There aren’t really words to tell everyone you know that everything you knew about your life is now different. So, instead of spending days and weeks trying to find the right ones, I’ll just set this down in one great lump and let you do with it what you will.
Sophie has autism.
We’ve known for months that Sophie’s behind verbally. She hardly speaks at all, and she loses words. She’ll be two on Monday and last week she said exactly two words. Over the last several months, we’ve watched our formally social girl become increasingly drawn inward to a place where we can’t always catch her. She doesn’t respond to her name. She doesn’t call out to us. She never says “mama.” She doesn’t copy us when we say “can you say ___?” She doesn’t identify pictures when asked. She doesn’t engage other children most of the time. She’s not especially affectionate.
For months, I’ve sought reassurance from friends that she’ll catch up. But despite all my constant narrating, book reading, practicing words, singing songs, and signing to her, we haven’t seen any improvement. I couldn’t sleep because of the worry. We decided to seek help. The first step was to talk to a new pediatrician. He referred us for a speech evaluation. At the end of our 2-hour visit, our speech therapist, Clare, kindly told me what I already knew: we should have her tested for autism. She told me to get in touch with Early Intervention services to see if we could seek out other therapies for her.
During a rare quiet moment in the morning, I called the number for Early Intervention. My hand shook as I dialed. And each ring took an eternity. And I could hear my voice shake as I talked to the kind and sweet lady on the other end of the line. She was very helpful.
I hung up the phone and burst into tears. Not like, tears that stream silently down your face. The choke-you-till-you-can’t-breathe ugly cry kind. I sobbed. Sophie sat oblivious on one side of me, which made it worse. I was LOUD, I was shaking, and it didn’t even register with her. Milo’s lip started trembling, so I tried to shock myself into holding it together by attempting to smile at him. It was awkward.
The rest of the day, I just wanted to scream or retreat. I wanted to run. I wanted to shake out all the stress and the panic and the fear of the unknown.
Is this my new life?
Will she ever get better?
Will we be excluded from playgroups or preschools because others are uncomfortable?
Will she be tortured and taunted at school?
Will she date? Drive? Marry? Mother?
As I sat on the floor choke-sobbing between my 2 month old Milo who was starting to sympathy cry and a completely non-responsive Sophie, it seemed impossible. And unfair. I wanted my life back. I wanted the life I wanted back.
For days, I tried to simultaneously learn enough about the evaluation and therapy processes and to avoid any extreme stories of severe cases. I found myself on websites with photos that just made me bawl. Beautiful children whose eyes are unfocused and staring into space. Who aren’t interacting with their parents and siblings. Stories of parents who, between the 2 of them, were working 5 jobs (and sometimes a paper route) to pay for the therapies their child needed. Hundreds of thousands of dollars of therapy. Parents sharing sadness and guilt that their child(ren) without Autism more or less always had to come second. Of mostly everything revolving around dealing with, treating, and coping with the child with autism out of necessity.
I had moments of panic–were we starting too late? If we can only have Early Intervention till she’s 3, we can’t waste a single day! Every day, every hour that passed seemed like moments lost. How would we ever pay for all the therapies? Would I need to find work? How will I manage caring for Milo and learning/paying attention during Sophie’s therapy appointments?
I had moments of guilt–Is this my fault? Should I have worked with her more? Is there something else I could have done? How will Milo fit in all of this? Will he always feel like he comes second? That he always has to defer to Sophie’s needs? How can I be so upset about the diagnosis?
I had moments of deep, dark sadness–will she have friends? Will people be kind? Will we be isolated? Will other mothers avoid me (and Milo) because Sophie is too difficult or awkward to be around? Will Sophie do well in school? Will I have the strength and courage to hold everyone and everything together?
I’d heard the way others discussed (even matter-of-factly) the autism of others. I didn’t want anyone to talk about Sophie that way. I didn’t want to spend my life defeated and constantly drained. I wanted to be strong and joyful and energetic.
The next weeks were a difficult blur. We had hours of evaluations. Speech evaluations. Audiology evaluations. Referrals to developmental pediatricians. Early Intervention appointments. None of us really slept well. Milo was sick for weeks. I’d find myself laying in bed, mind far too alert, eyes unable to close after feeding Milo in the middle of the night. It seemed that Sophie and Milo both needed me more than usual during the day. Some days, I literally paced for hours holding one or both babies. I was numb and hurt and had nothing left.
There wasn’t a magical moment where it clicked for me. But it did. Breathing is easier. Sleep comes in longer stretches. Milo eventually took a full nap again. I am able to give myself a pep talk every morning (and afternoon and evening) and to believe that there is hope.
I’ve been though what feels like 27 stages of mourning. I imagine I have about 27 more to go. And while sometimes out of nowhere, the thought will cross my mind “will Sophie be able to do that?,” I’m able to function. And breathe in and out. And hold and love my babies.
And there have been miracles. We’ve bypassed 3-6 month waiting lists for every single one of our tests. Family was in town from out of state to watch Milo while Sophie and I spent hours in a doctor’s visit. A generous friend watched Milo for 6 hours when we saw the developmental pediatrician 2 hours away. Another friend lent us her portable DVD player to make the long drive smoother. People at church have been understanding and kind when I’ve been spacey and had a difficult time fulfilling my responsibilities as well as I’d like to. Doors have been opened, blessings have been poured down, and people have stepped in.
I said earlier that everything I knew about my life has changed. That’s not entirely true. These things I know: God is good. Miracles are real. Love is everything. Kindness matters. Understanding is a blessing.
Our life will not be the life I imagined. Even if Sophie is streamlined by or before kindergarten, there are some very difficult years ahead. We’ll be starting 3-4 kinds of therapy in the next few weeks. We’ll all need to grow thicker skin and develop more patience and kindness ourselves. There will be unkind people. People who don’t understand. People who judge or bully or exclude. But there will be so many wonderful, beautiful experiences and victories in the days and months and years ahead. I don’t know what they’ll look like, and I don’t know how we’ll get through them. But I believe that we will. And we’ll learn to love our new life.
Because even though it’s not the one I imagined, it’s the one that I have and live and will learn to love again.
Note: naturally, this is a sensitive subject. Please be kind in your comments. Anything discouraging, derogatory, or unkind will not be published.
More posts on autism:
- While I breathe, I hope
- Happy Birthday, Little Light
- Sophie Update
- My Favorite Blue Crayon
- Sophie at Four
- So, So, So Much
Brittany Williams says
April 11, 2013 at 5:53 amOh Em, I’m so sorry you’re going through all of this. I wish there was something I could do to help. There’s a lady from the ward I grew up in whose son is autistic. If you ever wanted to get in touch with someone who knows what you’re going through, here is her facebook link (removed for privacy)
Please let me know if I can help in any way. I’ll keep you and your family in my prayers.
emily says
April 11, 2013 at 12:39 pmThanks Brittany! Love you!
Megan says
April 11, 2013 at 5:58 amMy heart goes out to you! We have a mutual friend, Kari Fruge, who sent me to your blog. My son has food allergies, and she had told me you did some elimination diets with Sophie back in the day so to look at your recipes. And, I’ve loved your blog since finding it.
We recently found out my son has a rare disease. I teared up reading your account, because I too, have felt those feelings. Perhaps not the exact same ones, but there is a mourning period when you let go of what you wanted and you accept what’s been given.
One thing that I’ve learned is to not look at your child as their limitation/label. It’s so easy to get wrapped up in their regimen, what they’re expressing/doing…is it enough? But, to see them as a beautiful child and to not get too clinical with them or let it morph your relationship. Sadly, that’s about all I’ve learned–but we’ll both get there and have many wonderful learning moments along the way. They may try us but they’ll also stretch us.
I found this ensign article helpful: http://www.lds.org/ensign/2013/02/the-refining-fire-of-grief?lang=eng
I also, just the other night, watched the HBO documentary on Temple Grandin. It was wonderfully uplifting. She has autism and is AMAZING and has accomplished more than I have. She also has several books. Perhaps that might interest you?
You can do this.
emily says
April 11, 2013 at 12:39 pmMegan – what a beautiful article! Thank you for sharing!
Aunt Kelly says
April 11, 2013 at 6:11 amI love you. So much.
emily says
April 11, 2013 at 12:39 pmLove you back 🙂
Tasmin Skye says
April 11, 2013 at 6:38 amI don’t really know what to say. I know I don’t understand the things you are going through, but I know that watching a child struggle takes such a toll on a mother. I know that things will be hard, but you are so strong and brave. I admire that about you.
One of my Young Women is autistic. I don’t hardly know anything about it accept the basics. At first, I didn’t even know how to talk to her, or communicate with her, or even show her that I care for her because she hates hugs, and she always looks at the ground, not really paying attention to anything going on. But. I have had some time alone with her after activities and such and have found that she is the most talented, smart, and sweet young woman in our bunch. She plays the piano like a dream and only started 3 years ago. When she talks about music, she sounds like poet and the words captivate me. She even writes the most beautiful songs! Her wisdom about the gospel and life tell me that she truly understands our Heavenly Fathers plan… and that she actually is paying attention in seminary, young women, and at home, even when I feel like she’s not listening.
She is different from the other girls. I won’t lie about that. But she has the most precious spirit. I don’t doubt that about your sweet Sophie. My prayers and thoughts go out to you and your family!
emily says
April 11, 2013 at 12:40 pmTasmin – Thank you! I appreciate your kind words. Keep loving your young women! They’re so lucky to have you.
Jennifer Olson says
April 11, 2013 at 7:02 amEmily, I feel for you and sort of know what you’re going through. We had our oldest, who’s almost 5 tested for Autism 6 months ago. It was hard to go to yet again another appointment, and eventually learn of his developmental delays in many areas and be told he’s borderline of being diagnosed autistic. That means we take him back in a year for a reevaluation to find out a bit more. Anyway, I just want you to know, you’re a great mom, and you CAN do this, and Sophie is so lucky to have parents who love her so much to get her the help she needs. If you ever want to talk, cry, or retreat, I’m here. Miss you!
Jennifer Olson says
April 11, 2013 at 7:04 amHe’s been in speech since he was 2 through early intervention and just a few months ago started private speech, OT and PT. He goes to a special preschool too.
emily says
April 11, 2013 at 12:40 pmJenny – Thank you! I really will be getting in touch with you soon. It’s so nice to know I’m not alone!
Becca @ Amuse Your Bouche says
April 11, 2013 at 7:03 amI’m so sorry 🙁 it must be a really hard time for your whole family. Try not to worry before you know the full extent of any problems (I know that’s a LOT easier said than done but it’s worth trying!). I’ll be thinking of you and your gorgeous family!
Gail says
April 11, 2013 at 7:06 amYou are exactly the right mom for Sophie… and Milo, too.
Keep up with those self-pep talks! God’s mercies are new every morning. And every evening. And every afternoon. And every hour. And every minute.
It isn’t easy, but you WILL make it! And Sophie will be loved and cherished and cared for!
I don’t begin to know what you are going through, but I have a son with Down Syndrome.
*hugs*
Amy says
April 11, 2013 at 7:38 amEmily, I have been reading your blog for awhile now and really enjoy your recepies. Your children are beautiful. I am leaving a comment because I was just at a seminar about a very unique diet (so to speak) and when I read your post I remembered the presenter saying that there had been some luck in treating autism with it. I was unable to find an email address on your blog and I know you are probably bombarded with suggestions but if you want I can send you the information.
emily says
April 11, 2013 at 7:44 amAmy – I’d love to hear more about it. By chance, is it the gluten-free/casein-free diet? Either way, please do email me! onelovelylife @ gmail . com
Marissa says
April 11, 2013 at 7:40 amI have been following your blog for the past couple of months and love reading about your sweet family! I am amazed by your strength. I have a little girl who is almost 3 months. Your perspective is refreshing and honest, and I really appreciate that! God bless you!
Melanie S says
April 11, 2013 at 7:44 amYou are just what she needs and she is just what you need. We are currently in the process of having my seven year old diagnosed with Aspbergers. I get the grief and know how hard it is to not take it personally. But you have done nothing wrong and that is evident in the pictures you share and the words you use to talk about your family. The amount of love you have for both those kids is amazing.
Sophie will have so much to teach all of you. My Aunt has cerebral palsy and something my dad once said about growing up with a sister who was different has always stuck to me. He said, why would I treat her any differently than my other sisters? She still broke my toys, took up time with my parents, and generally annoyed me. But she was one of my best friends and if anyone ever said or did anything to her, I knew I needed to protect her. It has made me a better dad and husband because I know what it’s like to be a hero.
emily says
April 11, 2013 at 12:42 pmMelanie – Thank you for your kindness and words of comfort and advice. We all need heros, and my hope and dream is that Milo is one of Sophie’s and that she’s one of his. All my very best to your family and your seven year old.
Brenda Toone says
April 11, 2013 at 7:57 amLove and prayers for you and Sophie. I have a friend whose son is five and was diagnosed with autism three years ago. She has become very involved in the Utah Autism Coalition (she now chairs it) and has many answers about early intervention and how to navigate the insurance system to get coverage for treatment. Please let me know if her contact info would be helpful.
emily says
April 11, 2013 at 12:42 pmBrenda – I would LOVE her contact information! I’ll get in touch with you on Facebook soon to get it.
Lisa Simpson says
April 11, 2013 at 7:57 amOh Emily….thank you for sharing this!! You have such a way with words and I’m so touched! I remember chatting with you back in Provo and we were venting about school and we said that all we wanted to do was to be a mother 🙂 And I knew you would be a fabulous one at that! You can do this!! I sure love ya!! Love Lisa
emily says
April 11, 2013 at 12:42 pmLove you too Lisa! Your baby girl is ADORABLE!
Pam Lynn says
April 11, 2013 at 8:08 amWith all the negative in the world, it is refreshing and comforting to know that there is also an abundance of understanding, kindness, and especially love.
It is true that you are the perfect parents for Sophie. I believe that she was given to you with intention. You CAN do this, because you ARE doing it. With Grace, Courage, Faith, and Hope, your lives will never be the same – they will be better.
Casey says
April 11, 2013 at 8:24 amEmily, I had no idea. We adore Sophie and those few times we’ve gotten to watch her we loved her even more. I have a lump in my throat for you. I watched my sister go through the same thing with her oldest and a dear friend of mine has 2 children that are autistic. As I have seen both of these strong women love, nurture and teach these special spirits I have seen the progress they have made. You remind me of them, strong, smart, loving, and willing to do what it takes for your children. You are great and Sophie is so lucky to have the parents she has. If you need any support from mothers who understand I know my sister and my friend would love to help you. And of course, let us know if there is anything we can do to help. We think you guys are so awesome.
emily says
April 11, 2013 at 12:43 pmCasey – Thank you! I’d love to get in touch with your sister. If she’s anything like you, I already know she’s amazing. Can’t tell you how much I love your family!
Ann Packard says
April 11, 2013 at 8:45 amYou have received some great advice already. Don’t know what more that I could add. You and Michael are doing all you can and then some. One comment that was made brought up the memory of a family in our ward who had adopted two children with Downs Syndrome. One thing their father would share with the youth was that DS was just a part of who they were – it didn’t define them. The same goes for Autism. Any “disorder” may adjust your life forever more – but it does not define who you are and what you do, it just makes you better, as your mom says.
I will however, recommend you look into the foods you feed her. I will have to find the person/program/book that some family and friends with autistic children have used, and the results have been significant, especially in cognitive development for their children.
emily says
April 11, 2013 at 12:45 pmAnn – Thank you! Michael said something similar last night as we lay awake talking about it all. “This is part of our life. This isn’t our life.” It’s true! Please do pass along the person/book/program your friends and family use. I’ve been collecting information on the gluten-free/casein-free diet (which I hear has helped so many). I’d love anything you’d have to share!
Kate says
April 11, 2013 at 9:08 amMy heart goes out to you & your family. I’m a longtime reader because I love how honest and genuine you are, and love reading about your gorgeous kiddos as I’m pregnant with my first, but never commented til now. What a challenging journey for you all, yet I can’t help but feel that Sophie is so blessed to have you and your husband as her parents who will fight for her and love her no matter what lies ahead. I have several friends who have been diagnosed with some form of developmental disorder (autism, Asperger’s or somewhere else along the spectrum) and their successes are inspiring. Our prayers will definitely be with you!!
emily says
April 11, 2013 at 12:46 pmKate – Thank you so much for your comment and your encouragement. This has been so difficult and scary to share, and comments like yours help me feel like I’m not alone in all of this. Thank you, thank you.
Neha says
April 11, 2013 at 9:12 amHi Emily…I have been reading your blog since a long time now and almost every Friday I have a smile on my face reading about Sophie and more recently Milo….reading today I just burst out in tears. I cannot imagine wht u r going thru….u r an amazing mom I know that there will be a solution to all this…like the way u r positive..keep being the same….you and your family will be in my prayers… 🙂
emily says
April 11, 2013 at 12:46 pmNeha – Thank you for your prayers and sweet comment. I needed both 🙂
Jan says
April 11, 2013 at 9:12 amEmily, I am so sorry you are going through this and that the last few weeks have been so difficult. We went through some of this with our 2nd oldest…getting him evaluated, trips to Melmed Center, etc. It was a time of worry, anxiety, and frustrations for all the reasons and steps of grief you expressed. But I knew that if there was a diagnosis, at least we would be able to know how to help him. Even though I don’t know what you are going through, I do know that you are great faithful parents and Sophie and Milo are both blessed to have you. I know you have your ward, but we are close too and I would love to watch Milo or Sophie any time…appointments, evaluations, or just a mommy moment to yourself.
emily says
April 11, 2013 at 12:47 pmJan – THANK YOU! I really appreciate the offer. I really might take you up on it sometime. Or, at least, try to find out what you’ve worked on that’s worked for you.
Jan says
April 11, 2013 at 2:56 pmHe didn’t end up getting a diagnosis…we only thought that it might be the case because he had some delays with speech and other development. Seriously, please call me to help with your kids! You are in our prayers.
Erin says
April 11, 2013 at 9:13 ami enjoy reading your blog and the good perspective you have on motherhood and life. I can only imagine how hard it is to re-configure the future for your child. I hope that your new experiences with her will be fulfilling and bring happiness, if a different happiness, than you had originally planned. Your record of this will be an inspiration to many others, not only those going through similar experiences. Thank you for sharing!
emily says
April 11, 2013 at 12:47 pmErin – Thank you! It was scary to share, and I appreciate your kindness.
Becky C. says
April 11, 2013 at 9:14 amEmily,
Although I don’t know you personally, my heart is broken for you. As a mom myself, I can only imagine how difficult this diagnosis is. Prayers for all four of you. You are so strong. You are such a wonderful mother. Sophie (and Milo) are beyond blessed to have a mama like you taking care of them.
All the best,
Becky
emily says
April 11, 2013 at 12:48 pmBecky – It’s days like this I’m glad I write a blog. You really helped make my day. Thank you!
Becky C. says
April 11, 2013 at 3:44 pmI’m glad you have a blog too! You are an inspiration, and I’m glad I could make your day just a little brighter. Stay strong, Emily, and remember God is good.
Kyla D. says
April 11, 2013 at 9:15 amEmily, I was just sent a link to your blog post by your mom’s cousin Catherine, and here is part of what I wrote back to her: “Oh my goodness Catherine–[Emily’s] post hit home with me on so many levels. Kate was diagnosed at almost the exact same time (just before her second birthday), and so many of her feelings and experiences in those first days and weeks mirror my own EXACTLY. It is so difficult to explain to others how your life changes completely in one day–but in a way that forces you to grieve and cry while you put on your biggest, strongest Big Girl Panties and prepare to fight for the best possible outcome for your sweet child….Can you tell I relate ?”
Our Kate was diagnosed with severe autism almost 8 years ago (no language, eye contact, flapping hands, spinning in circles, the whole thing) and I want you to know that next week she will compete on her competitive swim team at her second meet, and the week after that she’ll meet the governor and receive an award for winning the state Arbor Day poster contest (not because she has autism, but because her poster was awesome!). Her classmates don’t know she has any kind of diagnosis, and she’s doing great in school without any extra helps (other than 30 mins of speech each week). She want’s to study animal science at USU and thinks Justin Bieber is HOT 😉
Getting here was HARD.
Years of intensive ABA therapy, lots of education on my part, cooperation and sacrifice on our family’s part, little and big miracles, due process with the school system, etc. etc. etc. But my point is–YOU CAN DO THIS. I found that what I might not do for myself, I will fight kick and scream for for my child. And you will be rewarded through every single milestone, every word, and every moment of connection that will surely come as a result.
Here is an article I wrote several years ago about our journey with autism–much has happened since then, most of it good stuff: http://legacy.autism.com/families/military/408-mildoyle.pdf
Feel free to contact me to chat, share resources, or pretty much anything 🙂 Hugs, Kyla
emily says
April 11, 2013 at 12:48 pmKyla – I WILL be getting in touch with you soon, I’m sure. I’d love to know what’s been working for you. I so enjoyed your article!
Aunt Rosala says
April 11, 2013 at 9:22 amYou make your decision, fill out your papers, send them in and wait for your call. When it comes you might not even recognize your destination, but your faith assures you that it was inspired so you trust that it is truly your personal mission from loving heavenly direction. Now that your mission is defined, you have done what most newly called missionaries do, researched all available resources to learn all you can to take on your responsibilities empowered with education and perspective. This child could not be more fortunate than to come to loving parents surrounded by the most incredible support system to be found anywhere! There is joy to be found in your personal mission. There is wisdom and encouragement to be shared and love beyond your wildest dreams! Please know of our love and support for you and your family!
emily says
April 11, 2013 at 12:49 pmThanks Aunt Rosala!
Melissa says
April 11, 2013 at 9:25 amOh Emily, this is tough news. You’ve been through a lot already and it is hard to have uncertainty about the future. I don’t know where Sophie lies on the autism spectrum, but I do know that you and Michael are as diligent and engaged as parents come, you’ve done everything right and you have so much to offer her. Sophie also has a marvelous extended family that will always love her for who she is. We love and admire you too and are here to support you in life’s journey.
Isaiah 41:10
emily says
April 11, 2013 at 12:49 pmThank you Melissa. Love you so much!
Jami Hirst says
April 11, 2013 at 9:25 amOh Emily! I had no idea that when you commented on my blog a little while ago what you were going through. Please forgive my ignorance…my response back seems trite and insensitive. It is amazing that you were able to uplift me when you are going through such a hard time. My heart aches for you and makes any problems or insecurities I have seem very insignificant. I have always admired you (way back to our Public Health days) knowing you were an amazing person, thinking you were probably a wonderful wife/homemaker, and believing that someday you would be a phenomenal mother! Guess what? You are. No contest. Please know that I have already prayed for you and your sweet family, and will continue to do so. Your faith means so much. The Atonement is real. Much love to you and your beautiful Sophie, sweet MIlo, and kind husband.
emily says
April 11, 2013 at 12:49 pmJami – PLEASE don’t apologize! I meant every word. You did and do continue to inspire me!
Lynn says
April 11, 2013 at 9:38 amNo temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it. 1 Corinthians 10:13
Emily continue to be the best mom you have been each day. Even though we are miles away
you and your family are in my thoughts and prayers.
Lynn Pierce
emily says
April 11, 2013 at 12:51 pmLynn – Thank you for your comments and encouragement! I love that verse! Also, it’s funny you mention that book. I just finished it this morning 🙂 Thanks again. I always enjoy hearing from you.
Ally's Sweet & Savory Eats says
April 11, 2013 at 9:40 amAs the daughter of a speech pathologist and a middle school principal, I know all too well the trials you are going through as a parent. I saw my parents many a night sitting and talking about their kids with autism, but you know what? Only in a positive way. Kids with autism are special and great. And Sophie seems to have the BEST parents for this challenge.
You and Michael will get through this and so will Sophie. She sounds like she is in the best care and will just continue to grow and learn.
I selfishily hope you continue to blog, as your words and writing always bring me peace and laughter, but I understand if you need a break. Sophie and Milo are your #1 priority and I expect you to put your full efforts into them!
Take care and hugs:)
emily says
April 11, 2013 at 12:52 pmOh Ally, thank you, thank you! Don’t worry, I’m pretty sure I’ll be blogging for a while 🙂
Lynn says
April 11, 2013 at 9:44 amA book to read: Louder Than Words: A Mother’s Jounery in healing Autism by Jenny McCarthy. She also has a website.
Ann says
April 11, 2013 at 9:59 amEmily- what an amazing post. I was really touched that you would share such a personal and painful experience and process of grief. I’m so glad you made it through that first stage and feel hope and are receiving strength and support from loved ones and from God. I believe you’ll always continue to receive that. We’ve had you in our prayers and will continue to do so. Sending love your way!
emily says
April 11, 2013 at 12:53 pmThanks Ann! p.s. I’m so excited for you and Bryndon!
Anna says
April 11, 2013 at 10:00 amMy heart goes out to you. I will keep your family in my prayers. I love that you are recognizing God’s blessings in the midst of your heart ache. My family’s “battle cry” is Faith Over Fear. As you know, God will provide for our needs and the best we can do is try and trust in him.
Love your site and recipes, and have always really enjoyed your family posts and pictures of your incredibly beautiful children. Sending love and prayers your way!
emily says
April 11, 2013 at 12:54 pmThank you Anna! Faith Over Fear. I see that becoming one of my new mantras 🙂
Haley says
April 11, 2013 at 10:15 amI don’t know you, but I love your blog. You are a beautiful, strong, deliberate mother. You can do this! You will find a new normal and learn to find joy in the life you have (easier said than done, I know). Thank you for being inspiring! I’ll be keeping your sweet family in my prayers.
emily says
April 11, 2013 at 12:54 pmHaley – Thank you for the encouragement. I needed it more than you might know!
Bryce Christiansen says
April 11, 2013 at 10:30 amSooo sorry to hear that.
If you need a job, you should have no problem finding a job writing. I’ve never felt so helpless reading a blog post about children before. We all know people with children who have autism, but I’ve never seen the terrible fear and pain that goes through a parent’s mind when they find out their child is going to have a rough road ahead of them. The closest thing I could think of was when my parent’s learned I had cancer, but that was temporary compared to this.
Well, if you ever need some help let us know. My mom is a speech therapist and works with autistic children fairly often. You probably have plenty of experts helping you now, but if you need anything passed along I’d be happy to.
Bryce
Cynthia says
April 11, 2013 at 10:36 amI read today’s blog with a heavy heart and tears in my eyes – my mother’s heart aches for you and the challenges to come. But from reading your blog these past couple years, I know that you and your husband are special people with awesome faith and you will have the strength and hope needed to get through this. Sophie is a lucky girl to have parents like the two of you (and Milo to for that matter!). I hope you can feel the prayers being said on your behalf by not only your wonderful family but also by total strangers that read your blog and love being a part of your lives. I will send long distance hugs anytime you need them.
emily says
April 11, 2013 at 12:55 pmCynthia – I feel like I know you, and I so appreciate your kindness. I DO feel the love surrounding me and it’s so uplifting when I need it most!
Mackenzie {SusieFreakingHomemaker} says
April 11, 2013 at 10:46 amShe WILL have a full life.
My nephew was diagnosed late (6 yrs old). They did the therapies, read the books and cried a lot. I’m not sure what all they have done, but the main thing they figured out was diet – he’s been gluten free for years. Once they figured that out he had less mood swings, he was able to better communicate, and was great at practicing eye contact and communication skills. He’s already taking college math and English courses.
Did I mention that he’s now 15 and has fallen in love for the first time?
Sophie will be fine, and I will be praying for you guys.
emily says
April 11, 2013 at 10:52 amOh Mackenzie! I needed to hear that. THANK YOU!
severiana says
April 11, 2013 at 10:50 amMade me cry! As they say God doesn’t give you more than you can handle…I can tell by your blog that you have incredible love for your children and have a very supportive and loving husband….Sophie is blessed to have you as a mother…someone who can put forth every effort to help her…
emily says
April 11, 2013 at 12:55 pmSeveriana – Thank you! I’m trying to keep that in mind each day. Thank you for the reminder!
Lynda Davis says
April 11, 2013 at 11:06 amI love you Emily and send prayers and comfort your way. You are an incredible woman and I have no doubt that you will rise to this extra challenge as you put your trust and faith in our Savior, Jesus Christ, and in our Heavenly Father.
You will learn amazing and wonderful things as you journey in this new direction. Sophie will teach you incredible and beautiful things and you will have great joy in mothering Sophie and Milo.
God has blessed you tremendously and He will be there every step of the way! God’s grace will help and lift you through this journey! I recently gave a talk on The Atonement of Jesus Christ and found the following talk as one of my resources. It’s one of the most wonderful talks I’ve read and is so profound and amazing. I recommend it to you! http://speeches.byu.edu/?act=viewitem&id=251 (David A. Bednar’s talk “In The Strength of the Lord” given at an October 2001 BYU-Idaho Devotional) God bless you sweet Emily!
emily says
April 11, 2013 at 12:56 pmLynda – Thank you! I LOVE that talk!
Rachel Y. says
April 11, 2013 at 11:18 amDallin couldn’t say “Mama” when he was two. So sad. Or even really look at me. He started with early intervention for speech therapy originally due to lack of hearing due to fluid in his ears. Our speech therapist and us soon realized he had other problems as well. He has been to many doctors and though everyone agrees he has problems no one has been able to tell us exactly what. A lot of ideas no definitive answers. He is in second year at a special preschool and he recently started occupational therapy. So thankful he has another year of preschool next year. Sometimes I cry too. Just want to help him and have others love him. He recently started Rhythmic Movement Training. He has only been doing it a couple weeks and only the first few movements. I have noticed a difference the last few days. Our occupational therapist said sometimes it really helps kids while others not as much so she tries it to see if it will help.
emily says
April 11, 2013 at 12:56 pmRachel – Thank you for your comment. I’d love to talk sometime about what therapies you’re working on and I’d love to pick your brain about your favorite gluten-free resources. I’m glad we’re friends!
Alyssa Paul says
April 11, 2013 at 11:53 amOh Emily! My heart is with you right now. There’s one thing I’ve noticed and that is the BEST parents are blessed with the most precious children and I know you and Michael and the perfect parents for Sophie with this trial. I hope you guys get an answer and I know Sophie is in great hands and you’ll do whatever you can to help her. Ever since the Public Health days I’ve admired how kind, smart, hard working, and loving you are and with every post it’s more and more true. You’re amazing and I’m so lucky to know you! Your family is amazing and if you decide to share, I’ll be interested to see how your journey goes. You’re an inspiration and a fantastic model of motherhood for me to follow. Thank you!! You will all be in my prayers.
emily says
April 11, 2013 at 12:57 pmThank you Alyssa. I needed that!
Betsy says
April 11, 2013 at 11:55 amI’m in awe of how strong of a woman you seem to be and how great of a mom you are. I can’t even begin to imagine what you’re going through, but I hope that the thought of countless others thinking of you and your family and praying for you helps to get you through the tough days ahead.
emily says
April 11, 2013 at 12:57 pmBetsy – Thank you so much. I need every one of those prayers and happy thoughts!
Rachel says
April 11, 2013 at 11:59 amOh Emily, my heart broke for you. As moms we all want our children to grow up and be “Perfect” and “normal”. Whatever that may mean. And it hurts when they’re not and we can’t “fix it”. I nannied for a few children with autism during high school, and worked with many as I later became a school teacher, and it’s so hard.. But you and Sophie and Michael and milo can do it, and it will bring you all closer together. I’ll be praying that you can have the strength to get Sophie the help she needs- and that it will help her! She’s a precious little girl.
emily says
April 11, 2013 at 12:57 pmRachel – Exactly! Thank you for your encouragement. I needed it!
Marie Jepsen says
April 11, 2013 at 12:10 pmEmily, You don’t know me but I know your wonderful mother. I work with her in YW. I have a very dear friend that has a little boy with autism. She is a wonderful mother and she has a lot of very good days. Like your daughter he is her oldest and she has had 2 other little boys. He is the best brother. I love being around him. He is in second grade now and doing wonderful. He is so full of life. Your little Sophie is darling and with the parents she has been blessed with she will have the best life. I love your blog and I hope to meet you sometime when you come to see your mom and dad.
emily says
April 11, 2013 at 12:58 pmMarie – Thank you! I’ve really appreciated the happy things others have to share and this is one of them.
Shelley says
April 11, 2013 at 12:11 pmEmily and Michael,
We love you both so much and are so inspired by you! I cried as I read this, knowing only a small portion of what you feel. Jackson has eye problems which we found at 2 months old. It was and is still scary, and at first I thought of every possible thing he wouldn’t be able to do, but then one day my mom talked to me about all he COULD DO! Although he will never be able to fly a plane or be a professional baseball player,etc. he can have a “normal” life, and so can Sophie! She can and will be able to do so much 🙂 We will pray for you. For extra strength, patience and peace.
I have a neighbor (in my home ward) with a son and daughter with pretty severe autism. I believe they are 12 and 10 now. They both attend regular school, they are super smart, are very sweet and live normal lives now. Their parents have just been diligent about therapy and learning all they could to help and it has! You guys can do this and we will help in any way we can.
Love,
Shelley and Jayden
emily says
April 11, 2013 at 12:58 pmShelley – Thank you. Love love love you!
Lauren Hardcastle says
April 11, 2013 at 12:25 pmEmily– I have no advice to offer, but want you to know I admire you and all that you do for your kids! You are a wonderful mother and you will get through this. Thank you for sharing your journey with us. Thoughts and prayers for you all as you figure out this new road ahead.
emily says
April 11, 2013 at 12:59 pmLauren – Thank you so much. Truly, comments like that are SO incredibly comforting. Thank you, thank you!
R. Breuer says
April 11, 2013 at 1:16 pmEmily – I’ve been following your blog for maybe one year and have always enjoyed what you have to say. I won’t pity you, nor will I feel sorry for you. It doesn’t seem to me like that is what you need at this time. But, I WILL ADMIRE YOU!! You seem so strong and determined – you will all be fine – maybe a “different” kind of “fine”, but fine, nonetheless!! I was too afraid to have any children – for so many reasons. Look at you!!! You show us all how you are brave, patient, loving; juts tons of adjectives come to mind!! I don’t know you but I admire you. Hang in there 🙂
emily says
April 11, 2013 at 1:26 pmR.Breuer – Thank you for your encouragement! I appreciate it more than you know.
Anne says
April 11, 2013 at 1:19 pmEmily-
I started reading your blog for the awesome recipes, and kept coming back because I enjoy your writing and the courage you display in sharing your life. I am childless, not by choice, but it is what it is and I’m ok with it now. I worked in the developmental disability field my whole adult life and my advice for you what you already know. No matter what; Sophie is your precious little girl first and foremost. That’s it, pretty simple, she’s just a kid, not a label. Don’t let anyone tell otherwise.
Take good care
emily says
April 11, 2013 at 1:25 pmAnne – Thank you. Just what I needed to hear.
Becky @Love to be in the Kitchen says
April 11, 2013 at 1:36 pmEmily, I just want you to know that I’ve always looked up to you since the first time I met you. I know that Sophie is blessed to have you as a mother. You and your sweet family will be in my prayers and I know things will work out. Love you!
emily says
April 11, 2013 at 1:41 pmThanks Becky! Love you too!
Alison says
April 11, 2013 at 2:33 pmI found your site a while back, maybe through pinterest? Anyway, I’ve been following along because I thought your blog (and your family!) was adorable and a breath of fresh air. When I read the top part of your post, I gasped out loud. I don’t even know you (personally) and I felt so much for you guys. You’re in my prayers and I’m glad that you feel like you can vent to your readers for support. We had a lot of questions in the early years of my daughter’s life (she was verbally & socially delayed as well) and while all seems fine now, I know EXACTLY what it is like to question her future. We’re all here for you:)
Tara says
April 11, 2013 at 3:08 pmI’m so sorry your family has been having such a rough time. Sophie’s diagnosis made me think of this girls blog that I know: http://familyofroses.blogspot.com/ maybe it can be of some help to you. (I’m sure you’ve been inundated with recommendations like this, but just in case it can help I wanted to share :). Prayers for you and your beautiful Sophie.
Meredith says
April 11, 2013 at 3:09 pmHi Emily, You don’t know me. I am a friend of Elisabeth. I will admit to occasionally blog stalking you. I love your writing! I wish I could express myself through words like you can. When I try it always ends up sounding sappy. Anyways, I just wanted to write to hopefully put your mind at ease about a few things. My older brother has some learning disabilities. We are 2 years apart. I know that my parents feared many of the same things you are feeling now. As his younger sister I NEVER once felt like my parents were more preoccupied with his needs over mine or any of my other 5 siblings. In fact, I cannot imagine life without Nathan. I know it is probably hard to lay awake at night trying to redefine life as you know it but you will get to see amazing blessings. You will be floored by the love of our Heavenly Father and gain such a great perspective on how much he loves each of his children. After all he sent Sophie to an amazing and supportive family. Best of luck!
Jessica says
April 11, 2013 at 3:16 pmI think the best thing you can possibly do in this situation is what you have done… share your journey and allow others to love you and support you along the way. As a conscientious and thoughtful mom, Sophie is one lucky girl. Prayers to you and your family, but more importantly, know that you can do this. No diagnosis will ever contain her in what she is capable of, because she has you and Michael on her side.
Stephanie says
April 11, 2013 at 3:58 pmFirst, I wish I could come give you a large virtual hug. I have read your blog, tried many of your recipes, and just loved watching your two little ones each week while I raise my own. I’m not going to say “I’m sorry” because there’s something so negative about those words- as if there’s something “wrong”. What I will say is I am sorry for the loss of the dream in the way you envisioned it. I am a teacher, I see children all across the spectrum, and I want you to know there is so much love and life possible for your daughter. There was a little boy in my school a few years ago who was SO loved, so cherished by the other students. I currently am teaching his brother and while what you fear for Milo is somewhat true (a lot of attention will be devoted to your daughter as you handle this), know that your son will be fine! The little boy in my class is just lovely and is no worse for the wear. In fact he is compassionate and kind. I wish you strength in this journey and I applaud you for being honest and open- there are thousands of people where you are and this post will help you to connect!
Nicki says
April 11, 2013 at 4:07 pmNever give up hope! I see miracles every day with autistic children. I have a student that didn’t start speaking until she was 3. She recieved early intervention and now (2nd grade) she is probably my brightest student and has a huge vocabulary. In fact she is being tested out of SPED. I know every case is different, but there is so much hope. You are doing an AMAZING job! Love you and your adorable family!
Natalie says
April 11, 2013 at 4:22 pmEmily,
Although I don’t personally know you, I feel like I do from your blog. I always look forward to your posts and have missed seeing regular ones. I read your post and cried 🙁 I am a mom and can imagine how difficult this must be. All your concerns are the same I would have and yet we know God is bigger than any of our problems or concerns. He placed Sophie in your family for a specific purpose and He will equip you as parents to handle the challenges that come your way.
Thank you for sharing something so personal, but it allows your readers to love on you and pray for you 🙂 You have a beautiful family and both those children are gifts from God.
Have you ever read this? http://www.our-kids.org/Archives/Holland.html Are you familiar with the book called Bloom by Kelle Hampton? It is a beautiful book and I think you would enjoy it.
Your family will be in my prayers. Please keep us posted. Blessings and hugs to you!
Heather Miller says
April 11, 2013 at 4:34 pmEmily,
Hi sweetheart! I am one of Elisabeth’s close friends here in California and have avidly read your blog. Elisabeth told me a few months back that you were worried about Sophie’s speech.
We are just a few months ahead of you in this process with my son that just turned two in December. Been there too sweetie, I can remember sobbing in my bathroom taking a tub, feeling so discouraged. I know you are totally inundated with comments, but I just wanted you to know that you are at the worst part! It will all get better from here. I have put Jude on a whole bunch of probiotics and supplements, as well as the diet (which we’ve seen huge improvements on – just saying. I know everyone has an opinion). But if you ever want to know what we are giving Jude, or who we are meeting with, you are more than welcome to e-mail me whenever! Maybe Sophie has never had a sensitive stomach so you aren’t worried about that.
This totally blind sides us, and I have three boys! A newborn, a two year old, and a three year old! So I totally know about time constraints! It’s so discouraging to hear, “Hit it hard!” Then as the days, weeks, months go by and you are constantly feeling that you need to be doing more and you can’t ever let up!
Keep your chin up! Remember still take some time for yourself, I said I would but it’s really, really hard and painful almost doing anything for yourself – especially when you feel like ‘Im fine! My daughter is the one that needs everything!
My husband and I have grown really optimistic about some of the resources we have found. Feel free to reach out!
Heather Miller
Katie Carter says
April 11, 2013 at 5:27 pmEmily – I love you so much and am so blessed to have you as my Sister! You are an amazing woman and mother, and Sophie and Milo are so lucky to have you as their Mama!
Miss Michka says
April 11, 2013 at 5:59 pmOh hon, I just want to hug you. I have only recently started following your blog a few weeks ago and I get so excited for Friday mornings as I wake up to a new post from you. Even though I live in Sydney Australia, a million miles away from you all, you have a special place in my life. I wish I could take all your pain away. I wish I could do more. I guess I just want you to know that you are in my thoughts, that I am sending you all the positive vibes that I can and that I am here to support and encourage you all.
Keep smiling
MIchxxx
Krista Bringhurst says
April 11, 2013 at 6:06 pmI just wanted to say how much i admire you. You are an amazing, amazing wife and mother. I’ve always been so happy for Michael that he found you. I will be praying for you guys. Love you both.
Jane says
April 11, 2013 at 6:16 pmI heard this many years ago and it has stuck with me all this time. I thought it might be helpful.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
Heavenly Father chose you and Michael to love and care for His very special daughter. I love you, sweet Emily.
Kassi says
April 11, 2013 at 6:54 pmEmily,
Sophie and Milo are so blessed to have parents that love them and have their best interests at heart! As someone who was diagnosed at 2 with autism and and spent many years with my “friends” from ECS I can tell you that I am now 26, married, with a college degree and professional job. The therapies are truly incredible and will give you, Michael, and Sophie the tools for her to have a remarkable life! You will all be in my prayers!
~Kassi
emily says
April 11, 2013 at 7:14 pmKassi – Thank you SO much for your encouragement! You inspire me!
Patty says
April 11, 2013 at 8:05 pmEmily, I truly enjoy reading your blog and you are such an inspiration to me. When I read this latest post my heart broke for you but I know that our Heavenly Father will continue to pour His love and blessings over you and your beautiful family. I do not know much about autism but I served in a 2yr old bible study class for a year and one of our little boys in the class was diagnosed with autism early in the school year. I can tell you that God put a special love in my heart for that little boy! God will do the same for your precious little Sophie! She will be surrounded by people that will just pour love and kindness into her life and help her along in this journey. God delights in giving abundantly.
Kacey says
April 11, 2013 at 8:05 pmEmily, I’m friends with your sister Elisabeth and I’ve read your blog here and there for a few years. I just wanted you to know that as a high school art teacher and a private teacher for early elementary age kids, I have had many students with autism. And they are honestly the ones I hold closest to my heart. The most talented student I ever had was autistic. The smartest student I ever had was autistic. The funniest student I ever had was autistic. The most loving student I ever had was autistic. They each faced different obstacles, but they all had amazing qualities, too. Sophie will have weaknesses, but she will also have great strengths. There will be mean people…but there will also be kind, understanding, loving people. (Isn’t that true for all of us?)
Michael Tompkins says
April 11, 2013 at 10:01 pmPlease contact me directly at my email. Thank you. Michael
kaygo@live.com says
April 11, 2013 at 11:14 pmEmily, you have your first miracle and her name is Sophie. She is beautiful and her eyes speak volumes. Will your life be normal probably not but you will be enlightened and enhanced with our dear and beautiful Sophie. She will teach you love, patience, insight, creativity, faith and most of all unconditional love. God gave you both Sophie and Milo because He knew you were up to the task and that you have friends not only on site but on line who have fallen in love with you, Sophie, Milo and your husband and are willing to be there for all of you. God bless dear sister and put your faith in God for He is the Miracle Worker. Love, Kay
Mindy says
April 11, 2013 at 11:59 pmEmily,
I found your blog a week ago…so glad I found it so that I can be another woman to encourage you and hold you up in prayer.
My younger son has ADHD. While that is not as extreme as Autism, I find that some of his struggles are very similar to those on the Autism spectrum. I sympathize with you in your grieving for what/who you thought your child would be. I know the fear and the reality of being judged or excluded…
But we have worked so hard with him. He is now almost 12 and is a delight- he is brilliant and has matured so much in the last year. And I have learned that it is not about me and my desires for him. He is his own person. And I may not always understand him. But I love him. SO much. I feel blessed that God chose me to be what he needed.
So I will be praying. Praying for peace, wisdom, endurance. You are a very special Mom.
~Mindy
Cassie says
April 12, 2013 at 5:40 amYou are so strong, Emily! A you are right that God does perform miracles and he will definitely give you the strength you need every day. Keep us updated. Thank you for sharing this!!
Jessica says
April 12, 2013 at 5:57 amYou are a wonderful mom. Sophie (and Milo) are so lucky to have you. I have two amazing younger brothers who have autism. Sure, they are a lot different from some of their peers. One didn’t walk until 2.5 and was completely non-verbal until he was almost 4. But they have taught me everything about being happy with who I am in a world that likes to squeeze everyone into cookie cutter molds. Sophie has a bright and amazing future that will be so exciting to watch unfold. My prayers are with you as you walk with her! (Oh and my brother is graduating from high school next month from an alternative program that walked with him at his own pace. I couldn’t be more proud.)
Where Did The Bird Go says
April 12, 2013 at 6:14 amEmily!
My sister shared your blog post with me and I am soooooo glad she did! Your story rings so true in my my mind. Brings back a whole room full of memories. Memories that are sometimes hard to relive, but in the same breathe refreshing to relive. How can they be hard and refreshing? Hard because no matter what the situation, you hate to see your children have to suffer. Refreshing because as the months progress I realize those hard moments had to be experienced to get Cali where she is today. Sophie is so fortunate to have you as a mother. She is fortunate because of the amount of love and determination you have for her. The therapy will bring out things in Sophie y’all have never seen before. She will be just fine. I promise! This doesn’t mean that the autism will go away. And to be honest I don’t ever want the autism to ever fully go away. Cali has so many unique qualities stemming from the autism. Her crazy good memory, her innate empathetic character, her OVERLY friendly approaches to EVERYONE!! All I want is for Cali to become her best self, and guess what she is. Guess what else…Sophie will too!
Thank you so much for writing this piece. I am holding a gala for my daughter’s treatment center this Saturday and reading your post gave me such great thoughts for my speech. Thank you!!!
I love your post so much I was hoping you would like to share it on my blog on the segment Friday’s Sweet Signs of Hope! I know you guys just found out, but I think that it the beauty of your hope story. You are able to have hope in the very beginning when so many moms wait years to find that hope. Let me know what you think. Here is a link to one of the most recent posts http://wheredidthebirdgo.com/2013/04/fridays-sweet-signs-of-hope-max/
Talk to you soon Emily!!!
Where Did The Bird Go says
April 12, 2013 at 6:21 amIn fact…email me. If you guys live close, I would love to have y’all join us at the gala!! Going to be a special night!
Diana says
April 12, 2013 at 6:50 amI have an autistic step-son and your response to your news sounds a lot like our response when we received the same diagnosis eight years ago. Eight years later, I can not say enough wonderful things about early intervention (our time with early intervention was limited also) and how thankful his mother, father, and myself are that we started early and addressed it head-on. We all still have moments of “will he be able to . . .?” and I think we always will, but he amazes us every single day. The blank, unresponsive times are hard but we’ve been able to find ways to work through them (working with a great team). Yes, it has changed all of our lives and part of what makes autism so hard is that we don’t know why it happens (so we blame ourselves), and every case is unique so there’s no one-size-fits-all treatment (so we pull our hair out trying one thing after another). Overall, we have a healthy family life that has trials just like any other family, even if our trials are a little different. I would be happy to discuss our journey with you, it’s much too lengthy for a blog post comment. Keeping you and your sweet family in my thoughts.
Jordyn says
April 12, 2013 at 7:35 amI love reading your blog, Emily, and I am praying that God will give you and your family strength to get through the journey ahead. You seem like a wonderful mother and Sophie is lucky to have you. I think God gave you this wonderful, special child because he knew you and Michael would be the perfect parents for her. Thank you for sharing your story!
Nicole@HeatOvenTo350 says
April 12, 2013 at 8:33 amSophie is lucky she came to two such wonderful parents. Thank you for sharing so openly about autism. Praying for your family to continue to have the little tender mercies that bring joy to life and make burdens lighter.
alisha says
April 12, 2013 at 11:57 amI just found your blog through your Aunt Lisa. First, I am so sorry. I have no idea what it feels like and it must be so hard. Second, I used to work with a little boy who was diagnosed with Autism. We did the ABA, applied behavior analysis. When I started teaching him he was echolalic, but when I left (9 months later, to serve an LDS mission) he could speak to me. I know there is a wide spectrum in how sever autism can be, but it was so cool to watch this little guy learn skills to help him interact with other children and adults. It was a great experience. I’m sure you are getting all kinds of advice and help and information about programs and such, but I thought I’d throw this out there… and his mom is amazing, she told me that if you want I can give you her number. Email me if you’d like it. Lots of prayers going your way.
Shannon says
April 12, 2013 at 5:43 pm“Tears are alright. They are the price we pay for love, care and compassion in the world.”
Elder Holland
I don’t personally know you (I am friends with your sister) but I know you can do this and that you can do this so well! Sophie and Milo are so blessed to have you for their momma!
Lindsay says
April 12, 2013 at 5:50 pmEmily, I have read your blog since our first daughter was born in 2010. I am inspired by your recipes but also by your mothering – your patience, your strength, your imagination, your creativity. All of those strengths will serve you well in this next chapter of your journey.
I have no direct knowledge of autism except to say my father was an elementary school teacher for 35 years and if you asked him now, 15 years, after retirement to tell you about the student who still stands out in his mind, he would tell you about William. A fifth grade boy with autism he taught the year he retired. Not because William was difficult but because he challenged my dad to be a better teacher, a more understanding person, at the end of his career when his colleagues were coasting along he was trying to find ways to help this little boy who was a whiz at numbers and languages but struggled with basic things. I was still home then and he often came home at the end of the day with a William story and a chuckle. He was not a burden or a bother, he was an amazing little boy. So yes, your beautiful girl will probably struggle but she will also cross paths with people and change them, force them to see the world differently, to love more freely, to be more compassionate, more understanding.
Our family will pray for yours. Sending you all of our strength and hope and faith. God bless you.
elisabeth says
April 15, 2013 at 8:14 pmLindsay,
I don’t know who you are or if you’ll even see this comment.. but I think this is my favorite comment so far. Bless you!
Love, Emily’s sister
ginger says
April 12, 2013 at 7:26 pmBless you. I understand. I am a therapist. I am sure it is very emotional for you. When you are ready, perhaps you can seek out parents with the same challenge, I know there are support networks out there for that, but I don’t know the names of any of the top of my head. Wishing you the best, Ginger.
Katie b says
April 14, 2013 at 10:43 pmI’ve been thinking and thinking about you guys these last couple days. What I keep coming to is that Heavenly Father sent this beautiful soul to two of the most loving parents there are. And even though her future won’t be quite what you imagined, it will still be wonderful. I heart aches for the challenges you’ll face but I am just so happy that Sophie has you to guide her.
Courtney says
April 15, 2013 at 6:08 amHi Emily,
I have been in your exact place. Only I was newly married and 19. I kept asking everyone, why would God give a 19 year old an autistic child. Carter was 2 1/2 and freshly diagnosed when we had our second son. We have survived though! Carter will be 10 years old this summer and will be in the 4th grade. The terrible tantums will stop. As soon as she can tell you what she is wanting and the early intervention therapies are so helpful. I really had a negative attitude about it for a couple of years and now I am thankful it is autism and not something worse.
EllenL says
April 15, 2013 at 7:34 amI want to thank you for relating your experiences so honestly, and eloquently. It will help to spread understanding and acceptance, and also brings to light the need for services for children and their families. I hope you know you have the respect and support of many “Internet friends” like me. I came for the food – and stayed to watch a loving young family grow. Best wishes to you, Emily, and to all of your family.
Kari M. says
April 15, 2013 at 8:24 amEmily, (Sorry I know I’m way behind on reading your blog post.) You are such a strong woman and I admire you. Little Sophie will look up to you her whole life. She and Milo are blessed to have you and Michael as their parents. I will keep y’all in my prayers, and I hope the doctors will be able to help sweet Sophie. I’m sure each day will present a new struggle, but I know the Lord is always with you and will help you find the answers you are seeking. I am grateful for your friendship and am here if you need to just vent a little. 🙂 Thanks for all you do and for sharing your experiences on your blog.
Robin B. says
April 15, 2013 at 8:25 amYou and Michael are the parents that Sophie needs and we all know you will do your very best to help her, and Milo, as they grow. I think of that saying about motherhood, that it means your heart will forever walk outside of your body. And remember to take care of you (and Michael), find some support groups and take time for each other. Lots of hugs!!
Brianna says
April 16, 2013 at 11:12 amSophie is a beautiful child and although she will face difficulties in her life it is clear she has a strong support system to help her get through. Make sure that when you see to the needs of everyone in your family that includes you. Autism does not define who Sophie is, it’s just one of her unique qualities. Take care and God bless.
Jade says
April 16, 2013 at 1:56 pmEmily, I love you and your sunny outlook on life. Things will be okay because He is in charge. Sophie is a beautiful and wonderful addition to your family. I wish we were closer so we could hang out cause I would totally still hang out with you! Everything will work out even if its not
easy.
Love you guys,
The Joneses
Kelly @ Life made Sweeter says
April 17, 2013 at 4:47 amI love your blog Emily and have always enjoyed reading updates about Sophie and your family – especially your Friday posts. You and Michael love Sophie with all your heart and you are such a great mother (it shines through in your posts) and that love will get you through all the ups and downs along the way. Thank you for being so brave and sharing your story, I don’t have any direct experience with autism but I just wanted to show my support because your blog is so inspiring to so many people for all your parenting tips and recipes. Best wishes to you and your beautiful family.
Ana says
April 19, 2013 at 11:14 amKeep a smile on your face, your heart grateful. Your life is full of blessings and many more to come. I have been following your blog for years now and I must say I hope to be a mom like you some day. Sending you a great big hug for being a wonderful person. Be kind to yourself too.
Melissa and Nate says
April 19, 2013 at 5:33 pmOur hearts/thoughts/prayers have gone out to you and your family. She is so cute. I know that the Savior will make everything right in the Lord’s time.
Kat says
April 20, 2013 at 2:35 pmI’m sure you’ve been inundated with resources, but here’s one more that might help: Let Me Hear Your Voice (http://www.amazon.com/Let-Me-Hear-Your-Voice/dp/0449906647), which was written by my boyfriend’s aunt, is a fascinating read and sure to inspire hope (and who couldn’t use more of that??). Saying prayers for you and your sweet family
Esther says
April 20, 2013 at 7:55 pmHappy birthday Sophie, you are beautiful, we send you our love and prayers.
SARAHLAMB says
May 21, 2013 at 4:24 pmHi Emily,
I linked to your blog to get your rhumbi rice recipe and saw the spot about your daughter being tested for autism. My son is 3 and autistic. He is non verbal and makes almost 0 eye contact. We started ABA therapy (free) through the autism waiver program through the state of Utah and it has made all the difference in the world. He has started talking in just 1 month of therapy. We started him in early intervention when he was 2 and they were sweet with him but the real changes happened with the ABA therapy. I just wanted to give you a heads up so that when your daughter turns 3 you can have all your ducks in a row for the state funded program. If you ever want to talk about it feel free to contact me. I bugged alot of really kind people who let me hound them with questions..youre not alone, and things will get better..autistic kids are hilarious, sweet, and angelic and I would never change a thing about our life with our little Edward. Good luck and keep your head up!
Katie Weston says
May 27, 2013 at 6:21 pmEmily, I haven’t read your blog in a long time, and I am just now realizing what is going on with your family. My heart is with you, my dear! What a hard thing. I haven’t caught up on what has happened since this post, but just in case no one has sent you this link, I wanted to do so. This man has done so much amazing work with autistic children. http://www.stankurtz.com/ Much love, Katie
Amanda says
May 31, 2013 at 4:13 pmThe words that come to my mind are: For such a time as this. Sophie is here for such a time as this. And YOU, as her mother, (and Michael, as her father), are also here for such a time as this. I know that the adjustments to your new life will continue–but I also know that because of the talents and gifts you have developed in your life, you are an amazing blessing to both of your children, as well as to others going through similar experiences. You are right. God is good and aware of you. He gave you Sophie–but I think more importantly, he gave Sophie YOU. And you are just what she needs.
emily says
May 31, 2013 at 5:39 pmAmanda – Thank you. What a sweet, sweet thing to say. I needed it today!
Madison Ellingson says
June 7, 2013 at 5:32 amEmily, your post made me bawl! My heart is full for you. I am due with our first little girl in a month and felt an overwhelming love for you and your little girl while reading this. We send our thoughts and prayers to you! 🙂
Heather Stefan says
June 10, 2013 at 12:08 pmEmily,
I have cried your same tears..I have a 3.5 year old daughter, Cate, who each day surprises me with her many gifts. What I can tell you most (she is my youngest) is that you will cherish each accomplishment more than most parents. The little things will seem so big! Celebrate those moments! And, never worry about other people or other kiddos at the same age (I still struggle with comparisons to other kids or between my other daughters and Cate)–I, too, have much thicker skin. God gave Sophia to you and your husband because you were the perfect parents to fight her fight. May God bless you and your beautiful family!
MK says
June 30, 2013 at 11:18 pmI stumbled onto your blog for a recipe, and couldn’t stop reading. You are a very talented writer! Your story resonates with me — and I send you many thoughts and prayers. My son was completely nonverbal at 2 … no mimicking, preferred independent play … but had good attachment to myself and my husband. He was diagnosed with Childhood Apraxia of Speech (a relatively new diagnosis — and one which requires specific speech therapy) … With a very talented play-based speech therapist … many of my personal fears have been allayed … Now at almost 3, he speaks in 2-3 word sentences — with poor pronunciation but he speaks! … I have read that some children with autism also have apraxia and it may be worth checking into. Warmest wishes on this journey.
SWM says
July 7, 2013 at 11:20 amemily,
i feel like i know you and your family from your blog. i read this update and sobbed. even as a mom to soon to be 2yr old, i cant even begin to try and understand how this must be for you and your family. I know for sure there are miracles in this world and there is a God,who in his wisdom made you and Micheal Sophie’s mom and dad. you have the strength in you . Take heart and one day at a time…hugs
Jamie says
July 8, 2013 at 8:34 amEmily,
Your post was really touching to me. I cried here at my work desk while reading it. I have a brother, 16 now, who has autism. For me the questions of, “will he ever…?” never really go away, but he never stops exceeding my expectations. School is difficult for him and friends are even more so, but he is a beautiful person, so full of love even when he doesn’t always express it. He loves vacuums and could tell you about any make or model. Anyway the reason I wanted to post this is to tell you that he is a blessing in every life he touches. Autism is difficult, but I think it is reserved for very very special people. I can tell from following your blog that you and your family will do well with any challenge you may face.
Erin says
August 19, 2013 at 10:42 pmI came across your blog while looking for gluten free recipes and I had to just leave you a note. I have no doubt – not even knowing you at all- that your faith and your family and your fierce love for your children will pull you through any storm. How lucky that little girl is to have you as her mother… I wish you continued progress with her every day…remember even little “baby steps” count! :-} Will be praying for your family and wishing you many more smiles, good days and laughter ahead.
Lizzie says
September 7, 2013 at 8:51 pmI read your blog several years ago when you were doing the 101 things in 1001 days. I recently stumbled across it again and saw this post. I admire your hoensty, courage, faith, and determination to make your sweet daughters future bright. Have you heard of Temple Grandin? There is a movie titled after her name and it is incredible. She is such an inspiration to me, and those struggling with autism. If you watch this movie I promise you will have more hope ahead. Thanks for your posts!
bianca says
November 4, 2013 at 5:55 amWe’ve been there, and know all you are going through. There is hope and we can see it in our Carson. He is 10 and right now the only sign is his social skills are not where they should be, but praise the Lord he is doing great. It has been a long road for my son and his wife, yes lots of therapy and diets, but it has been worth it. He went from eating only bread to a better good eater of every thing within his limitations, he still is on a gluten free diet that has been amazing. It was very hard at the beginning, but it works. The first book we ever read was given to me by a neighbor and it was like some one just opened a window and let the light in. Obviously, we took it as a guide line because we could not do every thing this mom had done, but it was the beginning of our knowledge to be able to help him. The book is from Lynn Hamilton, and I have heard her on Focus on the Family, she says she has cured her son. Not sure about the title it has been a long time since we read that, but I think it’s called Facing Autism. My prayers go out to you and your little girl. The road it’s hard but the reward will be sweet. Blessings!
emily says
November 4, 2013 at 7:51 pmBianca – Thank you for your sweet comment. It’s so encouraging to hear success stories and to look forward with hope! I wish you and Carson all the best!
Penne Mahin says
April 14, 2014 at 5:54 pmHas your daughter recieved her MMR shot?
Angela L says
August 8, 2014 at 7:17 amI came across your blog through another blog I found on Pinterest. (My how that site leads you to other blogs you would have never found on your own). I read this and relived my experience with Autism. My two sons (10 and 4) both have Autism. Our journey started in 2012 when my youngest (then 2) was non-verbal, and had signs of Autism. After months of testing and visits to a child psychologist, we received the diagnosis of Autism. She then asked to meet my oldest son, because during the process for my youngest, things had come out that I had said “my oldest son flaps/fidgets I just assumed it was a nervous tick. My oldest son (who was 8 at the time) does square roots, and algebra for fun. My oldest son has a hard time with his peers because he doesn’t understand the social cues.” A few months later he was diagnosed as well. Our life forever changed, but we honestly wouldn’t have it any other way. They teach us SO much about life and how they experience it through their minds/eyes.
8 months ago, my youngest finally started talking. He talks so fluently, creates stories that blow our minds, and has come a long way, thanks to all his therapies and our hard work, as well as his hard work. I’ll for sure be bookmarking your blog and checking it out. Thank you for sharing your story and experience.
emily says
August 8, 2014 at 7:51 amThank you so much for this. Few things brighten my day like hearing the good and wonderful stories of other people on the same path. Thank you!
Indigo H-L says
October 4, 2014 at 11:51 pmI just have to say, that as a college student who spent the summer working at Ramapo for Children (summer camp for children with autism and other special needs) there is nothing more challenging or beautiful or overwhelming or pure or perfect than these children. I have never laughed or cried so much in my life. Their hearts grab onto you. They may not use their words, but they often communicate in much more powerful ways. I had situations where I walked away feeling at a loss, baffled, or sad, only to look back weeks later and see how much love and beauty was communicated in a seemingly empty moment. The girls in my bunk brought out the best in me. They taught me more than any other experience in my entire life has ever taught me. Through them, they showed me the truest love I have ever known. Their hearts and their passions and their worries and their fears, everything is lived out loud. And learning to look for it, maybe in a different way than we are used to communicating, has been one of the most meaningful experiences of my life. My heart goes out to you. My prayers are with you. I believe that God works all things together for HIS good, and I believe that Sophie IS fearfully and wonderfully made, JUST the way she is. Talking or no talking. Blank staring or not. Friends or not. She is loved. She will bring you the purest joy. And God will bring Her the purest joy. I believe that with my WHOLE heart. And, how PRECIOUS is she????? My heart can barely stand it. Much love to you <3 <3 <3 xoxox Indigo
Karen says
January 30, 2015 at 1:44 pmhi. My heart goes out to you. My oldest son was diagnosed with autism at three and half. Therapy is time consuming and expensive. Worth it when you see the changes big and small. I cried when I read this, since I also understand the new and different life. Loving this new life is hard at times. So glad you have good family support.
Ashleigh says
November 12, 2015 at 8:24 amI wish I would have seen your blog before the barre night. I have a little girl who I’ve spent many sleepless nights thinking and worrying about. Super quirky behaviors, sweetest as can be, marches to the beat of her own drum. Isn’t it amazing what life throws at you?!? She is not extreme in her behaviors but “ordinary” things like play dates are so hard and take so much out of us. Sophie is lucky to have you! And it was so great meeting you the other night!
Alan K says
August 8, 2018 at 9:14 pmEmily,
I started reading your description of Emily’s challenges, and it was too moving for me to finish—heck, to even get to ~1/3 of the way. All I can say is that the past and the present’s aspects that are not what one might hope for do NOT mean those aspects will be as strong in the future. Esp. when compared to the joy, satisfactions and contributions that Emily WILL give to you, the rest of your family, and to the people she interacts alot with. And I hope she’s already giving indications of these future gifts.
Amidst your family’s challenges, I give you knowledge that I wish the best to, and expect alot of good things to be added to those blessing, your family!
Sincerely,
Alan K
Emily says
August 9, 2018 at 5:48 amAlan, Thank you so much for your comment. Sophie is 7 now and she’s doing SO INCREDIBLY well! She’s bright, funny, clever, creative, and FUN. She’s got an excellent vocabulary, a great relationship with her brother and family, has friends at school, is working on the school’s gifted program, and has all sorts of hobbies and interests. It’s better than anything I could have ever imagined. The difficult challenges that we began with have become blessings we are so grateful for. I wouldn’t trade her (or this experience) for anything!