I made an appointment at Fraser, an Autism clinic a little over 4 months ago. It is the best place in the state of Minnesota for diagnosing Autism. When I made the appointment I thought maybe we would never really have to go. I thought maybe the quirks and rigidity would start to get better. Honestly, I made the appointment because I felt pressure from other people to do it.
The appointment was 4 hours long and scheduled for July 15th. Before the appointment I completed a book of paperwork as well as had a pre appointment via WebEx to discuss our concerns about Cooper. As per my usual, first I’ll tell you the facts. Then I’ll tell you how I feel.
We were late for the appointment. Jamie put the wrong address in our GPS and we went to the wrong location. After a quick meltdown that involved saying things like, “Do you want me to drive or look at the map?” and “I swear to God Jamie if we miss this appointment I will never forgive you!” we arrived at Fraser 20 minutes late. My anxiety was as at all time high. We waited 4 months for this appointment and I would have died if it wouldn’t have worked out. The day before as we drove to the city I was a nervous wreck. I actually chewed the inside of my lip to the point where it bled. I wasn’t nervous about anything specific I guess. It’s hard to describe. I knew this appointment was the next step. I guess I was most nervous about how I was going to react when they said he was autistic. I wondered if I would burst into tears or if I would feel like I was going to throw up. And then I wondered how difficult he was going to be during the evaluation. And lastly, then we have to tell people. It was a lot weighing me down so when we finally made it there 20 minutes late I felt like a bundle of nerves.
I rushed Coops out of the car with only one shoe on. As we were walking in I took a mental note of the other moms and kids walking in. There were at least 3 little boys with autism. They were all very loud, scared of the elevator and doing quirky things. And the moms were all chatting and laughing. I kinda, sorta relaxed a little bit.
As Jamie checked us in with the oldest woman in the world (seriously I questioned if she was alive) I took Cooper over to the toys. Within a minute two young, friendly, bubbly woman came over and greeted Cooper and I by name. I did a quick apology about being late and within seconds they put me at ease. We laughed about being lost and traffic and then one of the women grabbed Cooper’s hand and we headed back to an evaluation room.
There were lots of balls, puzzles, toys, and a sensory table. The first thing Cooper did was grab a ball and bring it to the lady to play. And I relaxed even more.
We chatted for a few minutes about the process. Typically, they take the child into an evaluation room alone with one of the psychologists and one parent while the other psychologist stays with the other parent and answers questions. For our sanity we opted to all stay together. I need Jamie and Cooper needs me. We are a team.
The actual evaluation went amazing. I have never seen Cooper more engaged, social and friendly. I was actually blown away and at one point thought, ‘Whose kid is this?” I sat on the floor with Cooper and played on a slide with balls and puzzles. The psychologist would bring different toys over to engage Cooper. Some things he tried and some things he didn’t. Throughout the whole process they made observations. Cooper’s delays are not across the board. In many areas he is right on track and in the others he is delayed. They called it a scatter.
At one point they asked what Cooper would do if we didn’t engage him. It was such a simple question. I asked for clarification. They told us that we were the most engaged parents they have ever seen at Fraser and followed up with, “we don’t tell this to everybody.” They were impressed by how much we anticipate Cooper’s needs and wants. I kind of teared up at this point. I expressed to them that I can’t keep it up forever. I am exhausted ALL THE TIME. I sat back and relaxed for a bit and Cooper played on the slide by himself.
The MOST important thing that they told us during the whole appointment is that they feel Cooper is very teachable. He hasn’t had any intensive therapy and that the sky is the limit for improvements. This felt so amazing. I don’t always see the teachable side of Cooper.
Here are a few of their observations:
- There are two things you can’t teach a child. To be social and to care what others think. They were blown away by Cooper’s social skills and his desire to get approval. When he was naughty he sought out eye contact as he was doing it.
- Cooper is the most vocal non-verbal child they have ever seen at Fraser. He has good range of sound and craves communication.
- He has excellent non-verbal skills.
- They understand how Cooper could be labeled Developmentally Delayed and not autistic.
- They recommended that Cooper go on the waiting list to start intensive therapy 5 days a week for half days at Fraser and go to preschool the other half of the day. They would help us with everything from getting him into preschool to his IEP to handling medical bills. (This would involve a move down to the cities–2.5 hours from where we live.)
I could tell the appointment was wrapping up and there still hadn’t been mention of a diagnosis. And this mama was going to get some answers. I couldn’t handle anymore of the not knowing.
So I came right out and asked…”So, um, if you were to um, label Cooper, um, how would you say it?”
And they replied with, “we would put him on the spectrum.”
And that was that. There it was. Someone finally said it to us. Let me rephrase that, someone who knows what the hell they are doing finally said it to us. I asked specifically why is he on the spectrum. They said rigidity and not talking. Neither of these things shocked me.
The appointment ended with Cooper bringing me my purse, pointing to the door and signing all done. Everyone had a good laugh. It was really cute.
We got in the truck and I sat there for a moment without saying anything. Was I going to cry? What was I feeling? And honestly, I had no overwhelming feelings.
So how do I feel? Well, it took me over a week to write this post. Mainly because once I write it I can’t take it back. I choose to share Cooper’s life and my feelings with the world and it’s scary. It makes us extremely vulnerable.
To put it simply, for the first time in over a year I have hope. We are going to move to the cities, be closer to family and Cooper is going to start intensive therapy at Fraser. This is exactly how it should be and I couldn’t be any more excited about it. He is teachable and the sky is the limit.
So what would I tell other parent’s that are scared to get a diagnosis…because that was me for over 2 years. I would say that nothing changed. Nothing at all. I thought I would be devastated and that I would cry and mourn. I had none of that. Don’t get me wrong, I can still feel the punch in the gut when a horrible woman cornered me and told me in a completely unprofessional way that she thought Cooper was on the spectrum. Let’s just say I better not meet that woman in a dark alley. Point being, I know devastation. But I didn’t feel it after this. I was almost numb to it.
I accepted Cooper a long time ago. I know he is going to fight me at every meal and if he sees a rock he is going to throw it. I know he would do anything to eat Cheetos and watch Cars. I also know that if I look at him with a stern face he is going to cry and that his favorite game in the world is to be chased.
After the appointment we played outside for a few hours. Cooper climbed the wooden play set by himself and I celebrated like a damn fool. We did baths and read stories and snuggled and went to bed. He was still the same old Cooper. My sweet little peanut.
It’s almost like I did my grieving and now it’s time to move forward. We have the diagnosis and he is still the same dang kid he was before. Nothing changed.
Since the appointment I have told two people that Cooper is on the spectrum. 5 simple words. It’s funny how much I dreaded saying it. I felt sick as I said it out loud but afterwards nothing happened. I didn’t cry. They are just words.
The way I see it, it’s not the diagnosis that’s hard, it’s the behaviors that make it up.