“Severely Autistic”: Coming to Terms

Today, I heard words that broke my heart.  Severely Autistic.

“Your son is severely autistic.”

I wanted to rewind the day, go back 4 hours,  and cancel the appointment, but I couldn’t.  It was already done and the words were said.  I kept a strong face because I was alone with Ethan and his doctor.  Ethan didn’t need to see me upset and I wanted to remind the doctor how strong I have been throughout the last 4 years.  Strong.  I have been so incredibly strong and positive.  Or at least I have tried.

These past 4 years have been hard.  Really, really hard.  Despite the difficulties, I have always tucked my feelings away where no one else can feel them or see them.  I didn’t want people to feel bad for us or to think differently of us.

My son went from “mildly autistic” to “severely autistic” in a matter of moments, in terms of diagnostic labels, of course.  To us?  He is still Ethan.  Ethan is amazing.  And difficult.  Ethan is lovable.  He is also so far away.  I want to pull him closer.  I want to hear him say “I love you” and mean it.  I want him to tell me how his day went.  Or talk to me about his feelings.  I want him to not have meltdowns every day.  I want him to play. I want him to giggle because he means it.

I want all of the things parents want from their children.

Those are MY wants, but Ethan’s wants are more important.  I am being selfish for asking these things of him.   My wants may never happen, and I need to come to terms with that.   My wants are different than my desires for happiness.  Happiness can easily be obtained if you allow your “wants” to change along the way.   My “wants” need to change.

What an amazing little boy I have.  He is going to be 5 years old soon and he has amazed us every step of the way.

I just tucked Ethan into bed…the same Ethan that I tucked into bed last night,  and he will be the same Ethan I will tuck into bed tomorrow night.

  • http://www.blogger.com/profile/05214893480802825646 Sara

    He is so adorable.

  • http://www.blogger.com/profile/06050719821003153432 gluten free momma

    Firstly, I’m sorry. If it helps, I’ve been there. It gets easier. And one day, out of the blue, he’ll say it. He is an adorable little boy!

  • http://www.blogger.com/profile/14432707984324314004 Kristen Turner

    Do what is best for your family. My brother has Ausberger’s syndrome (form of autism). Your attitude is beautiful and I know you will make the best right decisions for your son and your family. What a sweet little boy.

  • http://www.blogger.com/profile/08639056100222531138 Jen@thecraftingfiend

    oh! I want to give you a hug! He is ADORABLE and I’ll keep you in my thoughts!

  • Kristen

    You are both so amazingly beautiful and strong, inside and out! This world needs more of people like you and Ethan.

    <3

  • http://www.blogger.com/profile/10293618399788920270 Brandi

    You are an amazing and strong woman. You have a gorgeous family and it’s completely evident how much you love them. You’re such an inspiration as a momma. Hugs!

  • http://www.blogger.com/profile/10290971099500084737 Leslie

    My eldest son is Autistic and I understand your place. (((HUGS))))

  • http://www.blogger.com/profile/02299722581945652315 onecraftymomma

    He is super cute! You are a strong strong mother and woman! Autism is not the end of the world, although it may seem like it right now. You are so awesome for saying how Ethan is still Ethan, no matter what he is diagnosed as, and that is SO important. Love him for who he is, not the label that is given to him.

  • http://www.blogger.com/profile/04232874706796878875 Kristi3Boys

    Oh Hayley ((hugs))! You have been so helpful, inspirational, and caring when I experienced Ike’s diagnosis. It’s a rough road forever but the earned smiles make it that much more worth it. I look to you for guidance and support since you are seriously the strongest person I know. Ethan is a beautiful boy who touches and will touch the world in a beautiful way <3

  • http://www.blogger.com/profile/08892322858888262508 Lindsey

    You have an absolutely beautiful attitude. Your adorable little boy is lucky to have you for his Momma. My prayers are with you and your family during this tough time.

  • http://www.blogger.com/profile/08892322858888262508 Lindsey

    You have an absolutely beautiful attitude. Your adorable little boy is lucky to have you for his Momma. My prayers are with you and your family during this tough time.

  • http://www.blogger.com/profile/08436571420215943287 Ashley

    Beautifully written, Hayley! That’s your boy! You’re doing a great job, and you are exactly what he needs. Much love to both of you. Continue with the strength and patience and I believe each of you will get some, if not all, of your wants one day.

  • http://www.blogger.com/profile/00037618884442987553 Heidi @ Buttons and Butterflies

    ((((HUGS))) from afar! If there is anyone that can be a special mom to a special boy….I am confident it is YOU!!!!! Love and hugs!

  • http://www.not2us.net/ Lindsay

    Hayley,

    I’m a complete stranger, and I found this post through a link from a friend on Facebook. However, I just wanted you to know that your son is beautiful, inside and out, and he is blessed to have you.

    I hope you have someone with whom you can be weak…someone who can hug you at the end of hard days and let your tears fall on their shoulders. I hope you also have someone who will rejoice with you on the good days…someone who will understand the sheer power of every victory Ethan accomplishes, someone who will cherish Ethan’s happiness (in whatever form) as much as you do.

    I’ll be thinking of your family and praying for you all. God bless you.

    ~Lindsay

  • http://www.blogger.com/profile/09867948148993066214 Ashley

    I have no expierence with Autism but i just wanted to say you are an amazing mother to an amazing son. At the end of the day Ethan is Ethan your amazingly wonderful little boy. Life is what we make it and so far you are making a wonderful life for your children. Gracefully gliding over speedbumps carving out your path. You guys are so very special. Sending warm wishes and happy thoughts…and of course HUGS!:))

  • Anonymous

    God bless you and your son.

  • http://andydowntherabbithole.com/ Andy

    We are just starting to run the diagnostic gamut ourselves and this is the same philosophy that my Darling and I have been holding onto. That no matter what the diagnosis Master X will still be who he is, but the diagnosis will enable us to get better help for him. Now that you have the information hopefully you will be able to access better services and more help for both you and him to make things easier.

  • http://www.blogger.com/profile/00234421029665169718 Sandy

    Ethan is an adorable boy! We are not our labels. We are precious human beings. He is blessed to have you for his mother.

  • Lynda

    I have worked with and taught children with autism for nearly 20 years. I need to tell you that as much as it causes you pain now, you may someday find the diagnosis of “severe” as opposed to “mild” a small blessing for your beautiful boy. When a child with autism is spending time in his own world of self-stimulation and perseveration he is often unaware that he is “different.” I know it causes pain for you and all of those that love Ethan, and I hope I’ve correctly expressed what I mean to say. You will be in my prayers as you embark on a journey that will be bumpy but often rewarding.

  • http://www.blogger.com/profile/00710436902260200025 Miggy

    Hayley,

    I don’t remember how I stumbled upon your blog, but here I am.

    I am a mom to two girls–both beautiful and amazing. My younger daughter was born with limb differences on all 4 limbs. She has no functional hands, and her legs are extremely short, different lengths with no proper hip joints. Even though her anatomy hasn’t changed since she’s been born it’s taken me a while to come to terms with the fact that these aren’t minor differences. Weird right? For some reason I didn’t want to seem complaine-y if I described her as having “severe” physically disabilities. Being a special needs mom (as well as just a mom) has it’s rollercoasters.

    Anyway, what I really wanted to say is that each Friday I do a special needs spotlight on my blog. It’s become a great series that has meant a lot to me and my readers. If you’d be interested in participating please email me at thislittlemiggy at gmail dot com. You can go to my blog to see the other spotlights. Hugs to you mama.

  • http://www.blogger.com/profile/12505826655649361222 Centsational Girl

    Oh Hayley, how hard it must be to hear those words, I cannot imagine the difficulty you’re going through. My heart goes out to you that you will feel the strength you need. Sending you my prayers.
    Kate

  • http://www.blogger.com/profile/09282727041789711703 Karen – Adi McAva

    This comment has been removed by the author.

  • http://www.blogger.com/profile/09282727041789711703 Karen – Adi McAva

    As I read your post it was like reading my own thoughts from oh so long ago! My gorgeous son Elias, now 18 years old, has sever autism also.
    It’s been a long road to where we are now but we have made it, relatively unscathed ;)
    Some days are diamonds, some days are stone but we become stronger and that is what our little men need us to be!
    I waited 9 years to hear thoses precious words ‘I love you Mummy’ and I now hear them every day… mostly Elias just says it by rote but sometimes, he will tell me from his heart. So, stay strong, try to keep seeing the positives and remember that it does get easier down the path :)
    Hugs from Australia, Karen x
    PS Elias’ behaviour was a nightmare when he was smaller – from the moment he opened his eyes til he closed them each day, he was throwing tantrums, going beserk, running off on me, wrecking everything he touched, etc – now he has the odd outburst but nothing like the tornado of terror we used to know. There are so many more avenues available to parents of children with autism nowadays so just keep searching, you’ll find the help you need for your little man x

  • http://www.blogger.com/profile/11656085073488075683 Jaclyn

    I found your blog through a google search for a bumbo (or rather, “foam seat”) cover tutorial…thank you by the way!

    I can’t imagine what it’s like to hear those words, and I’m so sorry that your family will have this path in life to walk. I work with adults that have autism/aspergers/downs syndrome/and other developmental disabilities. They are some of the most loving and sweetest people I know. I always feel that even though I am the “teacher”, my students teach me so much more than I teach them…and they have had such a profound impact on my life. I have such an admiration and respect for the parents of my students. You are stronger than you know!

  • http://www.blogger.com/profile/14836556538261454746 Jeanette

    25 years ago we were told that our son was severely mentally retarded. We refused to accept that label and just continued on doing the best that we could for him. He attended private and public school and has been seen by many therapists along the way.

    Today Ty is a loving wonderful young man with an amazing sense of humor who is loved by all. Is he “Normal” – absolutely not. But he is happy and loved and an immense joy to our family and everyone who meets him.

    Labels are just words and not a prediction. Every day will bring new challenges and joy to you and your family. Take it from someone who knows. Just keep moving forward and loving him along the way.

  • http://www.blogger.com/profile/18290571323764327616 Dixie Redmond

    Sending cyber high fives/hugs your way. I have a son who is now grown, and autistic. He has learned things I never imagined he would when he was your son’s age. He still is autistic, no doubt about it. But he’s a delight, too. Something a therapist said to me a long, long time ago was to find as many things we both enjoyed as I could to do with my son. Not just what he enjoyed, but what I enjoyed too. I can tell you we made a lot of cookies! ;-) You will be fine. Nor perfect, but stronger and you will amaze yourself in time.

  • Anonymous

    Your son is so lucky to have you. You are so lucky to have Ethan. You will each learn from the other. Bless you and your family.

  • http://www.blogger.com/profile/11622838274444234399 Melissa Stavarski

    Your children are lucky to have such an amazing, caring, devoted mother. Hugs and prayers for you all. I don’t even remember if we’ve ever met in real life.. but I’m just a few minutes away if you ever need anything. Even if it’s just a drinking buddy. ;0)

  • http://www.blogger.com/profile/03564699564793950199 Angel

    Hayley,
    We haven’t talked in a few years. I haven’t blogged in forever either and just decided I need to do it again. On the same day you posted this, my daughter was diagnosed with autism. It is a long story on why it took so long to get the diagnosis, but as I am faced with upcoming Kindergarten and all the battles of getting her what she needs I knew I needed an outlet and came back to my blog. I thought I would check on some of the blogs I used to read and saw this post.

    I loved reading that Ethan is still the same despite the doctors changing the label. That same thought is what gets me through each day.

    Happy Birthday to Ethan!

  • Anonymous

    I’m so sorry for the news (and I’m late in finding out). I’m sure you are knee deep in the research on treatments. Keep homeopathy in your mind. It does wonders!

  • Anonymous

    Hayley,

    You may have seen the 60 Minutes program that showed how a number of children with autism have been helped to communicate using the iPad. In some cases, medical specialists found that the children understood far more than people had realized. Here is a link to the program: http://www.cbsnews.com/video/watch/?id=7385686n

    What a wonderful, strong, and delightful person you are, and you have many extraordinary followers on your website. Unsung heroines.

    Blessings to all.

    Denise

  • http://www.blogger.com/profile/02965435963762020530 Mandy Lippy

    Hayley-
    My friend Jen V. gave you my email address. My son is also autistic and will be in Ethan’s class at APC. Please email me with any questions. Our life has been challenging, but with challenges comes gifts. Some higher being has a plan for all of us. I think only the truly special, strong, caring and dedicated could be blessed with such children. Under the challenges there are gifts that other children couldn’t come close to having. Hang in there and know that you are not alone and I will do anything I can to support you and Ethan’s transition to kindergarten. I was in your shoes last year. Please let me know whatever I can do to help.
    Mandy

  • http://www.blogger.com/profile/08145653659064088253 Kat @ sewchibi.com

    I had no idea you have an autistic child too! Azriella was diagnosed when she was 3 with autisim and it’d been a struggle, but things are getting better! I don’t know if Ethan goes to a special school or anything, but that has helped us immensely! My heart is with you, if you ever want to talk about it!

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