Apr 14

Adjusting expectations.

Posted by Lookie Boo in Autism Awareness, Jude Dylan

Just because you’ve met one person with Autism, doesn’t you’ve met them all. I find this a common misconception made by most. A misconception I used to have. Jude is considered what some would label “high functioning”. Most people are surprised to also learn that he actually tested in the “moderate” category. April is Autism Awareness Month and in honor of that I’d like to share a little more about our personal journey.

Friday, I got ready (for far too long probably) and packed the kids up to go on Jude’s field-trip to our local fish hatchery. Thursday, when I had picked up Jude from Preschool his main teacher (aka my hero) said to me, “Are you excited for tomorrow!? It’s going to be a TOTALLY different visit than last year! He’s progressed so much!” I smiled widely and agreed. The last time we visited with Jude’s class, he had a REALLY hard time. Was laying down on the ground. Screaming. Trying to injure himself and being completely overwhelmed by the experience. His only way to escape/cope at that time was to run around in circles, hide under my legs, etc. I smiled wide because he HAS come so far. From completely non-verbal to ordering me around the house. From being unable to enter a grocery store without having a complete meltdown to asking me to to take him to Target so, “I can haz smoothie there, Mama!”

Upon arrival Friday, I was feeling even more excited. We’d miraculously arrived early. Both kids joyful. We were all wearing clean clothes and nobody had pissed themselves yet.

But once we came to the courtyard to meet up with our friends, I could tell he was upset. I wasn’t sure why. I wanted to comfort him so I offered all sorts of suggestions and tried to remain calm. “Are you hungry Bug? You probably need to eat lunch? No? You wanna run around with your friends?” His agitation continued and not even the attempts of his teachers and peers could calm him. I ended up having to put him in timeout at some point because he was so out of control.

After what felt like a very long, sweaty eternity, the tour guide came to welcome Jude’s class to come inside. Thank GOD, I thought. This will get easier now.

Once inside, the kids were asked to sit on the carpet while one of the tour guides talked with this giant stuffed fish about bugs or something. I’m not quite sure, because Jude was sitting in the middle of his classmates, crying. Wiping his snot all over his shirt. Two of his teachers continued to try and reason with him. I thought maybe if I sat with him, maybe then he’ll calm down. So I went to him and held him. Maybe if I rock him, I thought. So I began to sway from left to right. I rubbed his back and whispered “shh” in his ear. I smelled his smell, like frail hay and maple syrup. But he did not stop crying. When I tried to lift him to remove him from the group as to not be a bigger distraction, he made his limbs loose and fought me. As if he was putting all of his dead-weight and then some. A teacher lifted him and tried to take him for a walk outside. Nope. Ruby tried to comfort him, hug him. Nope. His trapped frustration only grew.

Eventually, I caved. I told myself to let it go. Let go of the expectation that Jude was going to have a different experience this year. I pulled Ruby and Jude’s hands and began to drag them both out of the room, embarrassed. Feeling like a complete failure.

During our walk of shame out the door, his teachers gave me soft, understanding looks of support. While almost out the door, Jude’s main teacher said softly, “I’m so sorry.” This is where I lost it, I tried really hard not to cry, but the tears left my throat and escaped my eyes. “Thank you. It’s okay” I choked out.

The walk back to the car was about 1/4 of a mile. The whole way, the three of us sobbed. Sobbing and pissed off at Autism. For taking away Jude’s ability to communicate his frustrations. For reminding me that no matter what plans and expectations I may have in my head, Autism can strike. For making me angry and wondering why I’m not “good enough” to fix my child’s pain. Ruby cried how it wasn’t fair. She’d sat like a good girl. She’d done everything she should, everything I told her to. Why was she now being punished?

We got to the car and I continued to feel hot, wet, unstoppable tears. I strapped the kids in and sat in the drivers seat, beginning to feel the cool air from the air-conditioning tickling my face. I wiped my tears away with a napkin. I took a handful of deep breaths. I put my shoulders back. I remembered I am in control of my own happiness. I reminded myself I have to be strong for my children.

So I put on music as we drove away, only 30 minutes after the field-trip had begun, singing at the top of my lungs. At first Jude was more agitated. But I just kept singing. Ruby looked confused. But eventually, they both joined me. Not knowing the words to Death Cab For Cutie, but sing-mumbling their little hearts out.

In that moment I knew we would be okay. We had escaped from Autism for a while. We didn’t allow one small defeat contradict the rest of our day. Everything was gonna be just fine.

When we got home, Jude came and laid in my bed. I laid my head down next to him. He placed his small, cool hand on my sweaty forehead. “Mama? I love you Mama. I’m gonna hug you.” he said, sweetly. He wrapped his tiny toddler arms around me. Tears began to fall again, but not because I was sad. Because I was lucky. Lucky to experience the gift of unconditional love and affection my children give away so freely.

There are times where I am so pissed off that my son was not born “typical”. I watch him struggling and upset and I want to fix it for him, take it all away. I resent it when I begin to pity myself because I know, “It could be worse”. I’ve learned to so quickly dismiss myself. Yet, sometimes our frustrations sneaks up on us. So quickly it punches us all in the gut. No matter what we’ve done to prepare ourselves, its unavoidable. No amount of therapy, school, books can take that feeling away. They teach us to lessen it. I remember one of Jude’s first therapists told me a few years ago, “Just wait. Things WILL get better.” She was absolutely right. We’ve gone from life feeling borderline unlivable to functioning well.

My son Jude is one of the happiest people I know. He doesn’t care if you’ve just met, he is probably going to give you a hug and try to kiss you too. He fills our lives with so much joy and spontaneity. I’m thankful for the journey we’ve embarked on, and the obstacles we will crush in the future.

1400439_10153567739945374_880073876_oAmanda Rose Photography