking … I tend not to look at things from a deficit view.”

This really resonated with me. I have always been amazed by my son and chose to focus only on the strengths and great thinking that I saw in him. I found ways to explain away the other things I saw.

In hind sight, I think we missed some of the signs with Nathan because we were dealing with so much with Sara and David. They had come back to us when Nathan was about 18 months old and we had hit the ground running with their healing and trauma therapy. Nathan was our “normal” kid … whatever that means. Sara and David’s psychological wounds and needs were so extreme that I’m pretty sure I just didn’t have it in me to handle the realization that something could be wrong with my precious baby too.

That isn’t pretty but it is real and it is honest.

God’s timing amazes me. Always. But never more so than now. He restored our family at exactly the time He intended. He knew that we would walk with Sara and David through some very dark and terrifying places in the process of their healing and restoration. He knew that they were going to need every bit of us for that journey.

He also knew that it would ultimately be the end of me.

My reliance on Him who sustains, restores, redeems and strengthens me made absolute under the weight of my own weakness.

Complete surrender.

Then, and only then, would I be ready to hear and accept the words “your son has autism”.

For my strength is made perfect in weakness.

My son has autism.

My son has autism and he is still the exact same funny, sweet, incredible little boy he was before the word ever entered our lives. In fact, so many of the things that I love about him, the things that make him unique, that make him Nathan, are the “autistic things”. He is wired differently, yes. But he is fearfully and wonderfully made. Created perfectly for the work God has for him to do.

He is truly a gift. He came to us in such a miraculous way and I have always been so thankful to God for entrusting me to be his mama. But now more than ever before, I am humbled and grateful that my husband and I have the privilege of raising this precious boy.

My son has autism and he will always know love and acceptance and the promise and hope his future holds.

My son has autism. And it’s okay. That is real life.

God has a beautiful plan for him and we will be blessed to watch it unfold. I hope you will join us for the journey ahead.

Trust in the Lord with all your heart and lean not on your own understanding;
 in all your ways submit to him, and he will make your paths straight. Proverbs 3:5-6