Today is an anniversary or sorts. And not one I remember fondly…….have pictures of, mementos, or other positive memories. It was a day that ensured things would always be complicated, shook our family to the core, and changed our lives forever. It was the day that a neurologist we had never met before sat across from Mark and I and spoke one word in reference to our sweet son. AUTISM. And to this day I still stand in awe of the difference one word can make. The power of one word on people’s opinions, expectations, and biases towards a child. The impact that one word can have on a future. And the complexities that reside in that one word.
We went to the Neurologist that day because our Pediatrician was concerned with how quickly Cannon had gone from totally fine to a completely different person. It was literally in 2-3 months in 2009. So, she recommended we see both a Neurologist and Developmental Pediatrician for evaluation. When I made the appointments it just happened that we could get the neuro one first. I remember sitting in that office wondering what in the world we were doing there. I could understand going to the other doc……but not this one. We did not suspect neurological problems and had no idea she had the ability to diagnose us with anything else. There were some foam letters in the exam room that Cannon fixated on and never parted from. Arranging them in order and screaming if he couldn’t find one or if we tried to get him to play with something else. A month prior, there was no fixation, no obsession, no repetition. The downturn was just so fast. When the doctor entered she surveyed the paperwork we had filled out and asked us more questions……all while watching Cannon play. She eventually did try to talk to him, do an exam, and perform some assessments. Not to much avail. At the end of the appointment, she looked at us with assurance and said words I won’t ever forget. “Based upon my evaluation and the information you have provided, I feel confident diagnosing Cannon with Autism.” The sting of that word hurt more than I can possibly express. I had to hold myself back from screaming “NO!” I felt like I was gasping for air. Tears surged to the edge of my eyelids and streamed down my face. I couldn’t speak. I just couldn’t. But I wanted to. I wanted to tell her he was just having a bad day, didn’t sleep enough lately, or was just going through a bad phase. But the words she spoke, I knew deep down in my heart were now our reality. I wished with all my heart it wasn’t……but I knew it. She encouraged us to see the Developmental Pediatrician for a specialized plan and further evaluation. She also wanted to get an EEG and MRI. We thought this was crazy but they did later, to our dismay, turn up the Focal Seizure Disorder. She also said one more thing that has stuck with me. She said, “He’s still the same little boy you brought in here today. That hasn’t changed.” To me she was saying, you don’t leave here with a different child. You still love him just the same. He still loves you just the same. The fundamentals of your relationship are the same. Even though EVERYTHING else is about to change.
We walked in a daze to our car and strapped the boys into their car seats. I remember shutting the car door, turning my back to the window, and sobbing into my hands. Mark grabbed me and we just held each other crying. WE JUST COULDN’T BELIEVE IT!!!! We were not mentally prepared for this to happen that day. On the way home, I sent out a mass text. For the first time in my life…..I didn’t want to talk. I just needed time. To process this, to cry, and to grieve the life I had hoped of for my son. The text said something like “Cannon was officially diagnosed with Autism today. I am not ready to talk. Just need some time. Will let you know when I am. Love ya’ll!” I just didn’t want to answer questions or be pitied. To hear comments about how we will get through this, they might have known this ahead of time or we should have. I told Mark on the way home that I was going to give myself 2-3 days to cry about this and then it was time to start fighting. I have always been a planner and needed a time table. So that is exactly what I did. When my 3 days were up, I jumped online and signed up with Autism Speaks, got their 100 Day Kit (what you should do within the first 100 days of diagnosis) and began doing research to figure out what was next. On December 23, we saw the Developmental Pediatrician. His job is to diagnose, follow, and come up with the plan of attack. He concurred the diagnosis and prescribed 30 hours a week of Applied Behavior Analysis (ABA) therapy, 1 hour a week of Physical, Occupational, and Speech Therapy. He also wanted him in a developmental preschool as soon as he turned 3. He gave me books to read and websites to look at. A diet to follow and supplements to begin. A research study to get involved in. Training to take. A lab order for some basic tests and also specific genetic testing (Fragile X…..the one known link, to my knowledge, to Autism. He was negative for that one.). Also, he wanted me to see other specific doctors and therapists for further evaluations. When all was said and done, our 2 year old son had diagnoses of not just Autism but Hyperlexia, Focal Seizure Disorder, Severe Sensory Processing Disorder, Severe Expressive and Receptive Language Delay, Severe Fine Motor Delay, ADHD, and Chronic Gastrointestinal Impactions. That is what I meant when I referred earlier to the fact that Autism is so complex. There is so much more to and than just Autism. And there are so many other problems that kids like Cannon can have. Obsessive Compusive Disorder, Aggression, Sleep Dysfunction, and Pica to name a few. The disorder is a spectrum disorder. Where no 2 kids are alike. It is phenomenally complex.
I would like to take the opportunity to educate you a little bit. Since this disorder is becoming so common……the odds are that if you don’t already, you are very likely to know someone soon enough who has this diagnosis or has a family member with one. I feel it is important that you know how you can best support someone going through what we did…..are. PLEASE listen carefully and know that this comes from my heart. I am not criticizing, judging, or preaching. Just simply sharing information that I have learned through unfortunate circumstances to be so. My best advice is to …… Just show the family love. Meals, cards, phone calls, thoughtful gestures, free babysitting, a listening ear, hugs, and most of all, prayers. Honestly that is the all! Please do me a favor and don’t say what one person said to me…..”Well, you had to have known.” Although I know that heart was pure……it was not supportive, helpful, productive, and frankly insults the person as a parent. I realize that in these kinds of situations…..you just feel like you need to say something…..to fill an awkward time slot…..but that and anything similar is so not it. It makes it far worse. I prayed and asked God why this was happening and I came to the realization that I was being taught not to rely on man. But on God for the strength and encouragment to endure. One friend did hit it out of the park, though. (Love you Karli!) My biggest fear after Cannon’s diagnosis was that other parents would not let their kids play with him. Because he was different, they blamed us and/or thought we were bad parents, or thought some of his behaviors might rub off on their kids. And in a few cases…..my fears were realized. And it hurt……BAD. There are some people who stopped calling, coming by, or staying in touch completely from that day on. I beg you, if this ever happens to a friend of yours or even just someone you know…..please consider this an opportunity to carry out a great commandment. To “love your neighbor as yourself.” (Mark 12:31) They will become extraordinarily busy but please continue to communicate. Email, Facebook, a written note……anything. The isolation and loneliness that accompanies this diagnosis is so hard to endure. So very hard to endure. Every little effort by you means so much…..I assure you. But back to my one beautiful friend. She blessed me and my boys by coming over, bringing lunch, and her son for a playdate. She listened, gave me lots of hugs, played with both boys, and even did the dishes after. That gesture of kindness gave me so much comfort. I just needed to be loved, supported, and to know that Cannon would not become ostracized. She did exactly that!
We had some photos taken of the boys soon after the diagnosis. A friend of mine (Thank you Susan!) was the photographer. One photo from that session has always stuck out to me. You have seen it if you have perused the website here but just incase……voila!
I actually got emotional when I first saw it. And thanked my friend profusely. Why? Well, because we lost the Cannon we knew when Autism came into his life. The way he looked deeply into your eyes, his joy, and his constant smile were replaced with no eye contact, seemingly never ending frustrations, obsessive and nervous behaviors, and a smile that only made super brief and unpredictable appearances. Well, this one photo…….I feel like captured the old Cannon. And I love it! His old smile, his relaxed nature, joy, and playfulness. And those eyes! She really got a good look at them! I, personally, love looking into them so much……it was one of my focuses when I began this blog. To see, really see into his world and regain that relationship where he was comfortable looking into …… not past….. mine. I miss the old Cannon. So much! And this picture gives me hope and also a goal of what we are trying to get back.
So this December 7th marks 2 years since that rotten day. That sad, sad day. We wish it had never happened to us. We wish Cannon did not have to endure this every second of every day for as long as God chooses him to be on this Earth but we know that same God has a plan for him. And like most plans for a life, you cannot see into the future. To see why this was necessary, to see what is in store, how he might affect others, or impact the world. You just can’t. You just have to have faith and trust that our Father knows what he is doing and doesn’t make mistakes. My senior quote in high school was …… “I don’t know what the future holds but I know who holds the future.” I rest in that. We will continue to fight every day for Cannon. To ensure he gets the best therapies, medical care, and help along the way. And to love him like crazy!
Thank you friends! For being there for us, for loving us, praying for us, and following our journey. We thank our Heavenly Father for your role in our lives and pray blessings upon each of your families.
Please enjoy this song as I sign off today. It has truly been an anthem of mine over the last year. I am trying so hard to do what the song says……to “praise Him in this storm.” And on the days when I feel strong……it reminds me to be thankful for that strength and pumps me up even more! The days that I feel weak……it reminds me God feels my pain, will NEVER leave me, and loves me completely. And to praise Him anyway! On the days in between…….it just encourages me to stay the course. To keep on praising Him with my whole heart! I really love what the lead singer says before he begins to sing. “I guess what God is showing me is that sometimes He calms the storms in our lives and sometimes He just rides them with us. But either way, Blessed be the name of the Lord.” Ahhhhh! Good stuff! Have a listen!
“May our Lord Jesus Christ himself and God our Father, who loved us and by his grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word.” 2 Thessalonians 2:16-17
I just want to say ‘thank you’ for sharing your story and your heart. I am blessed to have three healthy boys and can’t imagine being in your shoes… It has always been too painful to imagine what a mom or dad feels when they loose their child. We’ve had our scares of course, but it all worked out.It’s just too painful.
It also seems so painful to have your child one day and within two or three months to lose your son to Autism. As I read this, I just cried, and I still am. It’s not pity but it is sadness for what you have all gone through and in not having the Cannon that you knew. I pray that with therapy and everything else that can be done, that you get a part, if not all, of Cannon back!
I’ve been thinking about Cannon for days now and wondered if he would like coconut pudding (or flavored) or maybe macaroon cookies. God has given me the gift of helps for one, and so He gives me ideas. I have a hard time NOT helping, or trying to! Yaa, I can be a pain.
I have been reading about coconut for my own health issues and found out that coconut meat has A LOT of fiber in it. Many people with constipation have had wonderful results. I realize that Cannon has a more complex problem but wondered if it might make life a little easier.
I could bring either or both on Sunday, if you think he might like one of these, and see if it may make a difference for him. Please send me an email and let me know, if you can. I’m so glad you guy’s got to go home from the hospital! Wahoo!!!
My prayers are with all of you and I hope I can be one that shows you love and gives you the support you need. If my sons were younger, I’d set up a play date! lol!!! But my youngest is 17.
May God’s blessings always abound for you all,
Thank you so much for all of your kind words, thoughts, and sentiments. We are so grateful to get to share our story and even more thankful that people are taking the time to read it! I also appreciate your thoughts on his diet issues. Cannon does eat coconut based products! Coconut and rice save our lives! He can have a VERY specific kind of coconut yogurt and the ability to have rice products allows for some bars, breads, and such. But all with very careful consideration and review of the other ingredients. We appreciate your offer of the cookies and pudding but he can’t have anything with flavoring, gluten, or sugar (among far too many other things to list). But please don’t worry! We have a few companies that take good care of his needs! And the Sunflower Market to get those things from! So, we are good! Thanks so much for wanting to help on that one! Merry Christmas Lisa and family!
It has been some road you have traveled these past two years! You are such an inspiration to others for your fight, strength and faith! And your ability to write and share your journey is incredible! Love you friend!
Thank you wonderful friend! Not just for these precious words but for documenting our memories! I cannot possibly express in words how priceless that gift is! And that one photo in particular! Ahhh! It just kills me! I love it so! Thank you for the millionth time for somehow seeing into his true soul with your camera! You bless me constantly friend! Thank you so much!
Hi friend. Now that I stopped sobbing I want to tell you how much I love you all. You are the most patient, kind and loving mother I know. Cannon is blessed to have such a loving family and you are blessed to have him.
Oh Melissa! Saying that I love you so much too just doesn’t even begin to cover it! You mean the world to me! And I count our friendship as one of my life’s greatest blessings! Your constant, unwavering support of me and my family touches me so deeply! You are stuck with me for life friend! We are going to hitting up Sunday Fun days and such when we are 80!!!!! 🙂
Ok you didn’t warn me that I should’ve waited to put my makeup on AFTER I read this. 😉
I love you + your sweet, precious, gifted boys more
than I could ever express or show! I feel so inadequate as your friend that I don’t do near enough!
I am continually inspired by you and your strength, dedication, devotion, + support to not only Cannon but to EVERYone who is blessed to call you friend. You are the most thoughtful
woman I know!
I am here for you and your family ALWAYS!!! And I can’t wait for the day when I get to do your dishes from the huge celebration party that we have that the Cannon you’ve missed so much has returned! Until that day I’ll be here beside you all the way….Love you my beautiful friend! <3
Ok….wow! You never cease to amaze me with the unbelievably kind, meaningful, and supportive words you bless me with! I will never be able to thank you for “that day” properly. You seriously, just by doing what you did, gave me an immense amount of hope and seriously………it was the ONE thing I needed at that time! HOPE! Saying “thank you” will never be enough. I just had to honor your efforts in the best way I know how. To scream from the rooftops about my wonderful friend! I love you and I welcome with an open heart and mind….the thought of the party you mentioned! I pray with all I have that day will happen! But if not, I take comfort in the fact that I have a Father in Heaven who will never leave me or forsake me. A beautiful couple sons and one rock star husband to make me smile. And a friendship that will always bless my heart with such treasured memories! Now, let’s find some time to make more! Ok?! 🙂 Love you Karli! So much! 🙂
So glad I found your website. Its like finding a close friend it seems you have known forever. Your posts are inspirational and I look forward to reading more.
What an amazing compliment Samantha! Thank you so much! I, too, am so thankful you found us! However that may have been. I pray that you will come back and love, cry, and laugh with us through this journey. This blog is literally my heart in writing and the honesty and raw-ness I try to show is vital. I never thought I would love being so open but it is liberating. Like not allowing Autism to take all it tries to take from me and my family! God bless you!
I address you that way, having never met you a day in my life, but we share a similiar journey that connects us in spirit. I can feel the very heartbeat of this story and along with you, I recall the day my son was officially diagnosed with Autism… and wondered what it meant for our family.
The journey is filled with uncertainties, and meetings, and reports, and assesments, and therapies, and countless tears. But thankfully it is also filled with hope and love and even people who provide a safe haven for our emotions.
Thank you for being so transparent, there is a certain healing in that for you and me and others. We would love to share your inspiring story on our website, http://www.onaisle9.com Hope to hear from you soon and know that you are changing lives with your brave testimony! Thanks for sharing!
You move me so Sarena! Your words, your kindness, your shared journey, your heart for your family and the Autism community. I am honored and thankful that you have taken the time to read about our life and struggles. You are so right when you speak of how hard this is but also how much hope and love still resides in our hearts and minds for our children and others like them. I feel like I have said it 1,000 times since I began this blog……but I will say it again……I am beyond amazed at how therapeutic and freeing it is to share our life with our blog family. I could not understand at the time why God put it so strongly on my heart to take this leap of faith. But I do now. HE has given me a platform to educate others about this disorder, keep people updated on our latest victories and setbacks, and also the opportunity to share what He is teaching us in our daily walk with Him. I have really enjoyed reading and learning from your website and would be honored if you would like to share our story. Much love to you and your family! I pray that someday we will get to meet in person! 🙂 God bless!