Mark & Mom, my loves

When people ask me, “how’s Mark doing?”, that has got to be the hardest question I’ve ever been asked. I’m a very open and honest person, so when the socially expected “good” rolls out, it’s usually met with a surprised “oh really?” look from the person who asked. And I have to admit, I have the same reaction when I hear myself say it. So I suppose it depends on your definition of “good”. He’s no longer spinning in circles, but he still chews on everything, toys, books and our furniture, and at night before bed, he runs from room to room stomping his feet and screeching like a pterodactyl. I attended his class field trip to the pumpkin patch last week, and while the other kids, who also have autism, mind you, are seated paying attention to the opening circle time activity, Mark lost it because he wanted to ride in the wagon that contained all of their supplies for the day. Imagine that feeling, the only mom in a sea of special needs families wrestling an alligator in the mud and leaves because he can’t ride on the wagon, and he doesn’t know why.

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Communication eludes us most of the time, though he has graduated to grunting in the general direction of what he wants and smiling vibrantly when we finally figure out the object of his longing. He has stopped crying during class, can hand his teachers a picture of what he wants in order to receive it and seems to be on the brink of verbal communication, or so we hope.

 

I received the following email from Mark’s teacher this week,

 

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This was our bright spot amidst the chaos that unfolded this week. Yet, even though we should be celebrating what seems to be his first word, we are cautiously optimistic. Mark has been in a variety of different therapies now for over a year, spending hours every week working on the most basic and simple concepts to build skills that were never there. About six months ago he would babble “mom, mom, mom” but then it disappeared never to be heard again. Such is the reality of verbal apraxia, one of his diagnoses, which is the epitome of “one and done”. And now, we are hearing that he said go. I have yet to hear it myself but I am waiting with baited breath to hear him intentionally communicate with me.

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Though I wish that I could bask in the beauty of Mark’s recent progress, we were presented with a variety of daunting challenges this week (some of which I am not ready to write about.) One of them was Mark’s insurance, which really is the bane of my existence. Without writing a novel about the nuances of coordination of benefits for dual covered individuals, it boils down to us having to pay thousands more next year due to increased out of pocket maximums, and the billing cycle of Mark’s ABA company in comparison with Kennedy Krieger, neither of which I have any control.

 

On Friday, since it was the 13th, Ike sent me a text that said “It’s Friday the 13th, I hope nothing unlucky happens to us”. I just laughed. And of course, later that evening there was another plot twist to our families story. When I stopped by my parents house, my Mom informed me that her cancer case was not the equivalent of an oil change like the radiologist at the John R. Marsh Cancer Center had suggested. Johns Hopkins notified her that her HER2 score was positive, even though they anticipated that it would not be. This means that Mom’s cancer is a bit more aggressive than what we originally thought, which also means chemo. So there it was. Thank you, Friday the 13th, you really outdid yourself this year.

In all seriousness, though we are disappointed at the thought of Mom enduring chemo and dealing with all of it’s lovely accompaniments, we do know that she has an excellent prognosis. We are filled with hope that once she gets past treatment, she will be free from the mental grip of cancer and move past this season of her life.

Mark will improve, Mom will move beyond cancer, and hopefully I will have much lighter things to write about. Speaking of, Jilli got a wad of gum in her hair yesterday, which timed out perfectly with her appointment to have her “Alice in Wonderland” hair chopped. So here’s our little lady with her new do 🙂

 

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down but not destroyed. 2 Corinthians 4:8-0.

 

Her Brother, Mighty

While most of the world was busy preparing for and celebrating all things Halloween, we had our own version of horrors at our house. Mark developed croup, Jillian dealt with a stomach bug and then caught the cold that turned into croup for Mark. It has been a rough week.

On Friday, while Mark was napping, Jillian climbed onto my lap and we watched some Sesame Street video clips that had been in my inbox from “The Mighty”, a web publication dedicated to highlighting the special needs world. The videos displayed a few different children with autism, both high and lower functioning. She watched as each clip introduced a different child and their family. One little boy used a tablet to communicate his needs and another little girl used sign language. I watched Jilli intently wondering if she would make the connection that her brother was like them. Instead, she asked me if one day she had to use a tablet to communicate. Developmentally she’s still in that egocentric phase relating most things to herself, but knowing Jillian’s old soul, I think she knew. After watching my favorite clip that interviewed a sibling of a girl with ASD, I thought that now would be a good time to tell her that Mighty had autism. She sat there in silence and didn’t say anything. I let it be.

A Sibling Story

Ike and I had never intended to keep his diagnosis from her, mainly because we didn’t think that it mattered. She loves and adores him and has no expectations. I honestly wish that we had that mentality. Of course we love and accept him, but we have the disadvantage of preconceived notions of autism and how difficult our and his life may be. Jillian just knows that Mark is her little brother, who pulls her hair and steals her toys.

 

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When Mark has therapy, Jilli will sit patiently (for the most part) next to me in the hallway as we wait for his session to finish. Different children come and go with varying degrees of disability. Sometimes we see a boy, maybe age 10 or 11, who requires a leash to be lead to the set of elevators in front of us. Never has she said a word. And later, when we’re in the car and it stops moving Mark will scream because that feeling of motion that regulates his proprioceptive system has stopped and must make him feel like jumping out of his skin. When this happens Jillian immediately launches into song, singing one of his favorites, and though Ike and I try the same tactic to stop his crying, it usually only works for her. She’ll also pray with me that God will calm him until the light turns green.

Last night I caught them wrestling in the living room. This always concerns me because Mark will sound muffled and even if I’m in another room, I will immediately yell at her to let him go. Yet this time, he was playfully entangled on the rug, giggling as Jilli rolled him back and forth. They were so happy together, and in that moment I felt glad that Mark was our second born. Sometimes I envy those special needs families that have just have one child because they can focus all of their attention and energy providing intervention for just one, but as time goes on I am becoming more and more aware of how important Jillian is to Mark, and how important Mark is to Jillian.

Perhaps one day she’ll ask more questions about autism and how it relates to her brother. Maybe it will slowly sink in and she’ll process it in her own way. I anticipate that she’ll talk to someone else about it, as this has been her MO. When Ike took Mark to California in the spring for MRT brain treatments, it never appeared that she was phased by their absence, even though they were gone for two weeks. But one day she asked Jacob (my sister’s boyfriend) if he ever missed Paige (my sister). He told her that he did and Jilli responded that she missed her daddy and Marky like that. And that was it. She never said anything again to me or anyone else.

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I am so thankful to have Jilli on this journey with me. One evening after we got home, she told me that one of the other kids at daycare who is younger than Mark can now drink out of cup like the big kids.  In a lackluster tone, I told her “that’s exciting” and moved on to shuffling through the mail, but then she pressed with “Mama, does it make you sad that the babies are learning how to drink out of a cup before Mighty?” And it hit me. She sees right through me. My girl knows how hard it has been to watch other children reach milestones ahead of her brother. Yet she has a way of encouraging me in wonderful ways like when she tells me “don’t worry Mama, Mighty will talk, I just know it”.  And in that moment, her sincere innocence and optimism is contagious and I want to believe her so badly that a little piece of me has hope that if she said it, it must be true.

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Now faith is being sure of what we hope for and certain of what we do not see.   Hebrews 11:1

the Bean