The lonely solitude of having special needs

This morning, as the teenagers in our home were eating breakfast and getting ready to head off to summer school, Sarah was packing a lunch for Micah. A morning snack, a sandwich and some chips, and another afternoon snack. Today marked the start of his week-long acting camp, a special program through our local children’s theater. It is an inclusive camp, incorporating both children with varying special needs and those without.

Micah has been very excited about attending this camp. He was looking forward to going to a camp this summer because to him it feels like his brother Ezra gets to do all the fun things, like take dance classes and piano lessons. But Micah knew that this was a camp that he got to attend and that his brother would not be a part of. Something all to himself. 

He told everyone he’d be good at acting because he knows how to act like a grandma on command. It’s a bit that he does for laughs with our girls or anyone else that he can get to listen where he says in a very high-pitched and dramatic voice, “Oh, hi! Hi!, I’m your grandma! Oh, hi! Oh, hi! I’m your grandma!” It’s pretty much a winner every time. 

With the confidence that comes from a guaranteed winning bit, he was ready for his acting camp this week. Micah and his brother spent the last two weeks in Indiana with their Grandma and Papaw for “Grandma camp” – something that has become a yearly tradition for a few weeks in the summer months. It started out of necessity towards the beginning of the pandemic in 2020, and has happened again these last couple summers since. It’s something that both Ezra and Micah talk about year round. 

This past Saturday I drove to Hannibal, Missouri, the approximate halfway point between Boys Town and Eastern Indiana, to pick them up from Grandma camp. In years past they have stayed longer than the almost two weeks they had this time around, but this acting camp cut that short this year. This was the only two week stretch in their busy schedule where we could make it work. So we did.

Today was the big day. The start of acting camp. Micah was very excited this morning. He was happy and positive about how he felt this would all go. It gave me some hope. I felt a sense of optimism as I dropped him off with the young staff that was taking attendance. He lined up with a couple other students along the brick wall. He looked prepared for the day, lunchbox slung over his shoulder. 

“Bye dad, I love you! Have a good day!” 

I walked back to my car, and drove off and felt pretty good about the chances of the day going well for him. 

Micah, ready for the first day of acting camp

When I returned back home the girls were at school, we had no appointments on the calendar, and Lydia was getting ready for a day at a lake with some of her friends. That meant that it was just Ezra, Sarah, and me at home. 

With Micah at his acting camp, I had some rare time alone to spend with Ezra. So I asked him if he’d be interested in seeing the new Thor movie. He immediately said yes and got himself ready to go to the movie theater. He and I had a blast watching the movie together, and Sarah was able to have some rare quiet time at home to herself. 

When Ezra and I returned home I was happy, very content with how things were. Micah at camp, Ezra was bursting with excitement after the movie. Sarah was relaxed on the couch in our living room, Lydia was off enjoying time with friends.

I’ve learned to appreciate these sorts of moments for what they are. Things can shift and change quickly. I can go from feeling remarkably carefree to dramatically overwhelmed within a few blinks of an eye. 

After coming home Sarah mentioned to me that Micah must be doing well at camp because she hadn’t gotten any calls or texts. No matter how well things seem to be going for him in a day, whether at school or at a camp like this, anticipating a phone call because of aggressive behaviors or because Micah is yelling or throwing some sort of tantrum is a normal worry for us anymore. His behaviors are predictably unpredictable. He doesn’t do well with being challenged, whether intellectually or socially. And then he feels the shame of that which immediately causes him to spiral into a tailspin as the adults quickly make Mayday or SOS phone calls to Sarah or me, asking us to come help them and pick him up.

When we returned home from the movie, Ezra went to his bedroom to play for a while. I, too, went to my bedroom to journal and reflect for a bit. Later, as I was journaling, I heard Sarah answer her phone. I recognized the tone in her voice. It was about Micah. It was an SOS phone call. I grabbed my keys to drive over to Micah’s acting camp.

When I arrived, a young woman opened the front door, peeking out her head. She asked who I was there for and I could see the relief in her eyes when I said, “I’m here for Micah Seaman.” 

Micah was standing with another young woman, the same woman who had taken attendance a few hours earlier, in the entryway of the building. The inviting energy she had that morning had changed. She looked frazzled and overwhelmed. It was clear that when she got up this morning this scene was not in her “possible scenarios” inventory. Micah was upset, but fairly calm when I arrived. When I walked in he looked up at me. Tears immediately welled up in his eyes. 

On the wall behind him cords were hanging out of an exposed rectangle in the brick. Some of the cords were strung out towards the entryway doors. I looked to the floor to see a faceplate of a security system keypad and the green silicon circuit board scattered in pieces near the doorway. I looked up at the two young women and asked if Micah had done that. They nodded. I closed my eyes as my face winced a bit. I apologized and one of them said softly, “It’s ok.” Micah looked away.

I’m thankful when this is the sort of response of the adults around him. Because yes, it’s ok in a way, like, it’s just stuff, and stuff can be fixed. But it also is not ok. Micah destroyed the property of an organization that was helping out kids this week learn to act and appreciate the theater. 

When people say things like, “It’s ok.” I think they also are giving me permission in their own way to go on ahead and give Micah the attention he needs in that moment. It’s as if they are saying, “Hey, don’t worry about this right now. Your son is the priority. He is what matters right now.” And it’s also like they want to reassure me that I will not be the one having to clean up after him in this moment. They’ll take care of it. I am grateful in these moments these days. Gratitude for the empathy of strangers has taken the place of embarrassment.

Micah came outside with me and I crouched down to get down at his level. He had those tears in his eyes still, and an expression that seemed to be saying, “What is dad going to say to me? Will this finally be the last straw?” Micah in these moments is Micah at his most heartbreaking. Waves of shame wash over him. He knows what he has done was wrong to do, but he also feels as if he had no control over his actions. His feelings of regret are potent, and they seem torturous from what I can tell. 

As I was crouched down, Micah leaned onto my shoulder and hugged me tight. He didn’t say a word. He knew that nothing he would say would make it better. He just gripped me tight, as if he were afraid that if he let me go I would disappear, leaving him feel even more alone than how he felt already. 

I noticed two pairs of scissors sitting just outside of one of the double doors leading into the entryway. I didn’t know if he had threatened them somehow, or maybe they simply saw them and preemptively placed them outside, out of his sight. As Micah was hugging me, I saw one of the two women slowly slip her hand out of the crack of the door and carefully bring the two pairs of scissors back into the building without Micah noticing.  

The other woman had stepped away to find Micah’s lunchbox so that we could go home. She found the one she thought was Micah’s and brought it to us. When she handing it to me, she gave me an empathetic smile, eyebrows pinched together in concern, or maybe in a sort of disappointment that they couldn’t get Micah to calm down enough before they had to call us.

I thanked them, and held Micah’s hand as we headed back to the car. I opened the car door for him, and he got in quietly. After fastening his seatbelt in the backseat of the car, Micah positioned himself so that I couldn’t see his face in the rearview mirror. He was still feeling the shame and regret from his tantrum. 

“I didn’t want it to go this way. I didn’t want this to happen. I told myself that this was going to be good day, that even if I got mad I wouldn’t let myself throw a fit. But it happened anyway. I don’t know why! I tried to stop it, but I couldn’t. I couldn’t stop myself.” 

These sorts of self-reflections reverberate and bounce around my head in such a way that it mutes me. I rarely know exactly how to respond. I try to be empathetic, and reassure him while also attempting not to minimize the elements of how he behaved. I say things, “It’s ok to be angry, but we can never be aggressive with other people. We can’t hit or push or kick or bite people. It’s never ok to do those things. But we can find other ways to calm down, right?” And then I review some of the strategies to calm down we’ve tried I the past. 

“I guess mom was wrong. I can’t do camps. I can’t do any kind of camps. I’m not good at them. And plus, we didn’t even do any acting at acting camp. We just played games. We didn’t do any acting, yet.” 

I tried to redirect the way he was thinking about everything, but I’m not sure if it worked or not because he got more frustrated and put a blanket over his head and said that he didn’t want to talk about it anymore. 

As Micah hid under his blanket I thought about how even at a camp focused on inclusivity, allowing for kids on the autism spectrum like Micah to attend and have accommodations, he still struggles to make it through a single day. We still get a phone call to come pick him up. His behaviors are unmanageable. People don’t know how to handle him.

He made a scene, no doubt, in front of his fellow peers. He embarrassed himself through behaviors he says he is unable to stop. He even went into the day hoping for this situation to not occur. Perhaps he was hoping for the day to go smoothly without any issues no differently than Sarah or me. 

It’s interesting to hear him process a bit. He hates to recount these sorts of situations and analyze what he did, or what could have been done better. He wants to simply say he was sorry and move on. There’s no need to do a postmortem of the situation according to him. 

But he did say that during the first part of the day he did fine. It was when they went to the classrooms after lunch that he started to struggle. He started to not like what they were doing. And that’s where he started to throw his fit. 

“Tomorrow is a new day. I’ll try again tomorrow,” he responded in confidence, quickly trying to move us on to the hope of the future.

That’s what his amazing principal says to Micah when we are called to pick him up from school after some behaviors, or when he is unable to regulate himself. But I wasn’t so sure that this was going to be the case for acting class. I wasn’t sure they’d want him to come back. 

Acting camp ends at 4:00pm each day. I was called to pick him up before 2:00. He told Sarah that he wasn’t going to have a sweet snack today at 3:00 like he typically would. He thought that would be fair for him today. And when 3:00 rolled around he didn’t ask for one like his brother did. “I lost my sweet snack today, Ezra.” He told his brother. “Oh,” said Ezra. 

Micah walked over and sat at the foot of the couch. He asked Sarah if a friend could come over, but Sarah told him no because of his behaviors at the acting camp. “I’m lonely,” Micah said with a sadness in his voice. 

And it is sad. Having special needs is isolating. Even when there are programs for kids like him, they seem to not be able to handle kids like him. He was asked to stop attending his horseback riding lessons after he got upset one day while on a horse. This was a program established for kids with special needs or disabilities to be able to take horseback riding lessons. Apparently not his particular special needs and disabilities.

Sports didn’t work out for him. We tried simple lessons or leagues at the neighborhood gym we are members of. He struggles sometimes even with his buddy baseball league, though they are as accepting as it comes. 

We thought he could be helped through ABA therapy, and he had multiple ABA therapists over the course of a few months at the start of this year. But that was a flop in so many ways, and it ended up causing more harm and chaos than it helped. We ended that when the school year ended in May.

This afternoon the director of the program called Sarah to apologize for not being prepared to provide the support that Micah needed today. She said we would be given a refund this week of camp, but that there are classes that he could take in the future specifically and exclusively for kids with special needs. Maybe we’d consider having him come to those classes in the future.

In the meantime, Micah sits at home alone on the couch, a prisoner to his own emotions and brain. The solitude that comes with special needs is difficult. It’s lonely. To have a rare disorder or disease or disability is a lonely thing to live with and process. It seems a cruel thing, really, to be so wildly aware of it, but unable to do anything about it. It’s heartbreaking and isolating for the parents, too.

People who don’t experience this don’t understand what the constant anxiety feels like. I don’t expect people to understand, but I wish people could understand that when I go into these situations, they steal a piece of me, of my soul. That’s hard, and from what I can tell, it doesn’t get any easier.

In the solitude of my car, each time before I step out to face whatever might be happening with Micah, I pause and take a deep breath in through my nose, then slowly let the air back out through my mouth. My spirit, my soul, it gurgles up within me with groans that no human language could ever make sense of. I think it’s a humbling plea for help. A desire to not feel so alone in what I’m doing. 

Do we stop trying to put him in activities like these? I honestly don’t know the answer to that question. It seems wrong to assume he will always do poorly at camps like these. Sometimes he does ok, but usually not. But then again, if he never goes to any, then he can’t get better at handling them. But if we enroll him in activities like these only to have to pick him up early because of a fit, it reinforces Micah’s own internalization that he can’t do well at these sorts of activities. If that’s the case, then what are we doing?  He could have had another week or so at Grandma’s house potentially. Would it have been better just to do grandma camp than to attempt to have him participate in an inclusive acting camp only to last a few hours before he’s been asked to leave? 

I don’t know. 

Published by Andrew

a ragamuffin dad planting some sequoias

One thought on “The lonely solitude of having special needs

  1. My circumstances are different, since I’m blind. But your point about isolation resonates with me, since I’m often excluded from certain things by default, and normal people around me do not have any understanding of how I live my life, or how to adjust with me.

    I have one loving family, that is about the only thing which has kept me sane in all these years.

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