2 years ago

The Autism post I’ve tried to write for 2 years. [Part I]

I have started and stopped this post multiple, multiple times over the course of the year. I keep notes and dates for each new thing Emmett does. I have thoughts jotted down here and there. And I have tons and tons of pictures.

property of Carolyn Svellinger
Emmett, 1 year old
At this point, there is so so so much I want to share, but I’ve waited.
I think I’ve waited mostly because autism has taught me a valuable lesson: He surprises us all the time.
Sometimes in very subtle ways, and many times in loud ear-piercing ways.
Emmett’s brand of Autism, that is, because no two children with autism are exactly alike.

What I share here, I passionately believe no one should go and project onto family or friends who’s son or daughter has autism and say “This one blogger I know does this and it works!”

Because, while offering advice does have the potential (and I keep telling myself the intent) to help a parent with a child who is on the ASD spectrum, sometimes it actually hurts.
Sometimes, a mother’s heart sighs heavy when a well-meaning loved one says she saw something or other on TV and the change was a miracle …yet it has been tried with her child, and so far, no, there is no miracle. But I’ve learned: anything worth working for takes time, a long time. So while I’m getting better with patience, a mom new to Autism might not be.

I have also hesitated because of the scrutiny I see everywhere.

I’ve learned that it’s a touchy subject, writing about your child who has a disability or special needs. That for a mother to reveal that she is looking for the potential cause of her child’s defect (drag me into the street and flog me for using that word.), which is not always genetic, there are people on social media sharing little stabby articles left and right in opposition of trying to find the source of Autism and in outrage over “trying to fix the autistic child.”
There are some people who shout “HE WAS BORN THAT WAY AND STOP LOOKING TO CHANGE IT. Just love him- he’s perfect.”
as if :

a) they know for certain that he actually is made that way. (Hint: they don’t)
and
b) looking for a way to understand and better my son’s life is an unhealthy thing, that I must not love him, that I must not think he’s perfect enough.

I’ve learned that this search for the cause is part of a grieving process that I, for one, needed to go through so that I could eventually move forward. My personality type (INTJ) has me forever needing to know the source (of ANYTHING) so that I can know how to act, so that I can know the best ways to achieve the best results, I literally can’t help it.

Then! Oh, then there is another crowd that says, if you just think positively, if you just believe enough in the Lord, He will heal your son.

I found myself hesitant to hash out my own feelings here because whatever they have been, the internet has a problem with them. Each one.

So here’s my disclaimer, just to be clear, so I know we are at least within the margins of being on the same page:

-1-
No, Emmett is not perfect.

But none of my children are perfect.
Craig and I are not perfect.
No one is perfect.
But to Craig and I, Emmett is as perfectly made by God, and perfectly loved by us as much as any one of his three brothers.
We love him. I love him. When he was born, the moment my lips met Emmett’s forehead, I was a goner.
Emmett is not perfect, but it’s NOT autism which causes the imperfection. 

-2-
No amount of superstition is going to force the Will of God.

Yes, I have faith. I have hope. Yes, I BELIEVE. We have faith in God’s will for Emmett. I believe in God’s will.  Craig and I trust in God’s will. I cannot dare to presume what God has designed for our boy. So I don’t.

Have we asked God for Emmett’s healing?
Yes.
Yes, I have whispered through tears in the dark of night, after everyone is asleep.  I have begged God for the day when Emmett looks at me point-blank and purposefully says “Hi, mom. I love you.” and “Mom, I’m hungry.” and “Mom! Mooom! I have to go potty!” and “Mom, come here! I want to show you this!” and “Mom! Look! A helicopter!” and “Mom, hold me, I’m scared.” and “Mom! Lexington won’t share!” … But instead of insisting that if I only believe enough, God will reward us simply because I demanded it, I ask in the same way Jesus asked. “If it is your will, Lord…”
And so far, the answers I have received are different than a simple yes.
In learning about autism, in learning about Emmett, I am healing.

I! Am! Healing!

I didn’t know I was even broken until Emmett came along and taught me how having special needs is not something to feel repulsed by. I’d never truly considered the human person in a state of disability until we had Emmett. I’d never been forced to look anyone in the eye who might’ve made me feel uncomfortable with their defects.

Now I was begging him to look me in the eye. And he barely would.

property of Carolyn Svellinger
Emmett on his 2nd birthday.

I have faith that Emmett has autism for a reason which I do not understand.
I have faith that God has a plan for Emmett.
Do I ask for God to heal him? Yes. But I don’t get hung up on it.
Do I believe God can heal him? Yes.
Do I believe God will heal him? If it’s God’s will, I believe He will. But I’m not wasting my time stomping around in anger, shaking my fist at God demanding I WANT IT NOW!
No, I’m not going to sit and believe long and hard and poof, God’s just gotta do what I want. Because if that’s how to get things done, then I can believe my way into a trip to Europe accompanied by a free nanny who will watch the boys so I can sit in a bistro and knit, and one of those super new 12 passenger vans with a window that rolls down so I don’t have to open my door at the Starbucks drivethru.

This is God’s will, not mine, and I am good with that.
I am working every day to be better with it. I’m learning that God is working on people through Emmett’s disabilities: I am proof.
I have realized that if God can use any of my sons to soften hearts and bring them to Jesus, then all the glory to God. “I am the handmaid of the Lord”
If Jesus could deal with God’s will (the passion & crucifixion), then I daresay, I can deal with a child who has a hard time communicating and being around lots of people.

…and that was the longest epilogue ever. actually, probably not.

Here begins the [real] rest of the story:

As soon as the word AUTISM became a talking point with Emmett’s pediatrician, we got him started with the state programs. According to every person we talked with, Emmett would unquestionably go straight into preschool and kindergarten.
I was like woah woah woah.
We are homeschooling.
Right?  I can still homeschool Emmett, right?

And then I got the slow recoil from the therapists and the teachers. The blank stares. The slow talking-tos. The we-are-dealing-with-a-weirdos.
No they said. They said Emmett needed socialization.
And we were like… His brothers aren’t enough for a 2 year old to socialize with? His extended family? His cousins? Not good enough?

We watched them work with Emmett. It seemed like they kept their methods secret, as if only they could employ them. And we had to keep coming back to therapy or else who else was going to help Emmett? We were made to feel helpless.
This is where Craig and I saw a huge disparity.
Emmett was barely 3 years old and he needed help in the home.

But the kind of help he needed wasn’t necessarily with him.
It was Craig and I who needed help.
WE needed help understanding Emmett. We needed to know how to talk to him in a way that he could process. We needed to know how to handle meltdowns. We needed to know how to transition him from one activity to the next.  We needed to know how to work with him to wear long sleeves and a coat during days when the temperature was 0 degrees. We needed to know how to work with him when he would SCREAM every time we stopped at a stop sign while driving, and every time we turned down a different road than Emmett expected us to turn.

It was Craig and I who needed therapy for Emmett. But the therapists and teachers made it seem like without them, Emmett would not thrive.

The truth is, without a child feeling like he/she can be part of the family at home, a child cannot thrive. Just my opinion. I might be wrong.

We felt like pushing Emmett into a foreign world of classrooms, and different children, and teachers, and sounds, and routines so different from how he was still struggling to operate with at home, it might overwhelm him more. To send him off, behind closed doors, to work with therapists who do not know how we function as a family wasn’t going to help me be a better parent for Emmett when he’s thrashing on the floor and I don’t know that all he wants is a peanut butter and jelly sandwich.  They were honestly expecting I would drop Emmett off and just leave. One of the therapists we saw actually called it “glorified babysitting.”

Expensive glorified babysitting.

I asked the preschool faculty we were considering if they’d allow me to sit in during the school day so that I could learn how to work with Emmett. “Uh… that’s not usually allowed. You could probably stand outside and watch from the window?”

There was only one therapist who helped us. Her name is Lissa. She is an early intervention specialist who came to our house to visit Emmett once a week for a short span of time before he turned three. She explained why she was doing what she was doing. She explained what might help Emmett. She explained ways to help Emmett communicate his needs to us.
Lissa is the only one out of the many experts we spoke with who made us feel like we had any power to help Emmett be integrated into family life.

property of Carolyn Svellinger
Lissa working with Emmett, months before he turned 3.

The way Emmett is, he’s introverted and loves his cozy, familiar places; our home, his toys, each of his grandparents’ houses, and his Aunt Kate’s house.
At three years old, Emmett needed help learning to function better with his family around him while in those places of safety. When we left those places, Emmett was frustrated, sad, overwhelmed, and extremely difficult to handle with his brothers in tow.
I wanted to see Emmett learn to depend on Craig and I, and his brothers for support while we were in an environment that made him feel frustrated and unsafe. I wanted to get Emmett to understand that we could help him, that his safe place resides truly with his family, wherever we are.

Sending him off to a special needs preschool, 1 main teacher, 1 floating aid who shared a neighbor class, and 1 therapist with 15 other three year olds with varying levels of special needs, to be forced into a new environment with new children, a totally different set of adult authority figures– We knew beyond a shadow of a doubt was wrong on all levels for Emmett.
But this is what the professionals were telling us needed to happen for Emmett. Socialization.
AT THREE YEARS OLD.

But we are parents looking to do what’s best for our children, even if it makes things uncomfortable for us. So we proceeded with getting Emmett set up into a state funded special needs program. It still felt wrong, so wrong in my gut. We knew our little boy, and I wasn’t seeing how sending him away was going to help.

The doubts I had were magnified when we were visited by a few of the teachers Emmett would be seeing in the event we had chosen to send him:
The occupational therapist slash teacher came to our house, one fall day to give Emmett his assessment.
She was sweet and she happily addressed me.

Her demeanor coin flipped as she looked at Emmett and assessed that I must certainly be in the process of weaning him from his pacifier, “right? I mean that’s why he’s not talking, of course.” she affirmed.
Emmett, who otherwise would mouth a clod of dirt had not a pacifier been there, was nowhere near ready to have his one comfort object snatched away from him –again, he was not yet 3 years old.

I looked at her and said, no. I don’t see how Emmett having a pacifier in any way impends his learning, and even his speaking. Because the fact of the matter is that Emmett would not even try to speak. That, teacher lady, is why you’re here. (I didn’t say exactly that but, you know.)

I also didn’t inform her that we’d tried. We’d tried to coax “mom” or “dad” out of Emmett by withholding his pacifier, or even a treat.  We’d tried to teach him how to sign “more” having seen it work so brilliantly when Lexington was a little baby. We tried and tried and tried, and it always ended with Emmett crying. Emmett crying, not having uttered a word. And me crying because my 2 year old did not know my name, “Mommy.” But that’s why I figured she knew she was there: because we needed help, because Emmett wasn’t talking.

She called out his name. Emmett ignored her. She called louder. She shouted at him. She giggled at me, and obviously frustrated, attempted to jokingly suggest that Emmett must be a stubborn little thing.
This therapist began clapping. She clapped at Emmett like he was a dog. “EMMETT!”
She slapped her hands on the table in aggravated rhythm, “Emmett! Come HERE!”

I asked Lexington to take Emmett’s hand and guide him to the therapist. Once Emmett was seated, she began her assessment of asking him basic demands, which of course he did not do because, again, THAT’S WHY SHE WAS THERE.
The lady looked at me from her clip board and winked, “I’ll give him a good score, don’t worry.”

I stood there, watching the whole event in shock. A good score? Like, there are “good” and “bad” scores with children who have special needs?  No. This cannot be happening. If any of my children, special needs or not, are having a hard time doing something integral to their life skills, I will not allow winks and fake “good scores.”
NO. This child needs help doing what he needs to do, WRITE THE EVERLOVING TRUTH DOWN THERE ON YOUR CLIPBOARD, MA’AM.
This impatient woman who is treating my son like a dog, like he is not a human person –in my presence– will not be trusted to handle him out of my presence, in the walls of a classroom. along with 15 other children.

no.
NO.
[To be continued]

Click here to read Part II 

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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

    Reply
  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.

    Reply
  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.

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  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!

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  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.

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  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 ;)

    Reply
  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.

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  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!

    Reply
  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!

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  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.

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  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!!

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  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.

    Reply
  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.

    Reply
  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.

    Reply
  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.

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  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)

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  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 !!!!!!

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  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!

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  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.

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  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.

    Reply
  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.

    Reply
  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.

    Reply

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