How and Why

A few people have asked me how we made the decision to move forward with residential care for Jack. I guess it all seems kind of obvious to me (see: this whole blog for the last five and a half years), although maybe to people who aren’t living it, the tipping point isn’t obvious.

We always knew Jack would one day live in a group home, but we believed it would be when he was 18 years old and an adult. Most minors don’t live in residential settings. It’s less common.

As Jack’s behaviors became more difficult over the last three years, I often wondered to myself how we would possibly survive another 5, 6, 7 years until Jack turned 18 and we could make this change happen. I have lived in dread of Jack getting even bigger, taller, stronger, and fully entering the process of puberty. But we hunkered down and kept going, because there aren’t any other options when you are a parent.

In the past nine months, we have seen a steep decline in the availability of respite workers to help us with Jack. I simply didn’t have enough help. Jeff works sporadic hours, which are out of his control. He often works late into the evening, when I would be home alone with Jack and the two little boys, who, incidentally, also have autism. Henry, a teen, was usually at basketball practice or with friends.

In this setting, I was the only grown up managing all the people through the toxic witching hours, when Jack wanted all the food, all the attention, and all the rides in the car. If he didn’t get these things (and even when he did get them), he was violent and unpredictable. Many nights I texted Henry and said, “Please come home. I’m alone with Jack and the boys. He is losing it and I need help.”

And Henry, bless him, would come home.

A family member with disabilities makes people wise and compassionate beyond their years. It’s one of the perks.

The short version of the story is that for months, I was one woman caring for Jack and two other kids with autism, when the reality is that Jack requires one-on-one help at all times. If he doesn’t have the right kind of help (like a big, burley man), then truthfully he needs two people laser-focused on him. Without the right help, Jack was hurting me and his brothers at home, he was violent toward me in the car while I drove him to and from appointments, and he was destructive to property at home and school on a daily basis. And we can’t forget about Costco.

My ability to cope unraveled, and God began to point out to me that there actually was another way. I did more research into group homes. But I couldn’t comprehend turning over all care of my disabled son to other people: buying his groceries, filling his prescriptions, communicating with the school, taking him to his medical appointments. I felt it meant I was abdicating my job as his mother.

“We can’t do this,” I told Jeff.

A few weeks later, I took Jack to his psychiatrist appointment, where we discussed all the ongoing behavior problems resulting in a crisis-level home life. Dr. M said, in passing, something that went right to my heart. “When you’re ready to pursue residential care, and I sense that you’re not there yet, I will help you.”

These words were spoken casually and in the midst of a much larger conversation, and yet they plucked a chord within me. As it reverberated, the Spirit said, “Listen to her.”

But how do you change your life in such an extreme way? Answer: It has to grow so bad that you can’t continue as things currently are. Painful change is the only viable option. Every violent act, every near-catastrophe was a clear paving stone leading me to this thing that God knew Jack needed.

The promptings were subtle, as is the nature of the still, small voice.

It was hard for me to hear it amid the chaos. When I finally accepted that this decision had to be made, I made it. Then I asked God to tell me if it was the right thing. I’ve already written about how quickly Jack was approved, and the speed with which everything fell into place. After I brought up residential care with Jeff and he backed me in the decision, God took over and worked the miracles that made it happen.

At times, I am sad. I miss Jack. My family feels incomplete. My mothering muscle memory jerks, remembering the years of being on edge, always moving, always intercepting. I feel lost.

But since we decided to move forward with Jack’s group home, I have unequivocally felt that it is the right thing.

I also have not been left alone, even in this lonely, strange journey. I feel my Savior’s love both directly and through the many angel people who have reached out in many ways to ease my pain.

I believe that Jack is feeling this too, because Jesus loves him.

 

  3 comments for “How and Why

  1. Kelly
    May 28, 2017 at 3:23 pm

    A friend of mine just directed me to your blog. Our family has one on the autism spectrum, not severe but still its hard, daily. Thank you for sharing your experiences. It is such a weight to carry and knowing someone understands what is hard to describe brings a bit of a lift. I really appreciate this part of your entry: A family member with disabilities makes people wise and compassionate beyond their years. It’s one of the perks.
    We are seeing that in our other children and it is something I am grateful they get to develop even though it is hard. Thank you, thank you for sharing with such a positive attitude.

  2. Jennifer
    May 28, 2017 at 4:15 pm

    You are in my heart and thoughts and prayers, Megan. I love you!

  3. Missy Poppenger
    May 29, 2017 at 1:24 pm

    You are loved, respected and have blessed so many. And I am happy that you are continuing to express yourself through your words. Please don’t think you aren’t making an impact. You most definitely are. Take as long as you need to strengthen your self.

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