Mason's Smiles

Mason's Smiles

Tuesday, April 28, 2015

Mason's autism testing and diagnosis.



The big autism testing day had arrived. We arrived at Helen Devos Children's Hospital at 8am. Mason and I checked in and waited in the waiting room for around 15 minutes for the first appointment. Mason was in a good mood but was a wild man. Climbing the frog in the waiting room, rolling on the floor, trying to go in rooms, running down any hallway he could, and driving trains on any surface.

I was quite excited when they called us back, and he was contained in one room. We first met with a clinical psychologist. He observed Mason playing with toys in the room, asked me a lot of questions, and tried to play with Mason in specific ways to make observations. Mason was mostly regulated during the session and gave pretty accurate observations of his play and behaviors. I would say that the only thing he didn't show was his usual interactions with me as he was checking out everything in the room. The psychologist was really nice and knowledgeable. He answered all of my many questions as well. 

After going back to the waiting room for another insane 20 minutes of waiting with Mason, we were called back to the behavioral pediatrician. He explained that his job was to see if there would be something going on medically as well as autism. He told me that he processes a lot out loud, which was helpful to know. Mason was into every bin of toys in his room. The doctor commented on Mason's hyperactivity and impulsivity in every action. He made note of the fact that Mason had a hard time finishing his ideas because he is always distracted by another idea. This is something we have heard from other therapists. Then the doctor asked me a lot of random questions about Mason. About his head size, his hand shape, his eyes, his gait, and so much more. Mason was getting tired by this point so snuggled on my lap with his bunny and pacifier. The doctor was surprised that Mason could calm and snuggle in my lap. He also said that he considered Mason's strengths to be atypical in some ways. While Mason definitely fits the autism diagnosis, the doctor felt like there were some behaviors that are unique. Based on Mason's behaviors and physical characteristics, the doctor recommended doing some genetic testing to see if there is something else also going on with Mason.

The final appointment in the testing was with a speech pathologist. Mason was super tired by this point, so a lot of the appointment was me reporting information about Mason. He's been seeing speech therapists for over a year now, so I knew what to expect. Mason also had to hide behind a wall to poop during the appointment. The joys. (:

We just received the official report back on Friday. Even though everything in the report was expected, it still felt overwhelming to see all the information. He now has an official autism diagnosis. The psychologist wrote that he was at a moderate level. The behavioral pediatrician added that Mason has hyperkinesis of childhood with developmental delays. I had no idea what that meant, but Google tells me that it is like a more serious ADHD that's diagnosed in young children. They also noted that they were not able to assess cognitive ability at this point. The doctor did mention in the report that he would not be surprised if there was cognitive impairment. This was a hard sentence for me to see as I am still really hopeful that he does not have impairment in this area as well. Then the doctor also recommended the genetic testing like he told me during the appointment. They both recommend Mason going to ABA (applied behavioral analysis) therapy, physical therapy, occupational therapy, and speech therapy. Thankfully we have all of those in place except ABA. 

Mason's pediatrician also received the report and called to follow up. They told me they made the referral to genetics. We will get a lot of paperwork to fill out. When we send it back, they will call us to make an appointment. They will also send us a list of ABA therapists that we could go to.

So that is the big update with our sweet Mase Man. When I asked Zach to give me his opinion on this post and add anything, he told me that it was really factual and didn't have a lot of my feelings in it. The thing is...I'm having a hard time figuring out my feelings. I think getting the report kinda put me in a numb state. There are a few big, new pieces of information from the doctors that would usually bring a lot of emotions to the surface. In the past year, we have heard a lot of hard information about Mason from a lot of therapists and teachers. I think I've gotten to a place where new, difficult information has become our new norm. No information is shaking me up because I feel like I have been continually shaken up throughout the last year. I don't think it is a bad or a good thing, it's more of a coping mechanism on how to move forward and get Mason the help he needs.

So many things are going on for Mason, and he has no idea. Poor little man just goes from one appointment to the next. We are hoping that all of these diagnoses and new supports will help him grow and be the best, happiest Mason he can be.

Monday, April 20, 2015

Mason's terrible, horrible, very bad day

I don't think words can describe the heartbreak of watching your child go through an extreme, destructive tantrum. The heart wrenching and actually physical pain in my stomach as I watch one of my greatest loves hit his head continuously on the wall or roll into walls overwhelms me. The desire to do anything to take his pain away leaves me feeling helpless.

Today has probably been one of Mason's worst days with his emotional regulation. It always hits when you don't expect it. He's had bad tantrums, but it's been months since an insane one. He almost always has an ok or good day at school. His teacher had just told us that Friday was probably his best day at school ever. Then a bad night of sleep happens. Other parents of autistic kids know that sleep for a kid with autism is like a roller coaster. Sometimes their little bodies and minds have a hard time settling even if they desperately need sleep.

As I woke up to feed Jonas at 2am, I heard Mason awake in his room. I knew that was a bad sign. He woke up not fully rested. His teacher said that he wouldn't stop crying or tantruming at school. I got a call from the school nurse saying that Mason wouldn't stop tantruming. He threw himself on the ground and hit his head pretty hard. She said that he wouldn't settle down and we needed to pick him up. Zach left work to get him. All I wanted to do was to leave work and take care of him.

Thankfully Mason was happy when Zach picked him up. Mason and his daddy had some nice snuggle time. Unfortunately, Mason couldn't fall asleep for a nap. His danced and ran in place happily in his room, but he would not sleep. Then he pooped. And took his diaper off. And had poop all over himself. And then has a bath. He has the best daddy ever.

After bath and relaxing with daddy and mama, it was time for bed. Unfortunately while in his room, Mason found and developed an obsession to a cap to a bottle that he had snuck in. We took it because it was a choking hazard. That's when all hell and destruction broke loose. Mason banged and pulled on the blinds. He yanked down his curtains. He pulled on the one shelf in his room. He pulled down his headboard. He tried to pull off the duct tape the tapes the two cords to the wall. He banged his head on the wall. He continuously threw a toy against the wall. He rolled off his bed. He kicked the wall. We watched. We intervened. We tried to keep him safe. We cried. We didn't give in to giving him the cap. Then he finally crashed after over an hour of insanity.

This is hard. I feel like that is the understatement of the century. All I want to do is the help him and take his pain away. I just want to help him communicate. I want to help him understand why he couldn't have the cap. If only I could help him process his emotions instead of him continuously trying to hurt himself. If it's hard for me to watch him struggle, I can't imagine how hard it is for Mason to try to navigate this world that doesn't make sense to him.

No matter how bad of a day he's had, the simple things that he loves make him happy. He will wake up tomorrow morning (after hopefully a good night of sleep) and give us one of his famous big smiles. He will give me a hug and let me hold him like a "baby." He will laugh and laugh at his favorite tv shows. He will babble goofy things and play silly games. And best of all, he will snuggle with us under his blanky with all his lovies. And I will take the happy moments. Then I will tell him over and over how much I love him. I will kiss the bruises on his forehead. Hopefully when another insane tantrum happens, he will have that love in his sweet little heart.



I asked myself if I wanted to share this with you all or if i just wrote this to help me process today. I thought about how this is autism awareness month. It's not "only bring awareness to the light-hearted, feel good stories of autism" month. I want to bring awareness to the reality of autism. The heart wrenching, difficult times as well as the beautiful times. Here's to the hope for a beautiful tomorrow.