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.
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)
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:
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.
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.
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.
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.
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.