Confession #114 – This is a very different kind of post for me. But it’s something that’s been on my mind to do for a while.
I want to talk about Autism.
Because in addition to my food, I share a lot of my life through this blog.
And it’s World Autism Awareness Day.
You see, Autism is a big party of my world.
This is my son Max.
Max has Autism.
He’s also sweet, funny, and has a smile that I just die over.
But Autism is there, too.
And it’s hard.
We’ve had quite the journey to get to this point. For Max’s entire first year, he hit all of his milestones. And early. Did I ever tell you about the beach vacation we took when Max was five months old? The one where he was crawling in the sand when we totally thought he would be sitting still under an umbrella on our beach blanket? Yeah…we had no trouble with smiles, sitting, walking…and there was even a good amount of babbling there.
But then there just wasn’t.
It happened slowly over time…and I wish every day that I could go back and witness it again…because I should have seen it sooner than I did.
The signs were all there.
Loss of words.
Max seemed angry all the time. My sweet happy boy would now cry when I came home from work. No more hugs at the door.
But there were other things going on in our lives during those months. Max was constantly sick, so much so we pulled him from daycare and hired a nanny after he was hospitalized for a severe infection. My husband and I took so many days off that year, we both feared losing our jobs.
I guess we thought everything was happening due to the illnesses.
There was so much more going on…and hindsight will always haunt me.
But nobody else seemed concerned. Friends. Grandparents. His nanny. His pediatrician. Even when I filled out the M-CHAT, a standard Autism screening tool for toddlers, and a few of the questions came up as possible red flags, I was reassured that everything was fine. I was given a number for early intervention only because I pressed for it.
I wish I would have called that day.
Instead, I waited. I doubted myself. Questioned whether there was something wrong with me.
Max was 20 months old before I had early intervention come out for an evaluation.
Things were so bad by then, I was counting hours until the EI team arrived. This was my second child, and yet I had no idea how to parent him.
I knew when they loaded him up with services….and by the information they handed me that day…that we were headed for a diagnosis.
Although the diagnosis came over a year later, that day, the day those women came to my house, was probably the hardest day of my life. I was paralyzed with fear…and the tears wouldn’t stop. But it was also a pivotal moment in our journey…and I know now that those women saved us.
By the time his developmental pediatrician said the words, Max has Autism, I had already been through many stages of grief, and was well on my way to acceptance. And Max was thriving.
We already had a year of therapy underway…with the most amazing team of therapists. I quit my job to focus on Max’s treatment. We went gluten and dairy free. A fog lifted. Max found his words again…and built quite the vocabulary.
He started looking at us again.
He was happier.
We started to learn how to help him.
We still have challenges…lots of them. And life is difficult. But writing this post, I am reminded of just how far we have come.
I have only scratched the surface of everything I want to say.
My head is full of things I want to share.
So much so, I might need to start a second blog.
But for now, I am so thankful you let me get all of this out of my heart.
I want you readers to know...this blog has saved me in so many ways.
As I said before, I quit my job. My day is consumed with therapies, anxiety, aggression, doctors appointments, sensory disregulation, phone calls, research, tantrums, redirecting…and my nights are, well, usually awake in my son’s room because we still haven’t figured out how to sleep.
It’s been hard not to let Autism take over my world.
This blog, and all of you, came into my life at the perfect time.
And so I thank you.
You will never know how much you all mean to me.
As I said, I could go on and on, but I am going to end here…with this…just in case that second blog never happens.
For anyone out there who is questioning whether your child needs help…take action now. You are strong and you can do this. Bypass your pediatrician if you have to. Get an evaluation and go from there…as early intervention is so critical. Nothing bad can come out of information, I promise.
For anyone out there who is caring for a child with special needs….I see you. Now go find your tribe. Join a support group…even online if you have to, as I know it’s hard to get out. A few months ago, I met the most wonderful Autism moms…literally by accident…and it changed my life. Never underestimate the power of a support system. And take care of yourself.
For anyone who knows someone with a child who has special needs, especially those who are newly diagnosed…I know it can be hard to know what to say. Keep it simple. Say, I’m here for you. But mean it. Send a text. Check in. Drop off a cup of coffee. Make them a meal. It will go a long way, I promise.
And for all the sweet kiddos, like Max, who are working hard, day in and day out…you are the real heroes. Keep being amazing and show the world all you can do.
Much love, my friends.
photo credits to the incredibly talented Kristen Burrell Photography
More updates on our story-
Our Autism Story – 2018 Update
Our Autism Story – 2019 Update
Joy Miller says
I am just finding your page (because I was looking for 21 day fix stuff) and stumbled upon the autism blog. I can so relate to many of the things you said especially about looking back and all the signs were there. No one in our family thought anything was that severely off with our daughter either. The doctors, teachers, her dad, all contributed it to something else. My daughter was not diagnosed with autism until 7th grade. They claimed early on she was just learning deficient. I am glad you pushed and got help early. It is so hard to find the right help. We are still looking and still fighting to get our daughter help and assistance she needs. She is 19 now and is only able to work part-time. She doesn’t want to drive, so transportation is hard. I want to encourage you to get as much help as you can as early as you can. Thanks for writing about your little guy.
Thank you so much for sharing about your daughter! Hugs to you!
Wow did this post hit home. I went through the same struggles trying to get my little guy diagnosed back in November. Pediatrition, my parents, even my husband thought I was crazy. Now,4 months later, they all set the huge changes 1 hour a week had made in him and realize how bad it was. Glad I trusted my mommy instinct and went against what everyone else said to save my almist 3 year old from getting in any deeper than he already was. He’s a whole new kid already! Thanks for sharing your story!
Natalie Bonello says
Nancy, I have followed your blog for years and just today when I read your post on Mia, then I came to read about Max. I am reading in my classrooma nd had to hold back tears, because your story touches my heart. My bonus son, Ethan, is on the spectrum. I met him when he was 6,a nd now at 12 years old, he lives with us full time and have seen him make amazing progress with an amazing team of teachers and changes in his diet. His sister, Laila, my bonus daughter, she is also “Literal sunshine in our lives”. Shes the best little sister in the world. The siblings are amazing, and need to be celebrated everyday! Sending hugs to you fellow warrior Mama and positive vibes to your family!
I love this, Natalie…and I love the term bonus son/daughter. How wonderful that they have you in their life…hugs to you, too. ❤️
So many hugs to you and all the Autism moms out there. Your strength is truly inspirational. What a beautiful story about your family and experience.
Thank you, Anna. Love to you and yours. ❤️
Thank you so much for sharing your story! I actually found your blog because I was looking for a pork tenderloin recipe, and you mentioned finding a preschool with a good inclusion program. As an autism mom myself, the word inclusion tipped me off and I searched autism. Funny the things you pick up on that not many others would. My daughter has autism and our story is very similar. I loved what you said about realizing how far we’ve come. Each day still has it’s challenges, but I never thought we’d be where we are now and I’m so incredibly grateful I pushed for EI, even though the pediatrician (and family and friends and literally everyone) told me there was nothing wrong. I also blog as an outlet so that there is at least one thing in my life autism doesn’t run- although I do blog about autism a lot! I can’t get away from it LOL!
Heather! I am so happy you reached out – I love hearing from fellow Special Needs mommas, and to see you are also a blogger, well, that’s amazing. I am off to stalk your social media and start following you, lol! For real, though, the one thing that has really gotten me through these past few years is finding other people who get it. SO good to meet you, Heather. ❤️
Nancylynn you are such a trooper and an inspiration for all. Max is so blessed to have you as his Mother! I know as hard as it seems right now you’ll always be grateful for everyday and night you have with Max growing up! He’s such a precious child and even though it doesn’t seem like it right now, he’ll be reaching for the stars as he gets older. I’d admire you so much for all your hard work!! You’re such an inspiration for everyone! Thank you for all you do!! ❤️❤️
Margie…thank you for your sweet words! I am so grateful for your love and support and that our paths have crossed through this journey. Much love to you, my friend!
Thank you for sharing your story and letting others know there is hope and joy. I am a special education diagnostician in a rural public school. I meet with parents aon their journey to get school-based services, and the school team is often the primary resource for families with children with disabilities. I often recommend going gluten and dairy free, but know it is hard for families to make and stick with this commitment, especially if their child with autism only eats a few foods to begin with and those foods are crackers, pasta, milk….you get the idea. How did you do it? I know the families I work with want to help their children, but they can’t watch their children refuse to eat yet cry and scream with hunger and frustration. I’ve not yet had a family stick to significant dietary changes and it is disheartening. Thank you again and bless you and your special little boy!
Thank you for taking the time to read my story and for all the work you do to help the families in your school. Your job is a very important one as life immediately following a diagnosis is so scary. And it’s great that you suggest diet to your families. I believe in it 100%, and yet so many people and doctors even look at me like I am crazy! Anyway – the older the child, the harder it could be. I was very lucky – I started before my son turned 2, so he was still open to trying different things. And he was always sensitive to milk, so he never drank it, but I was giving him other foods that contained dairy. So I did my best to swap out his favorites and go from there. For us, we changed everything at one time. Maybe your families could try just eliminating gluten first, as that is easier and also more inexpensive. Gluten-free pasta, crackers and cookies are readily available and many store brands have their own version. I would also stress no food dyes or artificial flavors. Then maybe the dairy could come later? I hope this helps a little – it is such a hard thing. Let me know how else I can help! My best – Nancylynn
I just came across your blog when looking up 21 day fix recipes and I read this and give you such praise. You are an amazing mother and the efforts you have put forth for your son is huge. Early intervention is such a huge thing and you’ll see a huge difference when he’s older. I am a child and youth social worker in the school board and I work with students who have autism everyday. I totally understand and just wanted to say that this blog is amazing and you as a mother are so insiprational. Just wanted to let you know
This means so much to me, Jaime…thank you for taking the time to write such a kind note and for the amazing work you do every day! xo
Heather Springsteen says
Oh Nancylynn, I should have been reading these sooner! I am in awe! Max is adorable! Your drive for knowledge and compassion are amazing. I am super thankful you have found support! Thank you for sharing this!! Much love and hugs to you and your family!!
Thanks, love!!! xoxoxo
Esther Wagner says
This story hit so close to home for me. When my son Alexander who has Autism as well was diagnosed, I blamed myself. He is now eight years old. He was officially diagnosed in August of 2011. We have been through many therapies and much more. The support in which we have received from the Autism community has been amazing. He has in the last year become more verbal. You are not alone Momma and we moms of special needs children have to stick together. Take one minute at a time and deep breathes. <3
Hi Esther…my Max was almost an Alexander…it’s his middle name :). It’s so wonderful to hear the progress your son is making – that’s so awesome. And thank you for your kind words and support…I couldn’t agree more. We do need to stick together! Much love and appreciation to you, Momma!
This story so deeply touched my heart and even now I still have tears in my eyes. I too live with Autism daily as my oldest son was diagnosed at the age of 2 (he’s 4 now). We’ve come a long way, and we still have a long way to go, but he manages to blow my mind everyday. Stay strong mama, you got this, and Max is truly blessed to have you as his mama.
Hi Erika – your words mean more than I can say…thank you so much. And I can feel the love and pride you have for your son…so beautiful. Hugs to you both, fellow warrior momma! xoxoxo
Renee Morrison says
Tears streaming down my face reading this! Beautifully written and such supportive words when you have been so much. He’s obviously an amazing boy and you are doing an exceptional job. 🙂
Thank you, Renee…your support and kindness means so much. xoxo
Diane Coumou says
Dear sweet Nancy Lynn,
You have been through many challenges in your life. You have always met every one of them head on. God picked you to be Max’s Mom because He knows your strength and immense capacity for love. Both you and Max are blessed to have one another. You both will fly through these challenges together with the help of all your angels!! Love you. Aunt Diane
Thank you, Aunt Diane…I believe what you said is true. We do have lots of wonderful angels helping us along. I love you and thank you for your sweet words and support. Hope to see you soon. xoxo
Sandra Andersson says
These are such beautiful, supportive words NancyLynn. Thank you for the honor of being part of your history. If there is ever anything we can do to help soothe your tired body, easy your loving heart, please let us know. Besides chiropractic, we are now offering massage, acupuncture, reflexology, YL Essential Oils and a whole lot of hugs. Prayers to you and your family.
Thank you for your kindness and support, Dr. Sandy. <3
You are such an inspiration! Thank you for opening up your struggles, you continue to amaze me in all that you do and in all that you are! Keep on being the rock for Max so that he will continue to soar.
Thank you, Lauren…I’m blessed to have such wonderful and supportive friends like you. xoxo
Suzanne Taylor says
NL, I am glad you shared your story. Your road maybe long but with you by Max’s side things will be just fine. You are all in my prayers daily. Hope to see you and the kids over the summer. Much love, suzanne
Thank you for your support and kindness, sweet friend…would love to see you, too! Let’s make it happen. xo
I am so glad you used this platform to put these beautiful and important words out there. Max is lucky. Your followers are lucky. Lucky that you are so resilient and positive and strong.
Thank you, Michelle…so grateful to have you in my life. I am lucky.
Tiffany Ziegelhofer says
This is the best thing I ever read in my life. It reminds me how we’re all battling something and although life isn’t perect, we have each other to get through it. You inspire me in more ways than you’ll ever know. You’re gonna go far NL. What a lucky mom your family has.
Tiffany…thank you for your kind words…this is exactly how I feel. In the beginning of this journey, I felt incredibly alone and isolated, but once I started to talk about what was happening, the support and love from others changed all of that. Thank you for adding to that feeling. xoxo
You are amazing, Nancylynn. Max is so fortunate to have you by his side all the time.
Thank you, Niki…as much as I miss all of you, I feel so blessed to be able to be home now. Thank you for your kind words and your support…means so much. xoxo
Darla Tate says
Oh my word. I had no idea and am crying reading this. Thank you for sharing your story with us. And thank you for sharing all that you do to make us better in our everyday life. Hugs!!!
Thank you for taking the time to read our story, Darla…your words and support mean so much. xoxo
Such beautiful words Nancylynn. You are truly an inspiration to all those who are going through a similar journey. Max is blessed to have such a passionate, supportive and caring momma. ?
Thank you, Tracey, for being such a positive force in our lives…xoxoxo
Well said, NL. Max is lucky to have you as his mom.
Thank you, Karen…we are lucky to have each other. xoxo
Beautifully written and so brave! Max is so lucky to have you as his Mom!!! ?
Thank you, Meghan…and I’ve been so lucky to have you and all of your support this past year. xoxo