Life on the Spectrum: 7/12/18

So, Joey has been attending a little dinosaur camp this week through the park district. They’ve been doing little dinosaur/fossil crafts and stuff all week and he’s loved it. When picking him up, I heard another boy say “there’s an annoying boy named Joey” when his mom was asking him and his brother how the class went. His brother saw me and told his brother to hush and I just swooped up Joey and got out of there without responding because I didn’t want to confuse Joe.

It was like a physical slap in the face. A punch in the gut. I felt myself start to physically deflate and the tears welling up as we walked out to the car. (After Joey stopped to look at the world map mural and checking that Madagascar was represented, as one does.)

I immediately started hating myself that I didn’t say anything. But what does one say? To be honest, Joey can be annoying. He’s loud, asks a million questions, can be messy, strong-willed, and sometimes needs additional assistance or instruction. He is oblivious to personal space, will interrupt people, and sometimes sings or recites dialog to himself from TV shows/movies. But he is also enthusiastic, friendly, outgoing, and carefree. He loves to learn, explore, and discover. He shares with others and is always willing to help.

All this week, I’ve wanted to say something to this mother and her boys. I’ve thought of a million different scenarios, ranging from a calm, rational explanation of ASD to a raging mama bear attack that would point out all the faults of her parenting and how troll-like her children are. (They were not troll-like . . . maybe a little ogreish.)

So today was the last day of the class. I was walking in to get Joey and I passed the trio walking down the hallway to leave and again I heard the little boy say something about “that annoying kid” to his mom. They were actually past me and almost around the corner, very easy for me to let it go again. Instead, I turned around an said,”Excuse me, I’m sorry but I want you to know that Joey is on the Autism spectrum and that might be why he was doing some things that could be considered annoying.” They stopped and turned around. The mom and older boy eyes opened wide and looked a little stunned while the younger on looked bashful and was hiding behind his mom. ” And I’d really appreciate it if you could talk to your sons about being a little more accepting and understanding about those that might act differently from what they expect.” I was barely able to get the words out at the end without letting out a sob. The mom paused and asked if she could hug me and I let her. Why, I don’t know. I then just looked at her as asked her to speak to her kids again and turned around and walked the rest of the way to the classroom and got Joey. He was so excited and proud to show me his glue covered dinosaur model that he didn’t notice the tears in my eyes.

So, I gathered up the rest of his craft projects, checked the map mural (Madagascar was still there.) and came home.

Parenting a child with special needs is hard. It can be isolating, lonely, and oftentimes filled with guilt.  It’s painful to hear others say things about your child for any parent, but it’s even more hurtful when you know that some of those unflattering comments are based on his ASD. I am fully aware that I will not be able to shield Joey from this happening throughout his life. I know that kids, and adults, will look at his behaviors and judge him as “weird, annoying, a little off, etc.” I just hope that more will get to know him for who he is personally before they make their conclusions.

I hope that by sharing this story, others will think about how they teach their children about being different and will maybe dig a little deeper when they say that some “annoying” kid was in their class.

2018: Our life on the Spectrum

April is Autism Awareness Month. I wanted provide a small glimpse into our life and how it is affected by Joseph being diagnosed to bring awareness and understanding. You can read more about our journey here.

This has been an amazing year of growth for Joey. He is currently enrolled in a general education Kindergarten class and seems to be thriving there. He loves everything about school and takes great pride that he is “almost a first grader”. Joe receives speech and occupational therapy at school, in addition to private music therapy/lessons, and has some additional assistance from the resource room aide, his beloved Mrs. G, in his main classroom.

His teacher, Mrs. L, is wonderfully patient, yet firm enough to handle Joey’s considerable charm. She understands that his ASD gives him some extra challenges, but doesn’t allow that as an excuse or crutch. He is his champion when working with the rest of the staff to help them understand how his ASD “works” and does everything she can to make sure he is getting every opportunity. (I have volunteered in the classroom and have seen this for all her students. She is a true gem and I’m so thankful for her.)

Mrs. G is Joey’s cheerleader and possibly his biggest fan. Their relationship is so sweet and loving, I know that she would do anything for him.  It helps me knowing that he has someone there to give him that sense of security and comfort.

I have to say that the entire staff, have been nothing but warm, positive, and supportive to Joey. I love walking him into the school and seeing him say hello to the librarian, telling his gym teacher he’ll see him on Tuesday, or giving the principal a fist bump. His classmates have been amazing as well. His teacher explained that Joey has ASD and sometimes does things differently and they all take it in stride. After walking Joey into class after being absent for being sick, they all welcomed him back to school with hugs and smiles. It brought tears to my eyes.

This isn’t to say that we haven’t had some challenges this year. Joe’s impulsivity and stubbornness can lead to not wanting to follow directions or complying with non-prefered tasks. He also can find it difficult to follow spoken directions or adjust to things outside of his routine. However, overall, he seems to being doing quite well and continues to show improvement in these areas and I’m hopeful that, with the continued support, he’ll continue to thrive at school.

In addition to Joey’s current school situation, I wanted to share a little more about where he fits on the Spectrum. Although it is not an official diagnosis, Joe is considered High Functioning Autism (HFA).  Joey has been described as “scattered” when tested for ASD symptoms, meaning that some typical characteristics such as stimming and severe verbal limitations are not present while others, such as poor eye contact and sensory dysfunction.

Joey is bright, verbal, socially aware, and can show affection. He has age-appropriate academic skills. At first glance, most people do not realize that he has ASD. This creates a set of challenges that can be different than those who place elsewhere on the spectrum.  By being “high functioning” Joey is asked to navigate a world in a neurotypical way even though he has these extra set of challenges. This can lead to unobtainable expectations at school, judgmental attitudes in public, and sometimes even misunderstanding with family members. I highly recommend reading this article to understand why HFA is so challenging and that no matter where someone falls on the spectrum, “it is important to remember that autism is autism.”

April is Autism Awareness month. Please consider participating in some way. Perhaps by supporting a cause,  joining a walk,  donating supplies to your local school’s Special Education department.

 

Joseph 6.0

Another year has past and now I have a six year old. This year was a wonderful one, full of fun vacations, new adventures, and enjoying all that life has to offer.

Watching you transform from a pre-schooler to a kindergartener has been amazing. Your love of school has continued to bloom. I love seeing your confidence grow while learning to navigate all the ins and outs of being in kindergarten. You dearly love your teachers and classmates, referring to them as “your friends.” Watching you form those friendships and expand your circle is something that I have wished for you for a long time.

Your academic skills continue to amaze us, but I am more proud that you use that knowledge to help your classmates and be a leader. Your interest in science continues, and the questions about geography, weather, space and the world around you are becoming more complex and in depth. I love your curiosity and always wanting to know the answer.

You are still always so busy with your toys, whether racing your cars and trucks, building with legos, or building track for all of your Thomas trains. Your love of reading continues to grow and I can often find you quietly curled up with a stack of books. Some of your favorites right now are Do Dragons Love Tacos, Lost and Found, and any book by Mo Williams.  You’ve started to enjoy athletics; playing soccer, taking gymnastic lessons, and continuing your swimming lessons. You also have joined scouts and are a Lion Cub this year. You and Dad have had so much fun together building rockets and winning the Pinewood Derby!

I am astounded by how much you have grown. You’ve lost six teeth so far this year and lost your baby face and chubby limbs, morphing into a boy with long limbs and pointy elbows. However, you are still quick to share hugs and kisses and ask to sit on my lap every day. I am so blessed to be able to witness you grow into an amazing, wonderful, human being.  Happy 6th Birthday, Joseph William, you are my sun and stars. Mommy loves you so very much.