The Sentence That Changed My Life

14088725_1417495344927588_794622903_nI am often asked what was the pivotal thing that changed my way of thinking about autism? Or about my attitude towards my son’s autism?

How did I take that first step towards acceptance? I had a mom tell me it took her 5 years to get to a comfortable place with her child’s disability.

Well, I would agree that mine took 5 years. Maybe closer to 6.  Even today I still have struggles. Like ordering a handicap sticker. Or visiting my sons school and saying, ‘my son is in special education.’ Those are toughies. Mostly seeing other kids. That’s the worst.

Acceptance is a journey much life grief. And it’s not linear.

Mine was a series of falls and trips into acceptance. It was hella messy and involved multiple moves, lots of denial, loss of friends, even more tears and a divorce.

But yes, I have identified a pivotal part of the journey.

We were living in Duluth. I was trying every single thing I could to get my ‘speech delayed’ child to start speaking. He was 2 and obviously a late bloomer. (Insert eye roll and snicker here)

Summer had just begun. I knew in my heart that something was seriously wrong with my son’s development but at age two it was still somewhat hidden.

MANY 2 year olds are speech delayed. That is a fact. I also had a boy. Many 2 year old boys are speech delayed. He pointed. He waved. He made eye contact. These are facts. And I held onto them tightly.

I had just changed my schedule at work so I could be home with Cooper every Wednesday and Friday.  The truth is the majority of his medical care and therapy care fell under my role as a mother. This is not a bash on Cooper’s dad. I assumed the role. I wanted to do it all. I wanted to fix him. And no one could do it as good as me.

Because of this I struggled to maintain a full time job. This is a real problem for parents of kids with needs. Or any caregiver for that fact.

So, it was my first summer home a few days a week with my kiddo. I loaded us up with therapies and play groups. I researched every park and toddler type activity in a 20 mile radius.  I found every single Pinterest activity under the sun for toddlers. You know the ones. Shaving Cream Sensory activity. Sand bins. Paint with potatoes.

I did it all. And holy shit did we fail.He either refused to participate in the activities or he destroyed them. It took me another year to get the sand out of my home and even longer to get all of the shaving cream off my ceiling.

Play groups were a bust. Cooper wouldn’t participate. He wouldn’t play.  He pushed other kids. He hid. We tried going to parks. Nope. He couldn’t climb. Instead he ran and ate sand. We tried ECFE. This was the worst one. He refused to separate from me. Every other parent sat and drank coffee while I chased Cooper or held him screaming at the door. ECFE is great when you have typical children. We did not fit in and I still have nightmares about it.

I tried simple things like feeding the ducks. Or throwing rocks into a lake. All fails. No activities worked. He wouldn’t do any of them.  We got to the point where we couldn’t leave the house.

We tried speech at the hospital. Fail. We tried Occupational Therapy at a place focused on kids. Bigger fail.

We started going to therapy at a clinic specializing in language disorders. EPIC FAIL.
This sounds dramatic. It’s not. These are facts. I called Cooper’s dad every Wednesday and Friday crying. He worked at a bank. I called hysterically. It wasn’t pretty.

He told me to quit is all. I refused. Instead I did more.

I started to think I had the only kid that wouldn’t respond to therapy.

I bet you are wondering what the professionals were telling me. Like the Speech Therapist and Occupational Therapist. Nothing. I was smiling. I was faking my way through. We would laugh. They would tell it would be better next week. I often heard, ‘everyone talks eventually.’ That was a common one.

About this time Cooper got another infection. I brought him to the Pediatricians office and I had a meltdown. I sobbed and asked what was wrong with my son. But I think I ended every sentence with…but it’s SO OBVIOUSLY not autism.

She recommended we bring in the school district. We started with the Help Me Grow program. It was terrible. To this day I have the biggest distaste for the Help Me Grow program. Then we moved to the next level which was a family service plan. What this means is that a person comes to your home once a week and attempts to do therapy with your child. This did not work for us.

Cooper threw things at them. He ran. He refused to play. Or participate. I dreaded the visits. I dreaded the days off with Cooper.

Every week it was something new.

We saw doctors. Always more doctors.

No one mentioned autism.

I was making myself absolutely crazy trying new things. Then I started Gluten Free. Dairy Free. I added in Fish Oil. Then probiotics. I took foods away. I added foods in. I pureed every single vegetable you could think of made foods from scratch.

I read every single blog. But only blogs where they kids improved. They had to have a happy ending.

We started going for long walks around our 5 acre yard. He liked to wander. So I followed. That became our day. Wandering the yard and watching Thomas the Train.

Then one Thursday afternoon I was picking Cooper up from daycare.

I remember being especially exhausted. I had a 4 month old as well. A job. A family. A kid with a speech delay.

Cooper had been going to this daycare for a little over a year. It started fine but as Cooper’s delays and challenges became more apparent I could tell there was something brewing under the surface of our daycare/parent relationship.

Every pickup would give me a feeling of dread. She would tell me that he didn’t play with the other children. That he wandered around. He was anti-social. He threw. He refused to eat.

Each day at pick up I felt the weight getting heavier. I was telling Cooper’s dad all these things and he would say….’she doesn’t say them to me.’ WTF went through my head.

So, on this Thursday I remember getting out of the car. She walked up to me and told me that it was time for a serious conversation.

And then this woman…a daycare provider…not a doctor or a teacher…a woman I thought was my friend….said the harshest words that have ever been said to me. Today I am 33. This happened 4 years ago. And I can still remember it so vividly.I still feel that pit in my stomach.

She told me that I needed to accept that Cooper was different. She said that I needed to prepare myself for the future. I was living in denial. She said he was never going to speak. He would never ride a bike. And he most likely would never make a friend. She’d seen it before. She knew kids. Her dad was a speech therapist. Cooper was different and not like the other children.

She started comparing him to other kids at the daycare. So and so is the same age and he is talking and playing. Look at so and so and how she is playing hide and seek. Now look at Cooper. He is sitting in the driveway eating sand.

I was stunned. I felt sabotaged.

Imagine someone saying those words to you. Imagine what that would feel like.

Then she dropped the bomb.

She told me I was neglecting his care. I wasn’t doing enough. She said it was apparent that I was in denial and I was causing him harm by not getting more help. She also said she couldn’t help him anymore. He could continue to go there for daycare but she wasn’t going to teach him anymore. She also wasn’t going to ‘fake’ his work or art projects and that I would no longer be receiving mother’s day art projects or Christmas projects. There was no point. I didn’t need to see her coloring.

I stared at her. I remember thinking about strangling her. I thought…people have killed for less.

But instead I just stared. I knew if I spoke I was going to cry. I was paralyzed. I had a huge lump in my throat.

I was so confused.

At every pickup I would tell her about all the therapies we were doing. I was running myself ragged. I was neglecting my other baby. I was neglecting myself and my marriage.

The only thing that mattered was Cooper and fixing him. I was consumed by his care.

And yet, this woman told me I was doing nothing. Even worse, she thought I was actually neglectful.

I nodded. I backed away without speaking and put Cooper in the car and left.

I went home. I crawled into bed. And I cried for the whole weekend. Let’s call this my low point.

I had failed my son and my family. I struggled to get out of bed for a few days.

For me that was a turning point.

What she said to a first time mother of a two year was completely and utterly wrong. She ended up calling me and apologizing but the damage was done. To this day I think of those words…. He will never speak, never ride a bike and never make a friend.

I struggled to articulate my feelings to my mom and my husband. I mostly just cried for a long time. I was crushed. I had a broken kid. Or at least I thought not speaking, not riding a bike and not making friends meant I had a broken kid.

And then a few days later I woke up. Or, I rose up. I snapped out of it.  And I made the appointment for an autism evaluation at Fraser.

But the funny twist in all of this is, yes, she was right. But she was also so wrong.

Cooper is 6 and he doesn’t speak. He doesn’t ride a bike and he has never played with a friend. And it’s not the worst thing ever.

That was the pivotal moment for me.  At the time she gave me what I thought was the worst case scenario. I took it like a death sentence. Her words almost killed me.

And now, at age 6 my answer to her would be, ‘so what lady.’ Cooper is fine. He is happy. He is healthy. He doesn’t need to do those things to be my son.

She painted a picture of doom and gloom that ended up being true. And, it’s not all that bad. So, my kid doesn’t ride a bike. So he doesn’t have friends. There are hella worse things in life.

The worst sentence ever uttered to me gave me the anger and strength to get where I am today. Funny how that all works out.

 

 

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10 thoughts on “The Sentence That Changed My Life

  1. Wow Kate what that lady said to you- even if it was what changed your life- that was brutal. I’ve been outreaching for 17 years and have 2 special needs children and there are ways to get her point across without being so judgmental -and to make statements that she doesn’t have a crystal ball for. If a child isn’t making progress within 3 months (and in particular a preschool child) it’s time to reevaluate therapy, therapist, and/or diagnosis. And typically in that order. The most important thing when kids are little is to secure an accurate and complete diagnosis -that’s the best way to secure appropriate therapies which provides the best prognosis.

  2. What an awful thing to be told! It’s so wonderful though how it ended up being the inspiration you needed to be where you are today. “Professionals” told me a similar thing about my son 14 years ago, at the age of 3. He’ll never speak or be like any of the other kids. He’ll never know the alphabet, he’ll never read, he’ll never get a job. That I needed to start planning where he’ll live because one day he’ll have to live in a group home or mental hospital. Well….he does talk, albeit not great. He does read, although he struggles. He doesn’t know his alphabet, but he IS working on getting a part time transitional job after graduation. He’s a completely different person than he was 14 years ago. *No one* knows our children’s future. Crystal balls have no meaning. With a caring mother like you, Cooper will do great!

  3. This is both heart wrenching and amazing at the same time…I can relate on many levels to this- but I am definitely still in the have not completed my acceptance of my daughters disorder – unsure if I ever will- you are not alone with your feelings and you are an amazing writer!!! Love to you and your family!! Cooper is amazing as are you!

  4. I very much enjoyed reading your story. I have a few choice words for that daycare worker, but I’ll keep it classy here. Sounds like you handled that situation very well. (She’s still breathing right?)
    I had a friend, or should I say, I used to have a friend who said something to me that I replay in my mind at least once a week. I was telling her how stressed my wife and I were. This was probably a few month after our diagnosis of our first born, so we were still struggling with acceptance. She said to me, yeah, “but don’t you think we all have problems?” As if her problems at her job in HR was equal to what I was going through with my son. People can be so clueless and rude is the whole point of the story. Every time I have break out the rug doctor to clean up yet another “code brown” in my 10 year olds bedroom, I say that line in my head. Right, all parents have to clean this up multiple times a week. I’m glad you found your strength momma. Keep up the good work.

    • I love this comment. I totally get it. I actually wiped up poop that dripped down Cooper’s leg today and I thought something very similar to what you wrote. Life is so damn hard. And the difference in our situation is there is no promise that it will ever get better. I could be changing diapers when Cooper is 10, 15 and 20. That scares the ever living crap out of me. I’m glad you found me too! Our lives are parallel!

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