28 Comments

  1. As a mom of a child with special needs, your comment about never truly seeing humans with special needs until you had your son cut me to the core. That is how I feel 100%. Thank you for your honestly

  2. Don’t even get me started on the pacifier thing!

    I obviously need to pray for more healing because I’m still mad at all the people who dismissed my concerns as a mother and insinuated that I was a bad parent for not “accepting” my child who we now know has autism.

    Awaiting more.

  3. I’m a speech pathologist, and I feel sick to my stomach reading this. Mostly because I know this approach is wrong, but also, because I used to be that therapist. Then 15 years ago, I had a baby with special needs who needed services immediately after spending a month in the hospital and for the next ten years. Now, I am a million times better at working with families. Not because I’ve garnered more knowledge about the latest research and techniques but because I know what it feels like to be the recipient of that attitude and judgement. I know I was dead wrong in my approach.

    I hope you now are working with people who value you as the team leader and whose main objective is to help you and your son.

  4. Loved this story! So raw and honest!
    I used to nanny for a boy on the autism spectrum (obviously much different than parenting) but I always find it so interesting to hear other family’s stories.

    Can’t wait for Part II!

  5. I loved this post and couldn’t agree with your epilogue more. I really dislike the mainstream ways of approaching autism. It makes me aghast that I should in any way be ashamed of trying to help my son communicate and understand his world better- all in the name of diversity! We chose a different path for my little guy with autism by sending him to school but his struggles sound a little different than Emmett’s. He doesn’t know how to entertain himself at home and was wreaking havoc. He does well in the routine of school and I have the time to focus on my other kids who I do homeschool. My hope is to one day be able to homeschool him as well.

  6. I love this post… cannot wait for the continuation…. You are an awesome mom. maybe I can share these with my parents who are struggling with the diagnosis? is that ok?
    also ~ we have the same dino romper ;)

  7. I’m a longtime reader of your blog and I think I’ve commented before on a few posts. This is absolutely what I needed to read. My daughter is a twin and while her brother is typically developing, she is low functioning and nonverbal. She is five years old and after one horrible and traumatizing year of figuring out school and ABA therapy, my husband and I have chosen to keep her home and I am doing the majority of her behavioral therapy. I had a similar experience to what you described with the therapist who was sent to observe your son. Thank you so much for sharing your story.

  8. I’ve been a long-time reader, but my introverted side has kept me from ever commenting!–until this post got me so angry on your behalf that I couldn’t stay quiet. Similar to what Francine said, the mother and speech therapist in me are so, so frustrated for you (well, “livid” would be a more honest adjective). While reading, I just felt repeatedly compelled to apologize for the behavior of the “professionals” in my field/related fields who “helped” you. And as Shannon said, I had thought that family-centered, IN-the-HOME, parent-as-therapist-style intervention (especially for a 2-year-old, sheesh!) was the most common practice, since it is BEST practice–but unfortunately, apparently, there are still therapists who are too stubborn and/or antiquated to be keeping up with best practice. :( I’m just so, so sorry that you and your husband weren’t respected as Emmett’s best teachers and placed at the head of his therapy team. However, it seems that your beautifully fierce maternal instincts haven’t let anyone get away with that, and for that I admire you very much!

    I’m sincerely looking forward to part II. God bless your beautiful family!

  9. There is this song called The Hurt and The Healer. It’s my favorite reminder that all our hope is in the Lord and He is for us in our trials.

    Faith in God is never forcing Gods will! But just like a persistent child… The more they ask for something the more we believe they truly desire it. Healing is guaranteed for those who trust in him, either here or there. Never give up your hope!

  10. Oh my gosh. I can’t even begin to imagine how you felt in that moment when the teacher lady was at your home. I know so very little about autism and that’s why I knew I needed to read your post when I saw you tweet about it.

    Isn’t that motherly instinct a crazy thing? Like you knew from the beginning just what Emmett needed and thank GOD you haven’t ceased listening to that gut feeling.

    Thank you for sharing this.

  11. Carolyn, I’ve read your blog for a while and identify with you for a few reasons: a. Mom b. second son with autism c. baby named Jude (ours is 4 months). My experience has been very different than yours. We loved our EI special instructor– he has such a special relationship with our son. And honestly, I thought I would hate the preschool setting, but it has been wonderful for my son. It is only 10 hours a week, and he LOVES it. That said, with kids with autism you have to go by how they’re acting, and if he would have hated it I would have no problems taking him home. We just have to do our best by these kids… the same as all our kids. I really appreciate this post!!

  12. I could have written your post when my son was three. So, so many similarities. One memorable moment that your post reminded me of was the speech therapist who refused to work with my son because she couldn’t get him to talk to her. Umm, that’s why he heeded a speech therapist, because he couldn’t talk?

    That was 15 years ago now. We did end up homeschooling our son. While he is still very delayed with language skills, I do not doubt our decision to bring him home. His behaviour improved a lot. And we learned how to live together as a family. He is now attending school part time to participate in a work ed program and it is actually going well. Feeling cautiously optimistic about his future now.

    Looking forward to hearing more of your story.

  13. Oh gosh, reading this makes me so angry. Yes, it is glorified babysitting. My husband and I were just talking the other day about how so much struggle goes into raising our kids not because we’re trying to give them what they need but because we’re trying to get them to conform to others expectations for them. I know they’re well intentioned but often they’re very short sighted. The logic is usually, “But we need to help teach him to sit in a chair like other kids all day!” “But he’s going to be home schooled….” “But he still needs to learn!” “Why?” “Because that’s what kids have to do!” “But he won’t because we’re homeschooling…” “Well if you want him to be developmentally stunted that’s up to you!”
    My mom is a retired teacher and its so hard for her to get out of that mindset. My son is a kindergartener and is adding and multiplying large numbers in his head, but he doesn’t like writing so we usually just do a verbal math lesson. My mom comes over and just harps and harps on him because he won’t write the answer down and show his work. And it depresses me to think how many incredibly smart kids grow up thinking they’re not because of this narrow minded approach to education and child development. I really feel like it hurts all kids, not just the ones who clearly don’t conform. And then it’s even worse when you do need help but not the kind they’re offering.
    Ugh.

    1. Also, if you haven’t you should read How Children Learn and How Children Fail by John Holt. I highly recommend.

  14. Thank you for writing. I’m so frustrated on your behalf with these “professionals” and I look forward to hearing more of your story. I love how you pray for God’s will to be done.. I need to incorporate that prayer into my life more often.

  15. Thank you so much for bravely sharing your story! My own story is similar, not the same but similar and I know how hard it must have been for you, I, too await part 2.

  16. Just, wow. I am realizing how very much I have taken our experience for granted. Every avenue of help we have sought out (both govt and private) have been completely home-centered and parent-inclusive. It is clearly best practice but I honestly just assumed that’s what everyone was doing nowadays. I’m so sad and frustrated to hear that that has not been everyone’s experience. Awful. (full disclosure, my son does not have autism but there was speculation for awhile and other needs were treated)

  17. You and Craig are the most loving parents I know….. You both are doing a great job…. and with your faith everything will be ok. He knows he is loved . Government funded help is just ….pharmaceutical ….JOKE !!!!!!

  18. Thank you so much for sharing this. I do not have a child with autism, but as a mom reading your post I feel incredibly frustrated on your behalf. And I can only imagine the whirlwind of other emotions you must have experienced thus far. My 2-year-old never referred to me by any name until he was about 16 months old, despite saying Daddy and probably 100 other words for months…and I tried not to think about it but when he finally called me Mama I REJOICED inside. Your situation is undoubtedly more difficult I feel for you. God bless!

  19. Thank you! Thank you for writing this!! I have done special needs care every summer for the past two years and I have so so many mixed feelings about it and how it is done. But you really capture it so well and get at the core that it is to have the child function within the family! Cannot wait for part two.

  20. Thank you for writing this. I have a child who is profoundly dyslexic and another with auditory processing disorder. I have to say that I still am struggling with the idea of two children with special learning needs. We homeschool and I don’t like to have them labelled. I fought to keep my son out of the system because the doctor wanted him evaluated at a young age. He was continually on the autism watch list. I knew that wasn’t the problem. I had taught autistic children when I was still a public school teacher. I knew there was a problem, but that wasn’t it and I didn’t want him labelled an shoved into special education. He needed loving support, as you say.

    I’m sorry I am rambling. There are times that I doubt that I am enough, because I am not a paid professional. There are many times that family and friends tell me, not in so many words but they might as well, that if I sent my children to school they wouldn’t have problems. Actually one relative blames my son’s problems solely on not attending five day a week preschool. I begin to feel inadequate and wonder if they are right. Thank you to letting me know that homeschooling a special needs child is the right thing to do, and that all children deserve the time they need with their mother no matter what their imperfections and issues. I know that no child is perfect and I perfectly love all of mine, it is easy to feel though that I did something wrong and that if I had just done this or that better then they would be the perfct children everyone else has. The truth is that no one and no where is perfect except for God and Heaven, we are all sinners, fallen, and lost.

    God bless you and your family.

  21. I am speechless. Tears-eyed. You are walking me through the story of one mom’s journey to love a child, autism or no. I’ll just sit quietly and wait for part 2.

  22. Both the mother and social work major in me are so frustrated on your behalf right now. I’m so sorry that you weren’t able to get the help you needed.

Comments are closed.