Tag: autism

Prayers Made The Difference

PrayerWarriors-goldThank you to all our prayer warriors out there! As many of you know from my Facebook posts…we did finally make it into a behavioral health facility after 33 hours of waiting.

Allow me to describe the process for you who (hopefully) will never have to experience it. Once you check in to an ER, the doctor sees the patient and makes a determination if the patient is in need of hospitalization. Once the doctor determines that he/she is, you wait and wait and wait until the social worker comes to ask you all the same questions the doctor did. It then becomes the social worker’s job to find a bed available for the patient in either the current hospital or hopefully one in the area. They leave to make calls and then you wait, and wait, and wait for hours to find out whether they have landed a bed for you. There are horror stories of people being in these small ER rooms for days and days while they wait.

Often, the social worker comes back to tell you there aren’t any available beds because it seems that there is a very elaborate algorithm in order to determine if a unit can take another patient. Gender is important. Age is also a factor, a facility may have a bed available for a 16 year old, but not a 13 year old. Then, for us, it is always the added necessity of a one-on-one aid. Jerilyn usually needs one and this requires more staffing, and sometimes they just can’t find staff for it.

We lost beds this go around after I thought we had them once because she was a female and there were only male beds available and a second time because she needed one-on-one support. It’s so disheartening once you think you have a bed, only to lose it. After waiting a few hours with no response from the social worker this time, I had an aha moment when I realized I could start making these calls and lobbying (literally) to get Jerilyn to the top of the waiting list of as many places as possible.

I was actually told by one facility that it was good I was calling…it makes a difference when a parent was calling. I told him, “Well, Adam, prepare to be my new best friend, because I will be calling often today.” Thankfully, he responded with “I look forward to your call.”  The sad part was realizing a lot of the kiddos who need desperate help are actually just dropped off in the ER with no one to make those calls on their behalf. They sit and wait alone, getting pushed to the bottom of the list, because no one cares enough to make them a priority.

Guess which facility we got into? The one where my new best friend, Adam, worked. I happened to call again just as a bed was opening up for, you guessed it, a 13 year old girl….praise God!!

God inhabits the prayers of his people and so many of you were praying for us. I am so utterly thankful and truly feel prayer is what made the difference.

We also had another CFT (Child Family Team) meeting yesterday. Sixteen participants. Multiple service providers and people involved in coordinating care for Jerilyn. Sixteen is a very large group and that alone shows the intensity of Jerilyn’s case. The blessing was that everyone seemed to be on the same page, understanding of the turmoil Jerilyn is in and ready to start agreeing on solutions. Before this meeting, it seemed that most agencies were avoiding responsibility and busy trying to push off the problems to another agency.

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We will see if this new understanding holds true once we get closer to Jerilyn’s release from the hospitalization. At this junction, they are expecting her to be in for about three weeks to stabilize her meds.

Obviously, we still need your prayers. Ainsley, Daisy and I have all been sick over the last week. Daisy has been home with her asthmagiving her trouble since Monday afternoon. When it rains, it pours….and sometimes it feels like the best we get around here are the days when it only sprinkles! I’ve decided to look for the rainbow. The beauty of a rainbow is revealed even while it is still sprinkling. Keep praying for Jerilyn!! Our God is a God of miracles and I plan to keep asking for them.

Love you all. Blessings to you!!

Readmitted

So, let’s just go over the last week. A week ago tonight Misty was still here on her visit. Seems like much longer than a week ago, but this is what the calendar actually tells me. A week ago we were sitting in the family room around midnight talking about how we should go to bed since we had to get up to leave for the airport at 5:00am. Then I hear a crash and my mom screaming at me to come in the other room. Daisy had sleepwalked out of bed and slipped on the tile, busting open her chin.

Instead of going to sleep, I end up taking her to the emergency room where she gets four stiches. By the time I get back home it is now close to 3:30am and I probably don’t actually make it to sleep until close to 4:00am. A whole hour of sleep before I am waking up again to take Misty to the airport and Ainsley to school, because of course, she had a field trip that day where they had to be at school by 5:30am. I swear….never a dull moment around here!

Later that afternoon Jerilyn goes missing. For those of you who know my daughter, I’m sure it is no shock that she was wandering around outside of the boundaries I had set for her. However, this time, there was no finding her. After over an hour of us looking she reappears. She won’t tell me where she was or what she was doing. Of course, we reemphasize why disappearing is dangerous and why it worries us.

I straight up told her that if someone had taken you…in an hour, you could be out of Phoenix. By the time, the cops would be called and they would start looking for you, you could be out of the state. “Doesn’t that scare you?” Her answer is “No.” Well, of course it is no, one of the more difficult things for autistic children to grasp is stranger danger.

Anyways, three days in a row of her disappearing for long stretches of time, and I start running out of ideas. If my eyes aren’t on her constantly, she can give me the slip. When I found her on Saturday I told her that I didn’t know what to do to keep her safe. I told her we may have to go back to the hospital. She immediately began begging me to take her in. Saying she had wanted to go for a few weeks.

Honestly, this is when I know that I know that Jerilyn has needs bigger than what she can handle on her own and what I can help her through. When your child WANTS to be an inpatient, you know that they are crying out for help. She came home, went straight upstairs, packed her bag and came down with a lightness in her step I hadn’t seen in a while.

I honestly still hadn’t come to terms with whether I was taking her in or not, I was trying to process it. It’s such an emotionally hard decision to make. Unfortunately, Daniel is in Florida right now and logistically it can also be difficult to have her in, because I want to be able to visit her but the other girls wouldn’t be able to come. A visit ends up taking 2 – 3 hours out of the day. Anyway…these are the thoughts going through my head.

Thankfully, my mom who was scheduled to go back to California on Sunday night offered to stay the next couple weeks, which would make it easier to manage. I decided to call the hospital. I was told there was a four-page waitlist…FOUR PAGES! There is really only one other hospital in town that can take in children, so on Sunday we made our way over there to go through the ER and see if there was a bed available.

After an ER doc heard what had been going on (BTW – her running off was not the only thing going on that would qualify her for admittance) he agreed that she needed to be admitted, but they didn’t give me the feeling they actually had space for her there. While waiting in the room, St. Luke’s Behavioral Health Hospital called me and told me that they were holding a bed for her. This was the hospital that Jerilyn was in last time and they are familiar with her history. They managed to figure out a way for her to jump the end of the four-page list to the top and secure a spot for her. Praise God!

So, a mere 10 hours after arriving at the first hospital that day, she was finally admitted. Yes…that’s sarcasm. 🙂  For now, she is happy to be there. They are going to readjust her meds and hopefully we will see an end to some of the behaviors that are putting her in danger. She will also get around-the-clock care and therapy, which I’m hoping help heal the broken pieces no one but God understands.

Keep us in your prayers. Bipolar is not a kind or gentle illness and I want the best quality of life for Jerilyn and our family.