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-13

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.

Nathan-15

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.

Nathan-16

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.

Nathan-17

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.

Nathan-7

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.

Nathan-6Truthfully, 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.

Nathan-11

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.

Swimming-12

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.”

Nathan-Adoption-Day-4

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.

Nathan-8

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.

Nathan-10

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

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37 thoughts on “In Real Life, There is Autism

  1. apuginthekitchen

    I am very sorry to hear about the diagnosis but Nathan was intended to be with your family and he will be just fine, I know it. I know what you speak of because my sister is autistic, displaying many of the same traits as Nathan but she is not high functioning, she is the bravest person I know. She is an adult now and when she was young autism was not known, the schools didn’t really know what to do with her, she bravely made it through school, graduating and even taking some courses at the local community college. She goes to work every day and is an exemplary employee, but she is not like everyone else, but thats ok she is my sister and I love and understand. You are very lucky that Nathan can benefit from the strides that have been made in the treatment of autism. He sounds like a wonderful, smart, sweet boy who has a loving and supportive family. I know he will be do well, how could he not with such an amazing, loving and grounded family. Praying for you, your family and Nathan.

    Reply
    1. Welcome Company with Danielle Post author

      Suzanne, thank you so much for sharing a bit of your sister’s story with me. It is obvious how proud you are of her and how much you love her. She really sounds like an amazing young woman with such determination and confidence. We are so fortunate and blessed that we will be able to provide Nathan with the very best services to maximize his strengths and help him learn to cope with and manage his unique challenges. People like your sister have paved the way, making it easier for our children now and for us as parents. Awareness has been raised and hopefully with that so has compassion and understanding. He is a wonderful and very sweet boy and I wouldn’t change a thing about him. He will do well, like your sister and will continue to open doors for the generations that come after. Thank you again. Your message meant so much to me.

      Reply
  2. Clanmother

    This is a remarkable post. Your ability to share your concerns and unequivocal love for your children has been the common thread throughout your posts. Nathan has been blessed by your love. Now, the real adventure begins. Your journey is not for the fainthearted, but I believe that you will experience a greater understanding of the human spirit in the coming months and years. I look forward to following your blog and the ongoing dialogue.

    Reply
    1. Welcome Company with Danielle Post author

      Thank you Rebecca. I need to catch up on your blog, I know I have missed quite a bit of your wonderful posts and your thought and insight. Your words always give me the opportunity to stretch my thinking and I so need that! You are right, our journey will be challenging but with a foundation of faith and the love we have for this incredible child, it will be filled with victories and joy. We will be fortunate as his parents to see how far he will go and what his little spirit can do. Thank you so much for following along and for your friendship and support through your lovely comments. It is definitely a new chapter and I am looking forward to sharing it and hopefully offering encouragement and a deeper understanding along the way.

      Reply
  3. tina5458

    hello I am the mother of a son who is 27. Chris has autism….Chris is 27 and was not diagnosed till he was 8. Back then no one knew. So you have an early start and you never missed anything. I have felt all the things you are feeling. My son has a job at Target part time. He has tried driving and decided he does not think it’s for him. He cooks and takes care of most of his own needs without prompting. Will he ever marry….only God can answer that. He has surpassed all the goal and my what ifs. So I never say never not even now.

    Reply
    1. Welcome Company with Danielle Post author

      Hello and thank you so much for stopping by and for sharing a bit about your son and your own journey with autism. Thank you also for the encouragement. I am so glad your boy is doing so well and you are right, never say never. God may just bring the perfect person for him when you least expect it. Blessings to you. Visit again!!

      Reply
  4. Instant Mama

    What a big word for such a cutie! You got me all teary with the last part, talking about God’s timing. It’s so true. And He put you together because not only does he need you, but you need him. And perhaps He allowed you to “miss it” so you could really fall in love with your son, no labels attached. Blessings as your journey continues.

    Reply
    1. fawn

      I like the post from Instant Mama…kind of like you with your clan….instant family. You, out of all the people I have met, are equipped to handle this. You are a living example of unconditional love and your kids are the fortunate recipients. I’m glad you are so crazy in love with your Nathan. Both he and you deserve it!

      Reply
      1. Welcome Company with Danielle Post author

        You should visit her blog, Fawn. She has a beautiful story and an amazing heart. Thank you so much for the encouragement and for always saying the sweetest things. You are truly such a great friend and I love you. You are right, I am crazy in love with Nathan. He’s amazing. I’ve always loved on him a lot but since last week I can’t stop hugging him and kissing those chubby cheeks. I think I’m starting to drive him a little crazy. 🙂

        Reply
    2. Welcome Company with Danielle Post author

      It is a big word and I think the label is what I struggle with most. I never want my kids to feel they are defined by a label. It is only a part of him and we will make sure he always know that. I think you are so right, God allowed us to fall so in love with our child that nothing else would really matter. He also gave us the eyes and heart to see so many of Nathan’s behaviors and tendencies as strengths to be nurtured. Hope things are going well with your beautiful family!

      Reply
  5. gotasté

    I too believe that god has a beautiful plan for him and someday, magic will happen.
    From,
    An introvert who is still searching for a reason to live.

    Reply
    1. gotasté

      Dani, I couldn’t get this post out of my head because there is something that bothers me and I finally found out what it is. Honestly, I can’t agree with the medical explanation of people with such characters. They are different just like each of us and they are the same like everyone else. People with such characters has the kind of determination and focus that are many times stronger than others. Once they are able to find something that they love to do, you can expect perfect results. So I wonder if we should categories Nathan as what the medical world has put a stamp on or are we not seeing the making of a genius.

      Reply
      1. Welcome Company with Danielle Post author

        Danny, I couldn’t agree with you more. The label bothers me too. I don’t ever want my children to be defined by a label. You said it perfectly. Nathan is uniquely gifted and was created so with a purpose. Autism awareness is increasing and with it understanding. We will make certain our son is able to embrace and develop his strengths and we will fight to make sure he is given the opportunity to do so in a positive and supportive learning environment. We will help him learn to cope with and manage his challenges but we will never expect him to be anything other than who he is. I am in awe of him. Everyday. And I wouldn’t change a thing about him. Hopefully, sharing his story and our journey will continue to raise awareness, acceptance and understanding. We are all unique and that is a beautiful thing! Thank you so much for sharing your thoughts. You are so right.

        Reply
    2. Welcome Company with Danielle Post author

      Thank you Danny! God does indeed have a beautiful plan for him as He does for us all. I know his future is bright and he will do incredible things. Keep searching and seeking God’s will and direction for you and it will come. Sometimes it is hard to wait but is often in the waiting that we learn the most and grow closer to Him. I see you bravely reaching out with your wonderful blog and cooking. You recognize and accept a more introverted nature as a part of who you are but you push and challenge yourself to move beyond it. It is what we all must do in our own unique ways. Keep reaching!

      Reply
      1. gotasté

        Dani, I am touched by your words. These are the most lovely and encouraging words that I have heard about me. I am glad I started this blog so that I can come to know beautiful people like you. Thank you.

        Reply
  6. Dolly Rubiano

    Your words reverberate with me, “My son has autism. And it’s okay. That is real life.” I struggled to accept that for a long time. I might still be struggling.

    I have a daughter who also has autism. She is turning 20 in September. She was diagnosed at 2 1/2 and started with the ABA method with speech, behavioral and occupational therapies since then. As a young adult, she can cook, paint and care for herself but is still lacking in social and language skills. She can’t live alone. I worry for her future without me and my ex-husband, but for now she is surrounded by people who care for her and love her. Your son is fortunate to have you. I am separated from my daughter.

    I recently volunteered for a young family who has a 3 year old son with autism. They are doing the Son-Rise program for their son and it is totally opposite from the ABA method. I am unlearning all that I knew before and learning from scratch again. I am re-discovering my daughter through this little boy of an angel. Acceptance and patience. It is not easy but I know this little boy will help me through.

    Thank you for sharing Nathan with us!

    Reply
    1. Welcome Company with Danielle Post author

      Oh Dolly, I am so thankful to you for sharing a bit of your story and your daughter with me. It really means a lot to me. I can’t imagine how hard it must be for you to be separated from your daughter. I will be praying that you get to connect with her again very soon. It seems that they know so much more about autism now, particularly the varying range and unique needs of each child on the spectrum. You did the very best for your daughter. I am so thankful you have been blessed with this little boy in your life. You are right, acceptance and patience. We often ask why? in difficult situations. Why autism? I think the answer is just what you said. We all have a unique purpose on this earth. Perhaps part of the purpose of children like your daughter, the little boy in your life and my son having autism is to teach those around them acceptance and patience. That is a beautiful purpose. Blessings to you. Nathan’s birthday is in September too. It’s a good month.

      Reply
  7. Tracy Mahan

    You recognized the unique gifts and challenges of Nathan, you encouraged his strengths and sought out services for his needs. You have loved him completely and done exactly what he needed when he needed. You have nothing to look back on and feel bad about AT ALL. I (a mother of a severely autistic son) saw a few traits but thought he was way too social for autism, he isn’t a completely typical picture because he is uniquely him. You found out precisely when you needed to find out and from here you can move forward with more clarity about how to help him.

    Nathan is so blessed to be your son! I have no doubt he will get everything he needs and then some. Thank God for his loving parents and siblings who will be there to encourage and help him on his journey! We are here to help in any way we can, just let me know! WE LOVE YOU BREWERS!

    Reply
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  9. laurasmess

    Danielle. It’s hard to find adequate words to fill this box right now. You’re incredible… inspiring, strong and courageous. Your faith in our incredible God to bring strength, peace and guidance in this situation is so humbling. My brother has autism. He’s also high functioning; lots of the qualities that you described in Nathan are also present in Leo. I found it really difficult to accept at first, but you know what? He’s amazing, unique and beautiful. Autism is part of him, it makes him who is he is… there are strong points and weaker points, like the rest of us. His artistic ability is beyond his years. His language abilities aren’t really at his age level, but he’s happy with his life and we communicate well. Within the uncertainty, one thing is assured: God is in control. He is wise, strong and true, faithful and loving. I can tell that Nathan is amazing… he has a beautiful life ahead. He’s lucky to have you as a mother. Thank you for sharing this post with us. I’ll be praying for you guys xxx

    Reply
    1. Welcome Company with Danielle Post author

      Thank you so much Laura and thank you for telling me about your brother; he sounds just as you described him “amazing, unique and beautiful” just as my Nathan is. And autism is a part of who they are – the good and the challenging. I appreciate your prayers so much and your encouragement. Leo has a pretty incredible sister!

      Reply
      1. laurasmess

        Aw, thank you so much Danielle. Haha, Leo would hate that I called him beautiful, but he is!! In a true sense! 🙂 Like you said, if both Leo and Nathan weren’t autistic, they wouldn’t be the boys that they are today. Challenging, yes, but inspiring just the same. You know, I’m quite amazed (from reading the responses to your post) that so many of us lead lives touched by autism in some way. It’s more common than I thought. So glad that we could share together; thanks for being brave, strong and honest through all of this. It’s a privilege to be able to share this journey with you in a small way xx

        Reply
        1. Welcome Company with Danielle Post author

          I was so surprised by that too. I hope the more we talk about it and are open and honest and accepting that compassion and understanding for those who don’t quite “fit” into societal norms (in whatever way) will grow. I too am privileged to share this journey with you Laura. Even in a small way. Blessings to you and Leo!

          Reply
  10. Keep Calm and Eat On

    Danielle, you are a strong person, very strong. That does not mean nothing makes you sad but you have the ability to see the light that gives us hope. Those who read your blog will be influenced by how your strength and determination and most importantly, that little boy of yours. I do believe, Nathan was sent to you and your family for more reasons than known. God has plans for everyone.
    I work with children with special needs. I am a guidance counsellor. Children with autism can succeed in many ways and thats all we need to know. We need to concentrate on the positive.

    You are a wonderful person!

    Reply
    1. Welcome Company with Danielle Post author

      Thanks Debjani for the encouragement and kind words. I am so glad to know that you work with special needs kids. Incredible work and a blessing to both kids and parents. I do hope always that my blog will be an encouragement in different ways to whomever reads it. I am so glad to have connected with you in the blogging world and think that you are wonderful too. 🙂

      Reply
  11. cindy knoke

    This is so incredibly beautifully written and expressed you should submit for publication.
    I noticed all the “I should haves……” in the narrative. Why is it as a mom that I take no credit for my children’s achievements, they are their achievements after all, but full responsibility for any problems?
    I had a female physician client once who made some mothering mistake and asked me, “Have I ruined them for life?”
    And I said “NO! But remember as a mother, no matter how good you are, you will never think you are good enough.”
    You are a wonderful mother. You son is beautiful and will bless you. I bless you and your family.
    Happy Easter! ❤

    Reply

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