This is going to be a post about some news we received this summer that really shook John and I up a bit. I had made a few posts on Facebook about it but I wanted to post on our blog about it for those of you who are not on Facebook and for myself as documentation. And it will probably end up being therapeutic, which is always a plus.
Only having 2 kids, I would compare Taryn and Brett's developmental milestones to one another. Taryn has been talking since she was 20 months or earlier. Brett didn't talk as early but everyone would say, "oh, that's just the difference between boys and girls", and I would let it go. When Taryn turned 2 she had a lot of words. She could communicate really well with us. That was not the case when Brett turned 2. But again, I just let it slide assuming it was the difference between boys and girls. Then Taryn turned 3. I don't recall that there is anything that she couldn't have told us. Her communication skills were right on target. Again, this wasn't the case with Brett when his 3rd birthday rolled around. As his parents, we seemed to know what he wanted or needed but he wasn't using a lot of words. He was hardly pairing 2 words together at this point. He also wasn't using a ton of nouns and had zero adjectives to describe things. It was around his 3rd birthday that I began to become concerned. I made a mental note of a few things and I was really expecting to see leaps and bounds in his vocabulary and communication skills this 3rd year.
A month or two after his 3rd birthday I was asked to sub in his nursery class at church. As I helped with the children and their snacks I noticed something very interesting. All the children at the table (they were all the same age as Brett) were talking with each other, addressing each other, and addressing their nursery teachers. I was lost in thought thinking, "Brett doesn't do that". Then I noticed that all the children were happily eating at the table and that Brett wasn't with them. I looked around the room and he was lying down on the carpet in the far corner of the room by himself. He wasn't socializing or participating in the activity. I thought some more and came to the realization that I had never really seen Brett socialize or interact with other kids. He actively played with his sister Taryn but not anyone else. I had even watched other kids approach Brett asking him to play, but Brett just ignored them and continued doing whatever he was doing. This was also the case when I'd schedule playdates for Brett. He wouldn't talk to or interact with the little boy at the playdate. His social skills were now a concern of mine as well as his communication.
6 months after his 3rd birthday I had not seen a boom in his speech like I had hoped, and I was still concerned about him not socializing with his friends in his church class. A friend of mine told me about a center within our school district that did free evaluations for kids to see where they are at and if they needed any help in any areas. I knew that Brett needed help with his speech so I made an appointment for the evaluation on May 6th, 2011.
This 1st evaluation was given by an Occupational Therapist and a Speech Pathologist. All of their little tests were done through play. They tested his fine and gross motor skills, his speech and communication, his comprehension and asked John and I a million questions. They asked us to describe Brett and his behaviors. We told them about how Brett loves to jump around everywhere he goes. We told them that he loves airplanes and fish and how he takes a certain toy with him everywhere he goes. We told them that he liked to spin and hold objects up to his eye while spinning. We told them about how Brett could quote his favorite movies word for word and how he'd play out certain scenes throughout the day with props. We told them that Brett isn't fond of many people. He likes mom, dad, Taryn, and Papa. We told them that Brett didn't move from one activity to the next with ease. If we didn't change activities on his schedule, there was a meltdown. And we told them about how Brett is often in his own little world.
The therapists took notes feverishly as we described our little boy then went back to their office to write up the results of the evaluation. They came back and reviewed the results with us. They said that Brett was right where he needed to be as far as his fine and gross motor skills went. They confirmed our hunch that Brett was behind in his speech. Then in a moment, a sentence even, everything in my world changed. They told us that Brett was displaying symptoms of Autism...... Shortly after they had said those words, tears began to roll down my face, then they quickly added that only a Pediatrician could diagnose Autism and that they were not doctors. It didn't matter. They had said the "A" word. The therapists giving the evaluation also commented on what a sweet, kind, patient, and loving sister Taryn was to Brett. This also made me cry. She IS sooooo good and kind and sweet to him. She's his little angel that watches over and protects him. I had the tender impression that Taryn and Brett were a packaged deal. One wasn't coming to earth without the other. Brett was a surprise for John and I but they were always supposed to be this close together (17 months apart). It was always the plan. A very tender moment for me amongst the heartbreaking news I was receiving.
Well, John and I drove home and we were in complete denial. We had both been around Autistic children and Brett was not Autistic. We went on and on about how those therapists are not doctors and that Brett was not Autistic.
Even though I had totally discounted the evaluation we just received.....I could not get the "A" word out of my head. I decided to take the kids to the library and I was going to try to find some books on developmental delays. Brett still was behind in his speech. The evaluation didn't change that, so I wanted to find some books that would teach me how to help him. I found a book called Developmental Delays. Perfect. I took it home and started reading. They had chapters on speech, fine motor skills, gross motor skills, comprehension, all kinds of stuff. Then I came across a teeny tiny chapter on Autism. Out of curiosity, I kept reading. The chapter described characteristics and symptoms of Autism and I can not fully describe the numb feeling that came over my body as I read. Almost everything that was in this small chapter describing Autistic characteristics is how John and I both described Brett to those 2 therapists in his evaluation. As I read this chapter, all the light bulbs went on about Brett. I couldn't believe it.
Each day after this realization was a blur. I was completely numb and completely lost in thought every moment of every day. The kids would tell me that they were hungry. I'd walk over to the pantry, open the cupboard, and just stand there....completely lost in thought. I couldn't focus. I couldn't think of anything else other than Brett and what was happening. I was a mess. I was short with the kids. They sat and watched t.v. all day while I just stood in the kitchen lost in my head. Nothing around the house got done. John would come home and ask how my day was, and as I thought about it, I had done nothing. I had just sat and worried my day away. Every conversation I had with John was about Brett and all my worries. He was very frustrating to talk to because he didn't believe that Brett was Autistic. He wasn't in the same place I was. He wasn't the comforting husband that he had always been. It took me 3 weeks to do it but I finally made the phone call and set up an appointment for Brett with a Pediatrician a friend had recommended. I was looking for a Pediatrician who had been practicing for 10+ years and who was very thorough.
As I was setting up Brett's 1st appointment with this Pediatrician, I had told the receptionist that we were concerned about the results of the evaluation given through the school district about Brett being Autistic. She then told me that Dr. Josepher specialized in Autism, and that he had a background and history in it. Another tender moment for me. When I hung up, I burst into tears, and gave thanks. I felt so loved.
Brett's 1st appointment with Dr. Jo. was June 6th. He was a kind and gentle man, and I learned in reading his little bio, that they had on their new patient paper work, that he was the Chief Pediatrician at Denver Children's Hospital in the Developmental Delay wing for 14 years! He had a million questions for me and took a ton of notes. The appointment was well over an hour long. He watched Brett and tried to interact with him. I left trusting that this man had the knowledge to tell us what was really going on with Brett. And I felt a small measure of relief knowing that I had taken a step, for Brett, in the right direction.
On June 13th we had another appointment with Dr. Jo.. It was just me at this appointment and he had tons and tons of questions for me. An hours worth in fact. At each appointment he would never confirm or deny the Autism in Brett. He said that he is very careful with the label and wanted to be sure he had all the information he needed before making an official diagnosis. I loved that about him! At the end of my 2nd appointment with him, he asked that both John and I come to the next appointment. And he wanted me to bring some of the toys that Brett liked to play with. He wanted to see how Brett played with his toys.
June 27th was our next appointment with Dr. Jo.. We had Brett's toys and Dr. Jo. watched him play and tried to interact and play back with Brett. He did some tests through play using cards and stuff. For the majority of the appointment, we all sat silent (per Dr. Jo's request) as the doctor interacted with Brett and watched him handle various situations. This went on for about an hour, then Dr. Jo. talked to us about his notes and what his final diagnosis was. After 3 long evaluations, hours of tests, questions and notes, Dr. Josepher diagnosed Brett with Autism. I knew that that was going to be the diagnosis and was prepared to hear it. John, being behind me in the mourning process, was not prepared to hear that and immediately broke down. It was so sweet, Dr. Jo. sat there and cried with us. I just love that man and I'm so thankful that we were lead to him.
The days and weeks that followed were hard. John would come home and tell me that he could hardly focus at work or get anything done because he was lost in thought thinking about Brett. I still battled this myself. And I had no idea what to do with this new diagnosis or what to do next. I beat myself up with guilt as one day after the next went by without finding a therapy, doctor, or therapist that could help Brett. It was very stressful and VERY overwhelming.
We had another big evalution through the school district coming up in July, where there would be more in depth testing, and an I.E.P. would be written up for Brett. I was a nervous wreck and had no idea what I was doing. My mom has worked with my brother Jade and all his I.E.P. drama since the 3rd grade, so I asked her if she would fly up and help me.
The day of the Child Find evaluation came (July 21st) and I was so relieved to have my mom there. She knew the questions to ask and what to say. I'm soooooooooo glad she was able to fly up. I love her so much. And the week that she was here she helped me with all the tasks that I had been too overwhelmed to tackle. We called therapists, called our insurance, called the state, set up appointments. It was amazing! They were all the things that I knew I needed to do but couldn't get done with all the roadblocks I had put in my way.
May 6th was the day that I was completely knocked off my feet, hearing Brett's name and the word Autism together for the 1st time. From May 6th until July 30th (85 days) I was lost/stuck in a tailspin. It helped me so much to have my mom here. She was the only one that could and did help me sort through the overwhelming about of information out there concerning Autism. We found research on diets and made menu's, she read about which supplements Brett would need, then got my dad on board and had him research information. She was amazing. Had she not flown down when she did.....I swear, I'd be in the loony bin. I was headed for a nervous breakdown. After she left, having accomplished all that she helped me accomplish.....it was the best I had felt in 85 days. The feeling was indescribable. I was a mess, lost, and completely overwhelmed, but she pulled me out of my funk, and we found reasons to have hope, ways to take control, and strategies to help Brett heal. A gift I am so grateful for. I couldn't love anyone more!!!
I started this blog before Brett's diagnosis. Then I was knocked off my feet. I'm sorry that I have not been totally consistent with blogging. I'm still trying to get control of my life. I'll get there. Thank you to all my friends and family that have supported me in this trying time. You all mean so much to me. Your calls, cards, or notes have all come at the times I needed them most. I have hope. Everything is going to be okay. And I am soooooo grateful that Brett is mine. He is such a joy to our family. He's our little angel. And I wouldn't change a thing about him or take him any other way. He is perfect to me :)
