Tag: Special Needs

Still Hospitalized

Jerilyn is still inpatient at the behavioral health hospital. Today makes three weeks. There are a lot of agencies and people involved in her care, and I’m encouraged to know they are sending representatives out to check in on Jerilyn. The inpatient psychiatrist decided after the first week, and after taking Jerilyn off all of her meds, that he was then going to release her.

You may interpret this as good news. It was not. His very limited view of Jerilyn consisted of two meetings with her, one in which shePsychiatry_tag_cloud.svg refused to even speak to him. His future outlook for us was bleak, stating she would be in and out of psychosis throughout her life and that we would need to accept she would require 24-hour care.

It is extremely frustrating to me that a psychiatrist can have such an arrogant attitude when he has had such limited interaction with a patient. Not all psychiatrists are like this, but those who aren’t, are in the minority, at least in my experience.

Once he told me they were releasing her without any med to regulate her mood disorder, I made a couple calls and apparently all the different agencies, including DDD and Magellan, came down hard on the hospital. All of a sudden, they stopped talking about releasing her and instead we got approved to start a new medicine.

The thing about Jerilyn is when she is in a new environment she has a “honeymoon” period where her behaviors are better than normal and she stays fairly compliant. Unless a hospital is willing to wait it out, they won’t see what we see regularly. After two weeks in, the “honeymoon” was over and she became non-compliant, refused to take meds, and ended up having a major meltdown where she kicked a few holes in their walls. Yep. Honeymoon over. Reality has hit.

We have another big CFT meeting on Tuesday that will be held at the hospital itself. Jerilyn has been approved for a RTC (Residential Treatment Center) by Magellan and this next week will probably consist of meeting with any of the four RTC’s in the area willing to consider taking on Jerilyn. I’ve been told, by others involved, the likelihood of any of them accepting Jerilyn is very slim, based on her high level of need. If this turns out to be true, we may be looking at out-of-state options.

Although Jerilyn has said once or twice that she wants to come home, she most often is saying she wants to live in a hospital. I struggle to understand why anyone would want to live in a hospital but my best guess for Jerilyn is it is where she feels safe. She needs the intense structure a hospital with a constant 24 hour rotating staff can provide. Also, the “real world” has a ton of moving components all the time, which can be tough for anyone to handle, but Jerilyn’s capabilities are limited and there are too many uncontrollable factors out here. Those uncontrollable factors such as a

rainy day,

sisters who aren’t perfect,

the need to wait her turn, or

the desire to be treated like a teenager even though she is mentally and emotionally a small child still.

            Either myself, or my sister, Kim, have been visiting with Jerilyn at least every other day. It’s challenging since this hospital won’t allow anyone under 13 to visit, or even sit in the waiting room, which means that I have to have someone here watching Ainsley and Daisy so I can go see Jerilyn. Visiting hours are only from 6:30 – 7:30 pm, but with travel time it takes about two hours. Both my brother and sister have dogs/cats so I can’t drop Daisy off there. Sometimes, I really wish I was still in Florida with my awesome supportive friends I could always count on. I feel like an island out here in Arizona. Ironic isn’t it….I actually lived in Fleming Island, Florida….but this Arizona desert is my island since I so often feel alone. I especially want to get out there to see Jerilyn as frequently as I can since we don’t know if the next chapter for us includes an out-of-state placement.

I’m going to ask you to please keep praying for the right placement for Jerilyn. One that can handle both her physical and behavioral health issues with love and compassion.

My Gideon Experience

 

As many of my Facebook friends know, I have been asking for prayer regarding Jerilyn’s schooling for the last couple months. On the first day of school this year her school initiated a psycho-educational, which is a fancy way of saying a TON of tests to determine her current levels of functioning and her special education eligibility. I felt the school was initiating this because they no longer felt Jerilyn was in the correct program. She has been in a high functioning autism program for two and a half years and is currently in sixth grade.

I took some initiative and went to visit a few schools, since I had the impression they would be looking at a new placement for Jerilyn. One of the schools, The Austin Center for Exceptional Students (ACES), was recommended by her behavioral therapist but was a private school option.

After taking a tour of ACES, I couldn’t imagine a better place for Jerilyn. For one, they didn’t blink an eye when I laid out her diagnosis on the table: autism, bipolar, low intellectual functioning. This alone is impressive because it tends to scare off the weak at heart. 🙂   Another appealing aspect of this school was its incorporation of animal therapy, not only within the classroom setting, but with actual stables next to the play yard filled with horses, pigs, chickens, goats, ect… which children can visit during their recesses and lunch. If you know Jerilyn, you know this would be her dream situation. Time with animals would be an excellent motivator for her.

I knew it would be an uphill battle to get the district to agree to send her to ACES because it would be out of their pocket at an estimated $20,000-$25,000 a year. The district held a meeting specifically to discuss Jerilyn and different placement options. They came back asking that I go view a few programs they had at the junior high level. Junior High for Jerilyn….early….I couldn’t imagine it being a good fit, but I was willing to keep an open mind.

Although Jerilyn will be thirteen in January, her age is deceiving because she functions on a much lower level. I think we all remember the hell junior high was as we attempted to navigate the social waters. Imagine doing that without appropriate understanding of social skills.

After viewing the different programs, it was pretty obvious that no ONE program was equipped to deal with all the complexities of Jerilyn’s needs. Fast forward to our meeting today. I had between five and six support people coming for “our” side, knowing the district would have another five or six as well. It was going to be a crowd. I was viewing this as one of our most important meetings ever because placement was on the table.

For those of us with special needs students, we understand these meetings don’t always go in our direction. It can feel like a tug of war. The school is advocating for as many of the district dollars to stay within their purse. The parent is advocating for their child’s best interests. This is not to imply that the schools don’t want a successful solution for your child, it’s just that they have to weigh the costs and that agreement on the “best solution” can be difficult at times.

I planned on having a whole team there to advocate for Jerilyn; her behavioral therapist, DDD specialists, education specialists, and her intensive case manager. They all started cancelling on me late Friday night and when I walked in this morning, only one of my “team” was able to attend.

I was so discouraged and began second-guessing my decision to forgo hiring a formal advocate to come with me. I literally teared up in the first 10 minutes of the meeting. I felt defeated and we had only just begun.

I’m not prone to succumbing to a defeat, I am a fighter, but I felt like I didn’t have any fight in me this morning, exactly when I was going to need it. As the school went over their results from all their testing they kept using terms which made me feel like they were going to attempt to leave her in the current program and try to incorporate in some new supports.

Then the discussion changed from test results to placement options. Her school psychologist led me in explaining to the district representative my thoughts on all of the programs/schools I visited. Then she opened up the door for me to tell them why I felt ACES was the best fit for Jerilyn. Although the district rep had a few more questions and an additional placement suggestion, she eventually agreed that ACES was a good option for Jerilyn.

We still need final approval from the Director of Special Needs who is on vacation for the next couple days, but no one thought that would be a roadblock.  So…it looks like we are good to go! Jerilyn will be heading to a new school in the next couple weeks where I hope and pray she is able blossom and learn in ways she never dreamed possible.

If you wonder why I titled this post “My Gideon Experience” take a few minutes and read his story here.

The takeaway for me today was that God didn’t need a “team” of people to fight the battle. He took me at my weakest, so even I couldn’t steal any of His glory. He does deserve ALL the glory. He moved mountains today for my child. Praise be to God forever and ever, Amen!