What Autism Has Taught Me…So Far

AUTISM (1)
momma and wesley_edited-2
wes mom cuddling_edited-1
wes couch maverick_edited-1mom wes hugging_edited-1
It was a Tuesday morning.  I was 7 months pregnant with Sawyer and having trouble getting comfortable sitting on the playroom mat of Wesley’s OT room. I watched as Wes bravely dove into the ball pit to retrieve the rings his therapist had hidden. When he crawled through the tunnel with only minor hesitation, I was reminded of how far he had come.

Only 6 months earlier Wesley spent his entire hour-long session kicking and screaming and refusing to cooperate with any of the activities.  He was physically uncomfortable on the swings, nervous to crawl through the tunnels and stubborn about trying new games. But now…now I was watching my little boy become braver by the minute.  He was blossoming. I remember rubbing my hand across my growing belly and beaming at him with pride.  This was just a phase, I convinced myself.

On the other side of the room was another little boy, Max. His therapist was doing her best to coax him through the tunnel but there seemed to be no convincing him.

Max’s mom, Maria, walked in just as he was sitting on the ground in protest. She didn’t have her usual smile and I could see the faintest trace of tears in her eyes.

Maria and I had become friends.  You get to know the other moms when you spend 10 hours in occupational therapy with your son every week.  Maria was my favorite mom.  She was strong. Resolved. Calm. Kind. And proactive.  She had three more children at home. Max was her youngest and the same age as Wesley.  Our boys seemed to have a lot in common.  Neither of them was great at co-play but they both enjoyed having their sessions in the same room together.

Is everything okay?  I asked Maria softly.
She nodded slowly, not taking her gaze off Max.
I waited a minute and asked her again.
Maria, are you sure?
Still not shifting her gaze she replied.
They say Max has autism.

I was silent. Unsure of how to respond. Not fully processing the bomb she had just dropped.
But he’s only 2.5
Those were the first words I could force from my lips.  Those confused, unsympathetic and certainly not reassuring words…

Yes, was all she said in response.

Another minute passed as I watched her closely out of the corner of my eye, willing words of encouragement and hope to come to me.  I fidgeted awkwardly and blurted out in desperation:  Well, they must be wrong.  Look at him. Look how great he’s doing. Look how much he’s talking and how brave he’s getting.  And he’s just so polite and sweet and he looks me right in the eye when I talk to him.  They must be wrong.  They have to be.

I had gotten to know Max over the previous 6 months.  I knew his triggers and his strengths and his challenges and his smile because I’d seen him complete the same exercises along side Wesley—sometimes more advanced than Wes.

If Max had autism, then Wesley…I couldn’t allow myself to complete the thought.

I looked anxiously around the room, almost expecting a woman in a lab coat to walk in, take me to the side and blast me with the same news.  But there was no woman in a lab coat. And the news didn’t come.  Not that day. Or the next. Or the week after that. Or for another 3 years.

At the end of the session I looked to Maria with the only reassuring words I had mustered up all day: Max is perfect. Absolutely perfect, Maria.  And I meant every word.  She gave me a half smile and finally looked into my eyes.  I nodded and walked out the door, my heart crushed for her and this day that would certainly be engrained in her mom-memory forever.

I didn’t stay in touch with Maria once the boys moved on to preschool–I’ve always been bad at that. I’m not sure how things progressed for Max and what came of his diagnosis.  But for the next 3 years I continued to convince myself that they had been wrong.  I needed them to be wrong…for Max…for Wes…for our family.

It wasn’t until this summer, when I was given the same task of sharing the same news with those in our life that I became sad about my interaction with Maria years earlier.  How insensitive.  How naive.  How selfish my response had been to HER experience. It took me being on the other side before I could see this.

……

It went down nothing like I had read it would happen.
At least not at first.
I didn’t see it coming but I can’t say that I was blindsided.
I didn’t cry.  I didn’t get angry.  I’m not even sure I felt overwhelmed…at first.
I heard every word the doctor said. I never zoned out. I asked all the right questions.  Nodded my head in agreement. Took some notes.  Smiled, and thanked the doctor for all the time he had devoted to our family and our son.

Since the day Wesley was born I have been an obsessively proactive parent (maybe to a fault).  I was determined to get him the best services and medical attention, the most qualified therapists and most patient teachers. When we walked out of that doctor’s office I resolved I would do the same.  Certainly I would be that mom who bought every book, found every website, joined all the message boards and became the ultimate advocate for my child.  This would be my life now.

But that wasn’t what happened.

Instead I got home and I froze.
Time stood still.  Days blurred into weeks as our summer came to a close. I don’t think I was depressed but I also didn’t want to leave the house.  I just wanted to stay home and hug my boys all day.  I was tired of obligations and explanations and accommodations.

What had previously been every day life suddenly felt like too much, it was too real. And this once proactive and advocating mother felt overwhelmed and unqualified for the new tasks I knew we had ahead of us.  I cringed at the thought of how much I would have to fail him before I would get something right—and I wasn’t looking forward to that part.

I’ve since read my emotions and my experience during this early stage of diagnosis in the words of dozens upon dozens of other mothers out there; each of them capturing so perfectly those thoughts in my heart that I’ve have had trouble putting onto paper.

I think it’s because I’m being extra careful—that’s why I’m having trouble finding my words.  Everything is still sinking in and I’ve been too nervous to share my heart, because my heart isn’t 100% certain of how it feels yet.  And scared that something that has been so real for our family may be marginalized by someone not willing to see our perspective.  Too nervous to share my fears, because maybe those fears will diminish hope in someone else on this same journey.  Not sure where I stand on treatment methods, on how to advocate, on how to introduce Wesley and his autism to his growing world…

But while there’s so much I still don’t know as we embark on this journey, there are some things I already know for certain.

What Things Autism Has Taught Us So Far:

Stop apologizing. 

That was the first rule I made when my doctor told me the diagnosis.  No more “I’m sorries”.  I’ve spent the last 5 years apologizing for my son…how horrible is that?!

I’m sorry he isn’t sharing. I’m sorry he didn’t say thank you. I’m sorry he won’t sit still. I’m sorry he’s having trouble waiting in line. I’m sorry he’s being so loud. I’m sorry. I’m sorry. I’m sorry.

I cringe when I think of the shame I projected onto him in an effort to help him fit better into a mold I had created in my mind of what my quintessential child would most certainly be like. A few weeks after our doctor gave us the news, I felt that mold shatter into a million tiny pieces. And I remember feeling relief.  Screw the mold.

Sometimes we need to break the rules.

It’s okay to fight for our children. To champion for them. To teach them that rules are made to be followed, but sometimes we aren’t born to fit into all the rules. Sometimes the best decisions we can make for our children are the very decisions we know that no one else will agree with or support. And that’s okay.

There is beauty in brokenness.

Sure it’s not always how we imagined our fairy tale would play out back when we were young and naive and idealistic. Sure it’s not picture perfect. Sure we’re a bit broken. But it’s our broken. And the healing has made us stronger–has made us beautiful even. Beauty in brokenness–that’s what my dear friend always reminds me–beauty in brokenness.

Trust your guts. 

You’ll receive so much advice. Much of it will be awesome.  But great advice or not, it doesn’t mean it will be what’s best for your child.  I’ve learned that there’s a saying in this community: if you know one child with autism then you know one child with autism.  And that’s the truth.  So trust that voice in your head that’s whispering what only you know to be true for your child.

Fail.

Sometimes failing our children is the greatest lesson and best gift we can give them.  We’re doing our children a favor when me mess up.  Especially since chances are, our children are who we’ll fail most.  We’re creating opportunities to model humility and to teach them about forgiveness in action–to teach them that failure is acceptable AND expected.  Imperfection is a strength and a blessing, not a weakness—and I worry that not enough children are learning this today. 

Hold tight to the people who really “see” your child.

While it can often be difficult to relate to or understand Wes, he is certainly easy to love. I know we are incredibly fortunate to be surrounded by so many who take the time to show him love and compassion.  And I feel especially blessed for certain families I know the Lord has sent to us—those people who really “see” Wes, who get him, who love him just as he is.  There’s something extra special about having friends who love your child as if he were their own—and we hold tight to those friends and that support system. It’s going to be so important for Wes to have loved ones in his camp who are outside of his family.

Get help.

Don’t just accept help, seek it out.  This has been the hardest part for me and I share this advice knowing I still need to learn to take it myself.  We can’t do this alone.  And there really is so much help out there.  If you’re feeling lost, start here—click on the state you live in for an extensive list of categorized services for children on the spectrum.

Love is always the answer.

I often feel like nothing I do to help him will ever be enough.  I will always be letting him down.  But then I remember that he never asked me to change him.  He just needs me to love him.  And guide him through this journey with his special needs.  And I realized that’s the job of every mother.  Because whether our child has a diagnosis or not, ALL of our children have special needs.

……

Read this post if you’d like to get to know Wesley better.
And read my first attempt to describe this journey here.
New here? This could be a good place to start.

Ashley Stock
I'm Ashley. Sometimes I craft, occasionally I cook, everyday I write, and I'm always Momma. This is my blog. I keep it real while still seeing the rainbows and butterflies in all of life's lessons.
Ashley Stock
Ashley Stock
Ashley Stock

Latest posts by Ashley Stock (see all)

Ashley Stock

Comments

  1. Amy Poyer says:

    Haven’t commented in a while Ash but just wanted to say that you said it all perfectly. Thanks for writing such an honest and beautiful post. Wesley is lucky to have you as his Momma, and it sounds like everyone around him is lucky to have him in their lives as well. Love ya bud.

  2. Really awesome post ash- beautiful pictures, heart felt inspiring words— I love you and think you’re an awesome mom! Lucky to call you my friend and learn from you constantly. I hate all the things I’ve surely said or done wrong regarding this situation. I have nothing but love for you, Wes, your whole family!

  3. Wow! I’ve been a follower if your blog for a few years now and I know that this couldn’t have been easy to post. Thank you so much for sharing. I’m reading this as I put my 2-year old daughter to sleep. We all have struggles and fears and hopes for our children. Sometimes things don’t turn out how you’d expect them too, but I’ve learned to ride the wave because no matter what our kids are the most important treasures in our lives. I am glad you decided to share your story because no ever really wants to talk about what people may perceive as a fault in their family. But it’s not a fault. It’s just part of who your son is. I wish you all the best in moving forward with this new footnote in your story. I wish you patience, because what parent doesn’t need that, and faith.

  4. Denise Garcia says:

    Our family friend writes the blog “not the former things” which is where she shares her families experience with autism & her awesome children. Please check it out for encouragement <3

  5. you are an incredible mom. it’s so clear even just through your posts! you are the best thing for that boy. and you are doing a great job!! keep doing what you’re doing. you’re awesome ashley!!

  6. Hi Ashley! I am a reader of what, like 3 1/2 ish years and I just want to tell you I love you and your love for your kids! I wish you the best of luck in navigating through this “new” journey with your little Wes!

  7. Jessica A says:

    Love this post & it hits home for me, being a mother of a son with Autism. Thank you for sharing!

  8. Ashle Potter says:

    I never comment, but I knew I should when I read the last sentence that you wrote. You are so right, all of our children do have special needs. They feel loved in different ways, they have different struggles and fears, they have different likes and interests and God bless you for figuring that out for your sweet boy. You have given your son a beautiful gift by accommodating and understanding his specific needs. No one else could mother him as well as you. You’re the perfect match for one another and I pray you continue to have confidence and strength as you navigate through this journey. You said to your friend, Maria a few years ago that her son is absolutely perfect. I’ll say the same to you – Wesley is absolutely, 100% perfect as he is. You’re doing a great job, momma. One day you’ll look at your son and know that you did it right. You gave him what he needed to become the best version of who he is. You’ll do the same for your other precious boy too. And we will all be cheering you on! I love your blog and I find you so inspirational as a mother. Xo

  9. Christine says:

    You have a way with words…. Thanks for sharing!

  10. So beautiful, thank you for sharing!

  11. I started following your blog a few years ago when I fell in love with your honest writing style. My son was diagnosed with ASD earlier this year so I was glad to see you write so rawly about this subject. It’s hard to do, but it’s so important for others to be aware that this “new normal” is becoming increasingly common for more and more families. It can be a tough ride for us mommas, keep hanging in there!

  12. I couldn’t agree more with your statement that love is always the answer. Wesley has two great, loving parents who will be there with him and for him. And, in the end, that’s all that really matters. Because of you, he will lead a healthy and happy life. I have no doubt. 🙂

  13. We have gone through this very same journey with our son and I know it can feel very lonely. Please know that there are other mommas and little boys (and girls) walking the same road with you. I have been a long-time reader. If you ever feel the need to connect to another mom who has been there, please reach out. That was the hardest thing for me to learn, to reach out and say, “Hey, I need help with this.” I would be happy to be an ear for you.

  14. i hope you never stop blogging. never stop writing and sharing and expressing your thoughts and emotions and experiences. as a less-experienced mom of an almost 1 yr old, i truly look up to you and your posts and your amazing momma life that you bravely share with the rest of the world. having worked in the medical field (and in a children’s hospital), i am not blind to all the sickness, the diseases, the struggles that kids and their parents go through. and it has always been in the back of my mind now that i’m starting this journey of parenthood myself (with my amazing husband). i really do appreciate your honesty – as a lot of others do too, obviously 🙂

  15. Jen staffeldt says:

    Wow – thank you for sharing and your bravery! Bravery to put it out there and know that your words will help others, and in time, help yourself.

    I loved how you ended you piece – that all children have special needs. While my 4 yr old son doesn’t have autism, he is loud, has little patience and has trouble sitting still often – something that sounds a lot like your precious Wes.

    From reading your blog over the past 2 years – not only are you the best mom for Wes, you are really an inspiration to all of us to live our most authentic lives (especially in the midst of challenges). But, as you allude to above, God is in control and has already equipped you with what Wes and Sawyer need. Best of luck to you, Ashley!

  16. I have been a silent reader for years now and I feel like I know you and your little boys even though I am about 3,000 miles across the country! This was a beautiful, brave post and I know that Wesley is in the best of hands with you and your husband as his parents. God bless and best wishes.

  17. I just recently started reading your blog. I loved the post about getting to know Wes- he sounds a lot like my son. I know (from personal experience) putting out there that your son has special needs can be tough. My little one (3 yrs old) was diagnosed in January….and it has taken some time for me to say autism without the word getting stuck in my throat. Time has helped me through this. This post was amazing to read- yes I feel alone at times- but reading this reminds me that I’m not. Thank you for being brave.

  18. We are going through the same thing with my son and haven’t told a soul. I couldn’t quite explain it to my husband but I just need to figure it out in my heart before I open it up to everyone else. I know he will be okay and I know it could be worse but the weight that I feel at times is suffocating because I don’t feel like I am enough to handle this. Thank you for posting.

  19. Thanks so much for such an honest post, and beautiful pictures as well. There is so much to learn through Autism, and such a strong support community as well!

  20. I feel as you did with Maria and don’t know what to say, but I just wanted to let you know your family is in my thoughts.

  21. I know exactly how you are feeling – you put it into words so beautifully. I’ve learned to stop apologizing for Wyatt too. It’s not his fault, and it’s not mine. You are such a good momma and I saw so much of our story in yours. I’d love to talk to you sometime if you’re up for it. xo sending love to you and “baby W” 🙂

  22. Wow! Ashley, you have a way with words. Although I can’t understand exactly where you are coming from I can appreciate the courage and strength it took to write this. And it helps me to remember that we all have struggles in different ways and that’s on. I love that you have this little slice of the world to feel safe to write this. Thank for always being open and honest and sharing your truth. Life is hard. Kids are hard. But we all get through it together and we are all learning something from each other. You have reminded me that even though times may seem tough, life will go on.

  23. Just in case you haven’t come across this yet: http://momastery.com/blog/2014/03/18/child-gifted-talented-single-one/

    I can tell you from experience that you’ll continue to look back & be blown away by how far you all have come! Just keep swimming… <3

  24. thanks especially for the very last phrase that all our children have special needs. just as they are all different so are their needs. thank you

  25. You are doing a GREAT job!!! I teach 3rd-5th grade students with mild to moderate autism in the LA area, and even at the upper elementary level, I see my students make huge progress and meet new goals all the time (it’s not ALL about early intervention, though that does make a big difference). They are incredible and I’m so happy to have the chance to work with them! However, I know my role in their lives is limited compared to that of their parents. My students who make especially amazing accomplishments also have very supportive and persistent families who do not give up. Wes is so lucky to have that. Anyways, if you ever have any school or IEP related questions, feel free to e-mail me… I know how confusing it can be to navigate the public school system, especially for parents who have children receiving special education services! ~Caitlin

  26. A fellow ASD mom here, just cheering you on from here. We’re on such a hard, but beautiful journey. Glad to know another mom on the same road!

  27. God made all children to His making. You are a wonderful mother and you are doing a great job. Love will heal so many things. So happy you have great support. Love how you are handling this step in your life. God will see you through this as He wouldn’t give this special boy to you if He didn’t have a plan.

    God Bless

  28. Karla Kelly-Wood says:

    Wow. So touching. You truly write from deep in your heart.
    The love you have for your family and friends comes across so clearly in your printed words. Your children are blessed to have you for a Mother. Like you told your friend, Wesley is perfect.

  29. Wes is lucky to have such a great mom. You were always meant to be his! Beautifully written post. It couldn’t have been an easy one to write but you put it into words perfectly.

  30. Gorgeous picks. I stopped to read the article because it reminded my of snuggling with my little guy that has ASD. 🙂

  31. Thanks for this post. I have been following your blog since Wesley was a baby. This post brought tears to my eyes. I understand why you are afraid to share your thoughts about this online, but I hope you continue to do so, because you really get the heart of what so many families go through.

  32. Just beautiful Ashley, you are a great human being on all levels, especially on the mom level. Thanks for sharing something hard to share. Your words are healers for many. We love Wes, we love all of you

  33. You are an amazing mama. Thanks for sharing your heart always.

  34. wesley is lucky to have you for his momma! thanks for always sharing your heart! xoxo

  35. Just want to say…I understand. With a whole heart. My oldest son was diagnosed 5 years ago, and just want to send love. I remember being a rookie in this world. I’ve made a lot of mistakes, a lot of amazing mama friends who are like sisters, spent a LOT of money on therapies and interventions…in the end, it’s love. Yes, just love and time and patience.

    I wrote this the day my son was diagnosed: http://www.momnivores-dilemma.com/whos-afraid-of-big-bad-autism-label/…there’s a lot of my heart on the site. It’s kind of a mess after I switched platforms…but the stories are there. If you ever need to hear from a veteran….love to you.

    My best,
    Nicolette

  36. Thanks for sharing this story. My son was diagnosed this summer. He’s three and I’ve been saying I’m sorry too much as well. I’ve been slowly blogging about this as well.

  37. I recently have felt overwhelmed by my son’s inability to control himself in social situations and I have found myself apologizing too often to other parents and teachers for incidents. It really wore me down and I found myself being angry. Everything in this post is perfection and helped me refocus my mission as his Mom. It helps to know I’m not alone…absolute perfection. Thank-you!

  38. From one autism momma to another, this was absolutely beautiful – and perfect. Thank you.

  39. Hi Ashley,
    Beautiful words and a beautiful story. I to, am at a place with my daughter where I know something isn’t quite right. Our insurance doesn’t cover OT and at this time an eval is too expensive…did you find the OT eval beneficial? Did you get a lot of information from it?
    TIA
    Kelly 🙂

  40. Alysha-Lynn says:

    What a wonderful and educational blog post. I believe everyone can appreciate and learn from this post in some way. I am in university currently to become a teacher one day and from reading blogs such as yours I know how important it is for not only other parents to be aware of this topic but also the people who effect children outside of home. Parents, therapists, teachers, coaches; we all play a role in how a child grows.

  41. This is so beautifully written. The part that resonated the most with me was don’t apologize. I think as moms we tend to do this all the time, no matter who your child is. We always feel like our kids should hug or kiss people goodbye and apologize if they don’t. I learned (and I thank God for this everyday) that my kids have their own personal space. If I don’t want my space invaded then why should they have theirs. You are doing such a great job with both of your boys. For those who have followed your blog and your journey we can all see how far he has come. I am proud of you as a mom to a mom. Pat yourself on the back because you are doing amazing and it shows in every hug, kiss and connection you get. xx

  42. Thank you for this post. My son has a disease (TSC) where 60% of children w this disease has autism. He is only 15 months old, but I see so many of these lessons as lessons I need to learn. I find myself already apologizing for him. I’m sorry he doesn’t respond to his name; I’m sorry he mouths everything to learn, I’m sorry he bites. He’s too young at this point to diagnosis even though he has most 12 month old signs, but I still can’t imagine the day the diagnosis comes. I’m sure I’ll be a pile of tears.

    Thanks for sharing honestly. It speaks to this momma’s heart.

  43. This is a beautiful post. As a mom who is struggling with bipolar disorder, I feel the points that you highlighted are relevant to me too… much love and best wishes on your journey.

  44. Please email me

    Amanda Armer, M.Ed., BCBA

  45. I’m not a mom, in fact I’m a 19 year old girl, but I just wanted to say how touched I am by your words and resilience. Being away at university has taught me so much about my parents’ love for me, and seeing such a loving, dedicated mom makes my heart smile. I am sure every day is not a wall in the park for you, but just know that the world is a better place because of the way you love and treat your son. He will value this so much when he’s older. Thank you for sharing your story. It’s brightened my bad day, and has reminded me of how truly special our parents are. All the best.

  46. Danielle Richards says:

    Thank you for the post…….as a mom of 6 with our youngest being autistic, it’s nice to hear someone else has stopped saying “I’m sorry”, I can totally relate. Jacks diagnosis was a hard pill to swallow , but it has forever changed me in the best way, a way I never imagined. I see the world in a different light now, and for that I am blessed.

  47. Hi Ashley,
    I just stumbled upon your blog oddly enough about another post about creating volume in your hair. Very excited to try it!! I also noticed this submission which very much peaked my interest as we have a 6 yr old son as well who has been diagnosed with autism when he was 23 months old. I remember the day he was diagnosed as if it happened yesterday and the journey we have taken up until this point. I can relate so much to all the things that you wrote, from your initial reaction, to other’s reactions to how it has changed my perceptions and reactions to other’s when we are with our son and even when we are not. I didn’t get a chance to read all the comments above and I don’t know if it was mentioned or not, but after our child was diagnosed, unlike yourself I did go out and buy every single book I could find about Autism. After skimming through all of them I felt helpless and frustrated, there were no answers:( I then called an old classmate from high school who I had learned a few years before our own son’s diagnosis that she had twin boys diagnosed with Autism. She told me that she didn’t read or pay attention to any books other than one called the Son-Rise. I immediately hung up the phone and googled the title, ordered it and read it in less than two days. It is about a boy born in the 70’s diagnosed with Autism and now cured thanks to his amazing parents!! That’s right, CURED!! My husband and I went to the Autism Treatment Centre in Sheffield, MA and did the start up program and then we had an individual (Jonathan Levy) trained by the Son-Rise program come to our home to work with our family. It was the greatest experience of our lives. If you haven’t yet, check out this amazing program. It is worth every penny and more. http://www.autismtreatmentcenter.org/contents/about_son-rise/what_is_the_son-rise_program.php

  48. As a mother and someone who has worked with children with autism (& their parents) for over 10 years, you expressed your feelings brilliantly. None of my children are on the spectrum, so in order to empathize with parents who do, and in order to do my job better, I find it helpful to read post like this one to better understand what parents of children with autism are feeling and going through. Thank you for sharing… Wesley is lucky you have you and you him.

    xx Ashleigh
    http://poppysaysit.blogspot.com

Trackbacks

Leave a Comment

*