Instead of Answers We Have More Questions

4c9728ff5aaafc75a9bbf38abdb3ca5dYesterday was really tough. And for more than one reason. I actually thought about sugar-coating it because I feel like lately I have been posting such bad/sad stuff. But if we can’t be honest in our blog what hope do we have!

A guy that I went to college with committed suicide last week and the funeral was yesterday. Tuesday night the whole gang from college got together. It was one of those moments where you haven’t seen each other for 10 years and all of a sudden you are best friends again. It was wonderful. And I stayed out way to late to soak up every last second with them. This old mama was out until 2 a.m! I don’t think I have done that since I was with them 10 years ago. I kid. But still, I felt awful when the alarm went off at 7 am for Cooper’s speech therapy appointment and evaluation by the child psychologist. We were told my Cooper’s therapist that this Dr. would observe and give us ideas to make transitions easier. And hopefully make life a whole lot easier.

The appointment started really well. The Dr. introduced herself in the waiting room and she was very friendly. I like friendly easy-to-talk to people. They put me at ease right away. Cooper’s therapist Toni came out and Cooper went gaga for her as usual. Ran up to her, hugged her and grabbed her hand to go play. We all walked back to the open area and Cooper went right to the computer to play with Toni. The Dr. stood by us and chatted. She gushed over and over again about how cute Cooper is. She also said she was really impressed with his sweetness and eye contact.

Toni said to prepare though because it was time to transition away from the technology to a non-technology game. Cooper did okay. He got mad and whined and then moved on. Score. He played an animal game for 2 minutes or so and then wanted to go back to the computer. And all HELL broke loose. He threw the animals, pushed a chair, screamed and freaked out. I stepped in and helped him transition into the therapy room. Again, score. Toni got out the iPad to do picture recognition and Cooper saw the Thomas the Train app and all hope was lost. Toni decided to let him look at the app together and my perfect angel returned. He laughed and pointed and made eye contact and sat with Toni like his world hadn’t just ended. The Dr. recommended removing some of the technology from Cooper’s life. He loves it too much and isn’t at the point where he can handle the transitions.

I snuck out of the therapy room and went into the observation room with the therapist and my husband. She asked a few questions about Cooper. Jamie and I are done sugar-coating stuff and we answer honestly.  She then came right out and said I see some autistic traits. I see a few sensory things and I see the extreme behaviors. But what I don’t see is issues with his social behavior. And as a Dr. who diagnoses Autism, I have to see social issues in order to tell you that he could be on the spectrum. His eye contract is great and his need for a reaction is exceptional.

First, my heart stopped beating. My face got hot and panic started setting in.  I wasn’t here for a freaking autism diagnose. Who said anything about autism??? I want help with language. I want help with getting Cooper from the tv to something else. That is it. Second, she was speaking the truth. And I knew that deep down.

So what now?

She wants to see how he interacts with other kids and would like to observe him in his daycare setting next Tuesday. Fine. Ok. I’m sure he’ll do fine and I am going to try to not worry.

But can someone tell us about why our son doesn’t talk?

So, let’s say for the sake of conversation that Cooper “is” autistic. Fine. He is definitely high functioning. And high functioning kids talk. So, why the F doesn’t he talk? Nobody seems the need to talk to us about this. Do we need to go see specialists and big fancy doctors?

I feel really blind sighted by this visit from the psychologist. Instead of answers we get more questions.

And to follow-up that appointment I went to a funeral for a 31-year-old man and listened to his friends and family tell stories about his amazing love for life. Life isn’t fair. I hate it sometimes.

 

 

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9 thoughts on “Instead of Answers We Have More Questions

  1. I am so sorry for the loss of your college friend.

    The situation for your son is very frustrating, I know. Unfortunately, at such a young age it’s difficult to pinpoint an exact problem, whatever it may be. Kids differ so much from each other. I know it’s irritating, but it sounds like you have a good team working with you and with him. A team that’s not just jumping on the diagnosis bandwagon just because they can. Trust me, the right diagnosis is worth the wait.

    Just throwing this out there – Each Autistic kid has different characteristics from the other, however almost all of them struggle with social behavior and eye contact. So, since your son does not have issues in those areas, then the chances of that being the cause are reduced quite a bit. Also even if it were that, he’s not ‘doomed’. The therapy these days is amazing and many of those kids end up succeeded just as anyone else would. This is especially true with kids who are high functioning. Often times, after a few years there’s very little difference at all. Again, it’s about being patient (much easier said than done). Doctors seem slap happy to diagnose any child with ASD now days, so at least yours are taking their time. In the meantime, I’m sorry. I know it’s tough. Tough isn’t even a strong enough word.

    • Thank you. You are completely right. I don’t want to rush anything it’s just the unknown is so scary. The best part of blogging is meeting other people like you who write such amazing comments. Thank you for this.

  2. Always be honest on your blog! It kept me sane so many times….

    And I can certainly see why you see the similarities in our boys! Jp was labeled “non-compliant–cannot score” on several formal evals. Transitions were hard for him, too. Have you tried a timer? We use it for everything and it is magic. Just an ordinary kitchen timer that he can push to start. He feels control so it is easier for him to accept and it’s not a shock so it stresses him out less. We use it for everything and I have noticed 100% difference.

    As for answers…you’d think they would be easy, but often they are not. It’s maddening but you’ll get there. I won’t pretend that I do know…but Jp had the sensory, the extreme behaviors, AND the eye contact and social issues…not autism. It’s not as black and white as we need when we want answers but I’m grateful for the grey now.

    Have to taken him to any vocal chord/muscle specialists? The extreme behaviors are common with limited to no language but perhaps it’s physical? Just a thought (that I am sure you have thought of already but I’m new here 😉

    • A timer…I love it. So question for you. When it dings does JP put away what he’s playing with? Meaning, Cooper will play on his Leappad and love it. Right now, I just prepare him that he needs to be done and eventually take it and hide it. I am wondering if we did a timer he could learn to put it away when he was done. I would love help in this area. He loves technology so much.

      No I haven’t taken him to vocal chord or muscle specialists. We always joke that Cooper is the loudest non verbal kid ever. He is always making noise but only in vowels. And often it is very high pitched. Was JP like that?

  3. I could have written this post for years ago. I remember wondering why he was so delayed in every aspect but no one would give me answers. It was when he was 3.5 and placed in a title 1 preschool that the teachers stated to make the same observations. The first doctors that mentioned autism didn’t Mentone sensory issues. The autism specialists said he was to friendly to be autistic. The neurologist Gabe him the diagnosis of pervasive developmental disorder not otherwise specified. He is on the spectrum he just doesn’t quite get social cues, doesn’t get personal bubbles. He is almost seven. His sensory issues are the bigger issue. Speech and language therapy made a huge difference as did ot.

    You are on the right path momma, it is an uphill climb but some of the views are breathtaking.

  4. Please continue to be honest on your blog. It inspires me as well for different reasons.

    And I have to say that you have some really amazing followers here — very smart and kind folks posting comments. Take care.

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