Eight years have gone by. So much has happened during these past eight years, but this day still stings. I know it always will and I think that I am finally coming to terms with that. This is the first year that I have not had panic and anxiety leading up to today.  I know that is a good thing, but part of me feels guilty for it. My greatest fear is to forget, to no longer feel, to have them fall away from my mind and heart.

‘Perhaps they are not stars, but rather opening in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy’ -author unknown

Tonight, I will look up into the stars and know that you are both shining down on us. Happy 8th Birthday, Mary and Christopher. I love you, always.

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.

I have been thinking about writing this post for so long. Almost two years, in fact. I’ve started it many times, but I haven’t been able to find quite the right words.  Instead of using the perfect turn of phrase, I’ve decided to just jump in and use the imperfect prose that comes from my heart.

Many of you know that Joseph received an diagnosis of Autism Spectrum Disorder (ASD). It’s not something that I have hidden from our family and friends and have no trouble discussing with others. However, I have been hesitant to discuss it here because this format doesn’t leave much for conversation or questions that so often follow that statement. ASD is such a broad, umbrella diagnosis, it’s like saying I have cancer. . . Cancer can mean anything from something completely treatable, like a small melanoma that can be removed to a devastating, evasive disease like systemic bone cancer.  . . or anything in between.  Instead explaining ASD as a whole, I’d rather share Joe’s story and how it relates to him. If you’d like more information about ASD, I’d suggest looking here and here.

We started noticing some speech delays with Joe right around 2.5 years old. At first I thought it might be because of the stress of moving from Columbus to Chicago, but after talking with our pediatrician (and some great advice from my mom) we sought some assistance through Illinois’ Early Intervention Program. (EI)  This state-run program gave us access to in-home speech, occupational, and developmental therapy until Joe turned three, after which he would receive therapy through our local school district. I cannot express the gratitude and love I have for our therapists, especially Jamie and Janna, they were amazing with Joe and provided me no small amount of comfort.

When Joe turned three, he transferred into our local school district’s Early Childhood Special Education Program (ECSE) – a specialized preschool program for children with special needs. Again, we were blessed to work with some truly wonderful, talented teachers, therapists, and staff. They made the transition of Joe going to school, something I was anxious and scared about, a true joy. Joey absolutely bloomed and his progress was astounding. I know that it is because of the dedication of that team that allowed it to happen.

After Joe turned three, we took him to a developmental pediatrician, Dr. B with Lurie’s Children’s Hospital. Dr. B did a lot of testing and came to the conclusion that that Joe fell somewhere on the Autism Spectrum. He is considered to have a “scattered diagnosis” meaning that some typical traits are not present in Joe, but others were. Overall, he’s considered “very high functioning, highly verbal, with some  issues with sensory processing.”

Joe continued in the ESCE while we lived in St. Charles and again once we moved here to Grand Rapids. He is excelling in the program here and we will soon find out the plan for Kindergarten. He is testing very high academically – currently reading on a second grade level, understanding math concepts, spatial relations, and more. His challenges includes peer interaction, some pragmatic and social speech skills, attention span/focus, and compliance with non-preferred tasks.

I can’t overstate how much of an impact EI, our schools’ ESCE program, and all of our wonderful educators and therapists have had on Joe. Especially now when many of those programs are in jeopardy. I cannot imagine where we would be without these programs. We are also VERY fortunate to have insurance that has helped defray the costs of therapy, many families are not in that situation.

I wanted to share because I know that there can sometimes be misconceptions about ASD and a tendency for some families to hide their diagnosis for fear of people not understanding or stereo-typing their children. I feel that ASD is only one small part of Joe, but it does help make him who he is. Why would I ever want to hide part of that beautiful boy away? I never will do that, it would dull his sparkle.

All in all, Joseph is like any typical five year old. He loves playing with cars, trucks, trains, and legos. He loves being outside and exploring the world. He loves to swim, sing, dance and play. He loves his iPad and watching anything by PIXAR. He is stubborn, generous, sensitive, strong, kind, smart, and silly. He brings joy and happiness to all that meet him and is truly my sun and stars.

April is Autism Awareness month. Please consider participating in some way. Perhaps by lighting it up blue, join a walk, or donating supplies to your local school’s Special Education department.

Time continues to pass. All the while there is a place in my heart that I continue to visit. A tiny place, a sheltered spot from the everyday hectic living that must go on. Like a park bench off the beaten path, near enough to the action to watch the world go by, but removed enough to be its own little oasis of calm. I go there often to remember, mourn, and think of what could have been.

Sometimes their are brief flashes of memory. Exquisitely miniature toes, the warm of a tiny body next to me. Sometimes there are regrets, why didn’t I ask to hold you both together? Why didn’t we take more photos?

As I watch your brother grow, I can’t help but think of both of you here with him. Playing with trains on the floor, clamoring for cookies, giggling under the covers.

The years pass, but you never fade. They only make those few precious moments with you gleam brighter as I hold you in my heart.

Happy 4th birthday, Mary and Christopher. We love you so.

Why does it seem like yesterday and yet a lifetime ago? Three years. How is this possible? I cling to your memories, what little we were able to have together. Most of it while you were inside me. I used to chuckle and call you my little octopi, you would both wiggle and squirm and wrestle one another. I think about the brief moment that I got to hold you both, amazed at your tiny preciousness. Rosy pink and oh so fragile. Such fleeting time together, but you are both etched into my brain and my heart.

Your little brother grows and grows. He is so full of life, I sometimes wonder if he will burst. A ball of energy and always on the run. Quick to smile and laugh, he brings joy to everyone. I know that you are both looking after him, keeping him safe in this world.

I struggle this year because we have moved away and I’m unable to visit you today. I feel overwhelming guilt that we are not near you. Please know that no matter where you father, brother, and I live on this earth, we all love you and keep you close to us in our hearts. I love you Mary and Christopher, Happy Birthday my loves.