Parenting a child with special needs isn’t just hard, it’s scary as hell

My family has had a lot of great things happen recently. Our daughter was officially adopted into our family a couple weeks ago (I even got the new birth certificate in the mail today)! We just returned a couple days ago from a week long family vacation in the Rocky Mountains that was wonderful. A time together as a family that I hope created lifelong memories for my kids.

Today was my first day back to work in ten days. The time away was deeply needed in so many ways, and, as I had hoped, I came back to work feeling rejuvenated. It helps that the weather is pleasant and the trees and spring flowers are blossoming everywhere right now.

And while we were gone it seems that our girls here did well. There were no fires to put out today when we returned to work. That is such a nice relief. In some ways it was as if we never left, and we could pick up right where we left off. And that’s special. I don’t take it for granted.

After a very hard start to the year, life recently has felt overwhelmingly good, positive, #blessed.

And it has been. For the most part.

But there have definitely been hard moments, too. Difficult situations, conversations, and behaviors are going to arise when parenting. Children are fickle, and emotional, and sometimes quite unpredictable. In many ways, we all are. That fickleness and unpredictability is amplified with many children with special needs or disabilities.

Over time, I’ve grown accustomed to the outbursts, the tantrums. I’ve had to learn to adapt and to not take things personally. I’ve become very hard to embarrass in public places when Micah shouts something or behaves in ways not socially acceptable or appropriate.

I’ve been fairly open about Micah’s difficulties with controlling his emotions and coping with his anxiety. I’ve mentioned that we’ve approached helping him in every way we know how: specialized diet, behavioral therapy, medication, etc. None of this is simple. None of it is easy. Every time I do behavioral therapy with Micah I feel like I could melt into a puddle for how vulnerable I feel, how deeply I feel for Micah.

I truly never know what each day will bring with Micah. As he gets older, stronger, and bolder my own anxieties for his safety and well-being, and even his happiness, have all grown as well. I know it’s not uncommon for parents to fear for their children’s safety, it often isn’t the most rational of fears, but I do feel that the fear I have for Micah seems very reasonable.

Ever since he ran away from school in January, I have felt a bit on edge anytime I don’t have my own eyes on him. After looking up various GPS tracking devices so that we could track his whereabouts in case he decides to run away or hide again, Sarah and I decided upon an Apple Watch with cellular service. He wears it happily, even calling friends and family from it. And I can track his watch wherever it is with fairly good accuracy. That has given us the slightest peace of mind, but it’s still pretty minimal.

There are times in our own home recently when he has felt ashamed or angry or upset about something and he has hid in places in silence so that we cannot find him. Even with an entire house of people searching for him it still takes us a terrifying amount of time to find him, even if it is simply ten minutes. We’ve found him in the cabinet in the guest bathroom, behind the clothes in our walk-in closet, and in between the sofa and the wall in our living room. It’s a horribly terrifying experience each time and it sends my brain into a panic. My mind quickly begins imagining catastrophic outcomes. They don’t seem so farfetched when my son was found walking around on a half-frozen pond less than three months ago after running away from school.

We are constantly trying to figure out what is best for Micah. We try to find ways to motivate him, to reward him, to know how to give him consequences. His unpredictability makes this difficult. It challenges the attempts to be consistent with our responses. His differing reactions to what I would consider the same antecedents are puzzling. And Sarah and I are behaviorists, experts in behavior modification at this point in our lives due to our jobs and training. But Micah is a constantly changing puzzle, always keeping us on our toes. It’s exhausting. And as he gets older and stronger and more perceptive, it’s gotten a lot scarier.

After much discussion and counsel, Sarah and I enrolled Micah in a different elementary school that is able to offer a specialized classroom with an alternate curriculum for him. We did this so that he could have a more individualized education that would allow for him to learn at his own pace. He has been attending there since March 22nd. He has enjoyed the change, and has spoken very positively of his new teacher and his new friends.

I had to wake Micah up this morning in order to get him going on his day. Today was his first day back to school after our spring break this past week. On Mondays he doesn’t ride the bus to school because he starts his morning with speech therapy over Webex, and then we take him to school afterwards.

Micah rarely sleeps in. He seems to do it whenever it is least helpful, such as school days and days he needs to be ready for something like therapy. I rubbed his back to slowly try and wake him up, “Micah…hey buddy…Micah, it’s time to get up. You slept in today, sleepy boy. It’s time to get up. The girls want to see you. Why don’t you go say hello to them?”

If he happened to sleep in on a normal day, not a day in which he hasn’t seen the girls for the last ten days, he would fight getting up. He would act as if he was still asleep. But my suggestion to get up to say hello to the girls seemed to work, and he sat up, rubbed his eyes, and ran out to say good morning to each of the girls.

He did well in speech therapy, then I drove him to his new school, which he seemed excited to go to, and that was that for the morning. When he returned home this afternoon he was happy and he was eager to get his after school snack and to play outside.

And he did. He played with his brother and the two neighbor girls in our garage for quite a while. They played house and came up with all sorts of imaginative situations with each other.

Work was sporadically busy throughout the evening. We ended up having a family meeting with the girls at the end of the night, right around Micah’s bedtime. Because we were busy, Micah played with some toys and the dog crate to create a favorite game of his, which is to pretend he is a vet. Sarah had placed an order at the local grocery store for pickup, so we arranged that while she went to the store to pick up the food, I would put the kids to bed.

But when Sarah left to go to the store and I suggested it was time to start the night routine for Micah, Micah launched into a fit. He yelled that he had just started playing and that he shouldn’t have to stop. I asked for him to take his meds and to start to getting ready for bed, but he only grew in his stubbornness and was making it very clear that he was going to make this a fight. This is not very uncommon. In fact, this is the time when he is most likely to throw a fit. But tonight he seemed extra stubborn.

He refused to listen to any instructions whatsoever. I put my arms around him and gave him a big bear hug, squeezing him to help give him a sense of comfort and control. This often helps him even though he doesn’t realize it. But tonight he was not having it. He claimed I was trying to kill him by holding onto him and not letting go. He tried yelling that he couldn’t breath, even though I had only given him one hug. And then he launched into a series of intentionally hurtful statements and questions.

“Why are you trying to kill me? I hate you!”
“I will never take my meds. Why do I even have to take them?”
“You are a mean man. You are a bad dad. I hate you!”
“You are not my dad anymore!”
“Taking pills is stupid. They don’t do anything for me. I’m not going to take them.”
“I hate you. You are not a nice dad. I don’t ever want to see you ever again.”

In our job at Boys Town we are taught to stay out of the content of an argument. It only escalates a situation, gives them more things to respond to and argue with. If you don’t respond to the content of the arguments, then they will only be arguing with themselves. Eventually a kid calms down and moves on when they see that making statements like these don’t do anything. But Micah is more stubborn than even the most stubborn girls we have had.

So Sarah and I try our best to stay out of the content, but he makes it so hard. And the things he says, it’s almost like I can’t believe my own ears. This little sweet boy, the sweetest boy I’ve known, he can say some very horrible things. It’s heartbreaking and awful.

It stings. It really does. I know he doesn’t truly mean all that he says. He is not thinking rationally and he is angry and he is just trying to do whatever he can to be oppositional and get out from having to do what he doesn’t want to do. So I try to ignore the actual statements, but I do tell him that it hurts my feelings. I try to remind him that I do love him. And sometimes I do find myself asking him, “Why did you just say that to me? That is not a kind thing to say to your dad. I love you, Micah. I’m not sure why you would say such a hurtful thing to me.”

He is sophisticated in his arguments and outbursts sometimes. His brother is especially that way. But tonight he repeated something that I think he recently heard his brother say, “Use empathy, dad! Think about how I am feeling right now!”

There is no response to that statement that I have found to be helpful. It’s a master of a statement to pull me into content, though. I know that from experience.

I told Micah that if he wasn’t willing to take his meds that he would need to have a consequence, and that I didn’t want to do that, but if he continued refusing we’d have to think of some consequences that take some things away from him, such as a couple of his stuffed animals.

“I don’t care! I don’t need them. Take them. Take all of them!”

And I said, “Well, I won’t have to if you just take your meds.”

“I’m not going to take my meds. I hate you. Go away. Take all of my toys. I don’t need them anyway!”

And so I said I was going to go take two of his stuffed animals as a consequence. And so I walked to his room to grab a couple of his stuffed animal dogs, and when I came back he was gone from the room. Vanished.

My heart fluttered with fear, the beginnings of panic. I looked all over the living room. I checked the closet where he had hid before. I checked the bathrooms and the cabinets. The back door hadn’t been opened, I didn’t think, and I knew he hadn’t come into his bedroom where I had just been.

Lydia could tell I was kind of upset and couldn’t find him, and she started helping me, too. I recruited Ezra to help me find him, too. We all couldn’t find him. I called for him, but again, no response. Eventually I found him in our walk-in closet hiding behind some of Sarah’s clothes, but this time in a different part of the closet from before. When I caught him, I told him to get out, and that he had scared me very much.

He threw a fit and ran from the room back into the living room.

He continued to tell me how he hates this family, and how he hates me. That he wishes he could be in a different family.

I again asked him to take his meds so that he could go to bed, but he refused.

Eventually I thought to tell him that I could leave him alone if he just took his meds. He immediately took them. But then he refused to go to bed and once again tried saying hurtful things to me. Ezra came into the room with an old balloon from his birthday and was making all sorts of noises with it next to me. Annoyed, I snatched it from him and popped it. Ezra was immediately upset, teared up, and started crying. He ran to his room. Lydia heard him crying and went to comfort him.

Micah said, “See dad! That’s why no one likes you. No one wants you to be their dad because you are mean. Why would anyone want to be with you?”

I felt defeated.

So once again I told him that I would leave him alone if he went straight to bed, and he said “ok” and went directly to his room. I sat for a moment, and then went into his room to turn off his light to encourage him to go to sleep. Lydia had been talking with Ezra, trying to cheer him up. When I came in she picked up that I needed to try and get Micah to sleep and she got up and left the room. Ezra was still very upset with me and said he didn’t want to talk to me, much to Micah’s approval.

I asked Ezra if he would be willing to come with me so I could talk to him. He told me he didn’t want to talk. I told him I wanted to apologize, and he reached out for me to hold him and take him out of the room.

So I took Ezra to my bedroom and set him on my bed. I got down on my knees and I told him, “Ezra, I’m sorry for popping your balloon. That was not a nice thing to do. Your brother has had a rough night and I was very frustrated when you came in with the balloon. When I heard the noise I overreacted and popped it. I shouldn’t have done that, and I’m sorry. Do you forgive me?”

Before I could even finish my question he leaned forward and gave me a big hug and said he forgave me. He gave me a big kiss. I told him I loved him and thanked him for forgiving me and I reiterated that I was sorry.

In the short time that I was talking to Ezra, Micah took advantage of my lack of attention and ran out of his room and out the side door of our house. Lydia saw him, and chased him into the pine trees, trying to convince him not to run away.

He said that he didn’t want to be a part of our family, and that he wanted a different one.

This is what I mean when I say raising a kid with special needs is not just hard, it’s scary.

My mind gets flooded with all sorts of thoughts.

What if he tries this in the middle of the night?
Would he really try to do this again?
Where would he go? What would he do? What would happen to him?!

I picked him up and told him that he cannot run outside of the house. That we needed to go back inside. He argued a little bit, but not much.

We went back inside and I took him straight to his bed. I told Ezra to go to bed, too, and he listened and went directly back to his bed.

Micah was trying to tell me he didn’t want me around him. I ignored it.

As Micah was fairly quiet in bed, Ezra asked if he could pray. I told him yes, absolutely. And Ezra said the Lord’s Prayer.

As Ezra prayed, Micah was mumbling things about not wanting to be a part of this family. He mumbled things about Jesus not being real, about the Bible not being true.

When Ezra finished his prayer, I thanked him. Micah said he was going to pray, too:

“Dear Jesus, you are not real. I’m not real. None of us are real, so nothing matters. I hate you. Amen.”

I have no idea of what to think of such things. Nothing has prepared me for this. My sweet little boy saying such disturbing things.

Ezra heard what Micah had said and replied, “Micah, it sounds like you don’t even want to live!” And Micah replied, “I don’t. I hate this life.”

Chills ran down my spine.

Ezra asked me to pray for guardian angels to watch over them and keep them safe. So I did. But Micah said that angels aren’t real. That Jesus isn’t real. If he is real, he’s just a ghost and can’t stop him from doing what he wants.

These are not the sorts of things I want to be hearing from my 8.5 year old.

I tried to reassure Ezra and told Micah that I loved him and. that I needed him to go to sleep. Micah tried a few bids for me to argue with him, but I remained quiet.

I texted a couple friends for support, asked them for prayers.

I remained sitting on Micah and Ezra’s bedroom floor. Just sitting in the dark, concerned. I was emotionally hurt and overwhelmed. Confused. Why would Micah say these things? Why is this how he processes whatever anxiety or anger he is feeling? Will it get better? Will it only get worse as he gets older? I am terrified.

After about ten minutes, Micah turns to me from his bed.

“Yes, Micah?”
“Dad, I’m sorry. I don’t know why I said those mean things.”
“Oh Micah, I love you so much. Those things you said, they did hurt my feelings.”
“I know. They hurt my feelings.”
“What do you mean? They hurt your feelings?”
“Yeah, I hurt my own feelings when I said those things. I don’t know why I said them.”

I don’t know what to do in those moments. I feel a flood of relief flow over me hearing him apologize, take responsibility, but it doesn’t erase all that just happened. It doesn’t take away my fears that he might just get up in the middle of the night and try to run away somehow.

The sense of utter terror merely gets numbed by the relief that comes from his apology, but that terror doesn’t go away completely. This is just one moment right now at age 8.5. Maybe he was just overtired. Maybe he’s still adjusting to being back from vacation. Maybe he’s recalibrating after going back to school and is just emotionally exhausted. Maybe he just was pissed that he had to go to bed when he had just started playing.

I don’t know really what is truly going on in that little brain of his, but when he makes these sorts of apologies even he seems scared by his own behaviors, like he was completely out of control. And that would be scary. The fact that he seems so out of control of his own behaviors and outbursts, that just terrifies me. To see him flip the switch from saying he hates me to telling me he is sorry and that he loves me, that’s unsettling.

Parenting is hard. There’s so many joys that come with it, but man oh man if it isn’t the most difficult thing we do as humans. And parenting kids with special needs, it’s scary as hell.

Who knows what tomorrow will bring? Who knows what life will be like with him in two years? Five years? Ten years?

I’ll only find out one day at a time.

P.S – For those of you also worried, tomorrow we plan to reach out to his developmental behavioral pediatrician.

Published by Andrew

a ragamuffin dad planting some sequoias

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