The Diagnosis Post

a14553f2fbf5eb71086bb7e84ebe9ee7I 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.

The Facts:

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.resized

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.

The Feelings:

10492417_10201729504313799_1699558798636850434_nSo 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.

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20 thoughts on “The Diagnosis Post

  1. You now have something concrete to wrap your hands around and work on. That’s what a diagnosis gives you. It gives you a fixed point to start building from. That’s excellent news! I’m also thrilled to hear that Cooper blew them away in many areas – awesome! You are doing great – you all are 🙂

  2. Welcome to the autism club! I know exactly how you feel. And let me tell you, intensive therapy is WONDERFUL and it will be worth the move. I am so happy that you finally have answers! And since you only have two million things on your plate right now, I’ll suggest one more. Look into feeding therapy for kids on the spectrum. You can do it yourself, and it’s actually kind of of fun. Good luck with everything, Mama!

  3. I am so excited that you guys are going to move so Cooper can get what he needs. Not every parent would do even way less than that. You are SUCH an awesome mom, Kate. I could really feel your hope in this post. I LOVE that he was COOPER for them at the evaluation! Sounds like you have a lot to look forward to. I am so glad you got some validation from the staff there that the hard work you do with him DOES make a difference!! xoxo

  4. I have so many mixed emotions after reading this Kate. You now have some answers and things to work towards and that is huge. Obviously I don’t want you to move; however, this is such an amazing opportunity for Cooper. You and Jamie continue to amaze me as parents with your love, support and drive to find answers and the best opportunities for Cooper. Big hugs to you all and many prayers for guidance through this journey. Xoxo

  5. The only way is up. And this kid is going to soar! The more I follow your blog and fall in love with Cooper the more excited about his future I get. I admire you, salute you and 100% support you from Scotland! Go mamma…you are amazing!

  6. You’ve realized, way more quickly than I did, that the label, those words don’t change our children. They are the day after diagnosis the same children they were the day before diagnosis. Good luck with the move and the changes. Sending you hugs. Courage.

  7. I was up late reading the majority of your posts – you are such an incredible mama! And I love how real and honest you are with your writing. I wanted you to know that I just published my post about our journey and I included a link to get to your blog. Keep spreading the word – I look forward to future posts! xo

    • You just made my day:-) Thank you so much. Before I started blogging I felt so alone in all of this. Blogging changed my life. I virtually met parents just like us. It’s been wonderful. I will check out your blog as well. Thanks lady!

  8. Kate, your post made me tear up. I have heard that a lot about myself with Landon, how I do a lot of the engaging and we kind of have each other figured out. It’s true; that child of mine is the other half to my soul and it kills me to see any struggle, but you move forward, love your kids, and do the best you can. You are doing just that. God bless you guys XO

  9. You are going to see amazing changes in Cooper once you start therapy. I’ve lived this for 30 years, and we didn’t have all this wonderful therapy back in the 80’s. I’m not complaining by any means. We had lots of good people who made some wonderful changes in Chuck over the years. Hang in there Kate! Life will get better for all of you!

  10. Kate, you are such a courageous and strong Mommy! You are doing a great job and I am so in awe about your decision to move to help Cooper get what he needs. You are an inspiration to all of us still trying to solve our child puzzles!

  11. It sounds like it was an amazing experience. You have answers and a team who on all appearances will work with Cooper and you! Sounds like it was a bittersweet day to experience – good in that you finally have a fantastic plan in place and sad because it is validation that Cooper is on the spectrum. You’re such an amazing mama!

  12. I know the feeling of avoiding the evaluation and feeling as if a label is going to limit your child and that he wont be your child with a future anymore he will be whatever diagnosis. I have felt that way. In every video you post and every story and all the work you have put in, he has sooo many positive things going for him. You could have a child that wont make any eye contact or laugh or hug and cuddle you. Show you his love for you. This would make learning from you so much harder and the road longer. His young age gives him the best outcome. His receptive skills look good his expressive will come. When it does i think this kid will have very little limitations that he cant learn how to deal with. Not having verbal communication skills would frustrate anyone! Now you have a diagnosis and im sure more services with that. With these services you will see even more progress i bet. He seems very bright and very teachable. I have no doubt he will speak one day. Like, at all. Honestly. Then make up for lost time and never stop! ;))

  13. I know you will have a good outcome down the road but looking back the path is so hard and so not fair. Mother’s with kids who have zero delays don’t have any idea of what a gift they were given. We are supposed to just enjoy our kids being little. This sh*t is werrrrrk! 😉

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