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
Emily,
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!
I 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.
emily,
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
Emily,
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.
I 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.
I 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!
We’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!
Bianca – 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!
Has your daughter recieved her MMR shot?
I 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.
Thank 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!
I 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
hi. 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.
I 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!
Emily,
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
Alan, 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!