Category: April

Mama Bear Is Getting Ready To Roar!!

I’m not going to lie to you. Life has been super hard lately. Prepare for a lot of acronyms in this post. I have been fighting a battle since November with DDD (Department of Developmental Disabilities) and Magellan, the insurance company that covers behavioral health services for Jerilyn. We applied for an out-of-home placement called a RTC (residential treatment center) in November. Jerilyn’s psychiatrist suggested a TGH (therapeutic group home), which is a level below the RTC, mainly because he felt like there were a lot of kids in RTC’s who were really just delinquents, not children suffering from mental illness like Jerilyn.

FightABattleHowever, during the whole approval process with Magellan, their own doctor stated they would approve the TGH (still with me?? Therapeutic Group Home), but made a note that Jerilyn most likely would not be accepted into any because her needs are too intense. In the notes, their doctor said that a RTC would need to then be considered at that time, although likely with the same results. Yes…too intense for a TGH or RTC and the teams that works there, and they wonder why I’m struggling over here by my lonesome.

Fast forward to now and a million meetings I’ve had with our team, which includes people like her behavioral therapist, DDD Coordinator, Intensive Case Manager, Magellan representative, company doing the Functional Behavioral Analysis, the respite or habilitation company, and our Family Support Partner. We’ve had to move these to our large dining room table to fit everyone at this point!

Jerilyn is in desperate need of hospitalization again, but I’m not sure what to do. As an in-between service (“in-between” = the time it will take to get big wigs in each of the companies to develop an out-of-home placement solution) we are receiving a “wrap-around” care solution. This means behavior coaches will be coming in and out of my home daily to help with Jerilyn.

I really wish I had the freedom to write all of the things I really want to say, but I don’t, so I’ll just say pray for Jerilyn. She is in a very rough place. One of the main reasons we need to be in some type of residential care (that actually knows how to care for children like her) is because we need to undergo another med change and these can be brutal, both for her and then of course, for us.

She is in a place of asking to return to the hospital, which is a big indicator of how much help even she feels she needs. Please pray for wisdom and discernment for us. The hospital we usually go to has a SIX PAGE wait list to get in and I’ve heard that others in the area have the same right now. UGH!! Our country needs mental health reform!!!! They have thrown out the possibility of sending her out-of-state to a place more suited to her needs, which I am fine with, my main concern is getting the RIGHT placement to get her the help she needs and deserves NOW!

Next week, I will begin the process of contacting congressmen and senators in our state, trying to get them to make a call on Jerilyn’s mamabearbehalf. I’ve heard this can get things moving a little quicker. For some odd reason they don’t want the spotlight on their failures to provide adequate care for a child. :Pondering:   You don’t want to make Mama Bear mad because this Mama can fight when I need to. Having a psychopath for an ex will teach you how to not back down from a fight, if nothing else! I am fixin’ to reign down some terror if solutions don’t start appearing soon.

Let me try and at least end on a good note….Daniel is flying into town today and will be with us for a month which we so desperately need and have been looking forward to! Hopefully he brings some much needed peace in here as well. 🙂

 

Shameless Pride

Okay…this is the most belated blog ever because I’ve been meaning to post this since Christmas. My sweet 11 year old daughter, Ainsley, couldn’t go to sleep on Christmas Eve (no surprises there). The reason for my shameless pride though is because of what she chose to do with her sleepless night. The next day she told me she read the whole book of Luke and wrote the following prayer for Christmas day:

Dear Father God, creator of all and maker of Heavens we give our thanks to you. Because when we the sinner sinned your heart broke but you didn’t stop loving us so you gave the most wonderful thing one day. Your son. So your son washed our hearts in the blood of the lamb so we could live eternally forever with you. So your son deserves all the presents but he doesn’t accept something made on the outside, he wants something made on the inside so we lift our hearts up to you Lord, Amen.

That’s my Girl!!

(I had to post this so I will never forget it.)

Ainsleys Prayer

 

Renovation Time

 

BedroomA

Daniel was able to be here for a good portion of the last two months and we couldn’t be happier to have him here with us. I had him busy with my many Pinterest projects. First I had him tackle our bedroom renovation. I had already changed the paint color to a blue-grey. Honestly, I was going for a grey grey, but gosh darnit if blue tones didn’t come out. Oh well, still much better than the yellow it was before.

Daniel came in and helped with the headboard idea I stole off of Pinterest. I chose the boards and stained them and then he hung them up for me. Don’t they look great! Really affordable too!

BedroomB

Then we took an old wall mirror and framed it out to match the headboard. Love it! This one took a little more Daniel expertise to actually put the frame together, but the results are outstanding.

To finish off the new look, Daniel also made me the cornice board for the window I dreamed up in my head. Balances everything. Now I just need to find some good curtains to add some color.

With the bedroom looking all nice now, we moved on to the bathroom. I took the whitewashed maple cabinets that were screaming for an update and used Cabinet Transformations to take them from blah to beautiful black. I inlaid bead board before I painted and they turned out wonderful, if I do say so myself. I have to give credit were credit is due though, since I totally swiped the idea off of…..you guessed it….Pinterest.

BedroomC

Here is one of the blogs I read to figure out how to do it.

Daniel then designed and framed out the bathroom mirror, adding his own personal touch to the top where we inlaid more bead board. Add a new light fixture and a ladder to hold towels (super great Hobby Lobby find) and viola!

I’ve already done another set of bathroom cabinets and I am debating redoing all the kitchen cabinets. We’ll see if I take on that huge challenge.

So what do you think??

BedroomD

 

 

 

 

 

 

Still Waiting…

keep-calm-and-still-waiting-18The last time I wrote, we hadn’t heard back from the third and final, therapeutic group home for Jerilyn the insurance company had approved. Well, we did. They wouldn’t take her. They said they didn’t think she would fit in well with the current group of girls already there. Three strikes.

Now what? We are still in desperate need of an out-of-home placement for her. Her Intensive Case Manager called for an emergency Child-Family-Team (CFT) meeting but then she forgot to put it on her calendar and didn’t show. I guess the “emergency” wasn’t emergent enough. Also, just found out some other vital information she never relayed which would have helped with another placement. Needless to say, we now have a new Intensive Case Manager.

They are now discussing higher level facilities and have even thrown out the option of an out-of-state placement because they are struggling to find a place that can meet Jerilyn’s high level of needs. When an area with four million people like Phoenix can’t find a place willing to take on the Jerilyn challenge, you start to doubt whether anyone will step up to the plate. Okay…enough negative thoughts…let’s turn it around….God has somewhere specific in mind for this special child of His and he will move mountains (or have her get in a plane and fly over all the mountains surrounding this desert valley) to get her there. Right??

Please continue to pray for the right solution for our family. Jerilyn flat out refused to get on the bus parked in front of our house for school on Tuesday and it’s not like you can pick up a 5’3″, 110 pound child and put her on it. She’s grounded to her room all week and all electronics are prohibited. It’s hard to make any consequence stick well enough for her to learn a lesson, but I’m hoping.

We have had a lot of other crazy chaos going on around here the last few weeks, so I am making a promise right now to update you more by Monday. (I’m trying to build in my own accountability.)  :Geek-Girl:

Downward Spiral

I haven’t written in a long while. Life has been rough the last couple months and I admit I found myself in a downward spiral. It started with a scheduled court date in mid-October to address child support and the many areas my ex was currently in contempt of, which basically means things he was required to do by the court, but just wasn’t. I was looking forward to getting in front of our judge but he forced us to mediate first. After false promises and misleading information, my ex and I came to an “agreement” which negated our need to go to court. Of course, once I gave up our court date, my ex refused to follow through on our mediated agreement.

Within hours of arriving back from Florida and my failed court attempt, I found myself in the emergency room of Children’s Hospital with Jerilyn. She needed to be admitted again to the bio-behavioral unit.

After about twelve hours in a tiny room with Jerilyn raging and on a one-to-one nurse watch, a bed opened up for her. Apparently one had opened up about six hours earlier, but they “forgot” to tell us. Oh joy. The stress of that day pushed me over the emotional ledge I was only barely hanging on to.

A lot of people ask me how I keep going with all of the challenges we constantly face. I usually say I take it one day, one moment, at a time. However, sometimes I get an overwhelming sense that I can’t keep doing it.

I felt depression pulling me down…down…down. I’ve dealt with episodes of depression a couple of times before when life’s circumstances were overwhelming. This time was one of the most difficult to bounce back from though. I had a hard time getting out of bed, talking to anyone, even eating.

Jerilyn stayed in the hospital for about ten days. During that time, our respite worker quit. Great day. (Read that sarcastically.)  A respite worker is basically a one-on-one helper for Jerilyn. We can’t seem to hold on to a respite care worker. Ugh!

Within two weeks of Jerilyn being released from the hospital, I was at the end of my abilities. They had adjusted her meds, but stability was still not achieved. Every day was extremely difficult. I finally broke down and had to admit to myself that we needed more help. I called her Intensive Case Manager and told her through sobs we needed to talk about out-of-home placements.

I felt like a broken woman. A broken mother.  A failure.

We started the process for a temporary out-of-home placement. It’s been a few weeks now and we did receive approval from the insurance company, which was a big hurdle. Now we are trying to see if there is actually a therapeutic group home which will work for her. Apparently there are three in the area. One already bowed out. The second one has a two month wait list. The third, and final one, interviewed Jerilyn and I yesterday and we will hear back by the end of the week about whether they will accept her.

My prayer had been that God would show us just the right home for her and close the other doors. I am hoping that since only one group home is still in the running…it is the one God wants her in.

Some of you may be wondering how Jerilyn is taking the news of the temporary move. Eagerly is the best description. The same way she looks at going to a hospital. She knows she needs more help than we can possibly give her, and I think she sees it as an adventure of sorts. A chance to meet other kids she can relate to. At least, that is my best guess.

Please continue to pray for us. This is only a snippet of the real life drama we are living every day over here. I could fill up a book with the more detailed version….oh wait…I am. Stay tuned.  🙂

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!

A Time To Be Born

(Excerpt from my book)

A TIME TO BE BORN

Birth Day

On September 5, 2004 I was nine months pregnant and Hurricane Frances was sweeping across the state of Florida, heading straight towards Tampa, and us. As luck would have it, the barometric pressure dropped enough to put my overdue body into labor. My husband and I got in the car and headed to the hospital. Oh wait. We weren’t going to a hospital; we were going to a “birth center.” A birth center can sound like a great plan when you are not in labor and can still envision a perfect birth. However, when facing a hurricane with 145 mph winds, my birth center looked like a little house, surrounded by WAY too many trees.

We drove through the wind and rain, carefully navigating the already fallen trees to get there. Once we arrived, labor was in full force and there was no other option but to just push through. (Pun intended, of course.) In my defense, I chose a natural birth with my first daughter and I assumed this second one would be just as wonderful of an experience. Never assume anything. First off, this time it hurt….worse. All I kept thinking was “Get me that epidural,” only I didn’t have access to an epidural at a birth center with a midwife.

No water. No electricity. Definitely no epidural. And finally, no going to any hospital since roads were blocked and I’m pretty sure the ambulances were otherwise engaged. Then, as the eye of the hurricane was passing over us and the distinct stillness of the winds saturated our senses, Daisy Marie entered our world. The traumatic experience wasn’t over yet though because she was all blue and not breathing.  My world truly did stop spinning as I waited the longest moments of my life, for her to breathe. Finally, her beautiful cry erupted. Daisy was here, all 9.1 pounds of her. Yes…ouch.

We all enter into this world after hanging out in a womb until it is our time to be born. For some, like Daisy, the birth is filled with drama. For others, like my best friend Misty, it means coming early, as a tiny four-pounder resembling a drowned rat. Her words, not mine. However, every birth experience is unique and life changing.

We obviously don’t choose how or when we come into this world, but we were chosen to come. God chose each of us specifically.  It is a relief to know none of us are accidents, at least not in God’s eyes, although our parents may have a totally different take on this.

Spiritual Birth Day

Although we may not have a lot of say in how and when we are physically born into this world, we do get to determine if we are reborn.

3 Jesus replied, “I tell you the truth, unless you are born again,you cannot see the Kingdom of God.”4 “What do you mean?” exclaimed Nicodemus. “How can an old man go back into his mother’s womb and be born again?”  5 Jesus replied, “I assure you, no one can enter the Kingdom of God without being born of water and the Spirit. 6 Humans can reproduce only human life, but the Holy Spirit gives birth to spiritual life. 7 So don’t be surprised when I say, ‘You must be born again.’ (John 3: 3-7, NLT)

We experience the joy and privilege of being born again once we choose to start our life with our awesome heavenly Father. Interestingly, just as men pursue women, which can result in a physical birth, our heavenly Father pursues us, which leads to our spiritual birth.

Although I don’t remember my physical birth and I don’t think I’m alone in this, I could never forget my spiritual Birth Day. I was a little lady of six. First off, don’t let anyone tell you a small child cannot make an eternal decision. God’s timing is all that matters, not the limitations and qualifiers we are sometimes guilty of placing on people.

I remember telling my parents I was ready to make a decision for Christ and I wanted to walk down the aisle in church on Sunday. When Sunday came around, I could hardly wait until the end of the sermon and as soon as they started the weekly invitational hymn I popped out of the pew and headed down to the front. I sat there with my pastor and prayed. I immediately felt a huge weight being lifted off my shoulders and thrown as far as the East is from the West! I felt light and free. Even at six I was amazed because I couldn’t remember ever feeling that weight until, all of a sudden, it was gone.

I will NEVER forget that moment. You know what I love most about it? It is the fact I never, ever question whether I was saved. It’s as clear to me as the fact that the sun will rise tomorrow. I know not everyone has the kind of salvation experience that leaves no doubt, but God our Father wants us to be confident of our salvation. If you aren’t confident, seek Him and lay those fears down once and for all.

(more…)

My Book

I mentioned earlier in this blog that I was working on writing a book. I’ve decided to start posting excerpts of it. I would love your feedback!

First, let me tell you how I arrived at this point. Have you ever felt certain of a future event in your life? You know…getting married one day, having children, or working in a specific field? I think we all have. Well, I just knew one day I was going to write a book. I knew this even before I really had lived the life and learning experiences God wanted me to write about, all in the hope of encouraging others.

Earlier this year, I started praying seriously about my writing. In my prayers, I shared my heart and my desire with God to get started, but also the fact that I didn’t have the structure ironed out and I desperately needed God for that. I think my prayer went like this…

“God my heart is willing, but you know my weaknesses. I don’t know how to structure it, so I need you to structure it for me. Help organize my thoughts. Please, Lord!”

It was only a few days later while I was reading Ecclesiastes that I felt God speak to me. I was in Ecclesiastes 3, which is the “A Time To Be” chapter. You know….a time to be born, a time to die, etc. After reading it through the first time,  I felt the Holy Spirit tell me to read it again. I did. Again, I felt the prompting of the Spirit to read it once more…slower. Once I did, ideas started popping with each “A time to be.” For instance, when I read “a time to be born,” my mind started popping with different interpretations…physical birth, spiritual birth, the birth of a dream.  I knew God had answered my prayer. I was to use each “A time to be” as a chapter! Structure….Done. God is so good to me!!

I’m excited to share what God has laid on my heart to write. My prayer is that my readers are able to laugh, be encouraged, and not feel so alone in their struggles. God’s Word says it best…

“He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” 2 Cor 1:4

I want to live that verse out. Let me know what you think as I share. Please leave comments, so I can grasp if I am heading in the right direction. 🙂

Much Love,

April

Girls Night Turned ER Night

Last night was supposed to be a semi-relaxing night with a couple of my girlfriends at one of their houses. I say semi only because we still had all of our little girls. Their husbands took all the boys out to a movie and we were having a girl’s night in-house.

While we were out on the back porch sipping our wine, our daughters were all in the front room dancing up a storm. Then we heard a bloodcurdling scream. Ainsley was hurt. She had fallen and hit her back on the coffee table. What made this different from a normal fall was that she was unable to feel anything from her waist down.

After trying for several minutes to test for any feeling at all and getting no response, my friend Tammy called 911. Ainsley was terrified. She began screaming that she didn’t want to be paralyzed. I was doing my best to stay calm and keep her from losing it by telling her everything would be all right. The ambulance was on its way and they could help her.

Once the ambulance arrived I backed up so EMT’s could assess her. They were running tests, looking to see if her legs responded. They poked and prodded, but got no response. They put her on a backboard and started strapping her down. I laid my hands on her head and prayed for complete healing. Then I heard them radio in that they were bringing a level one trauma into the Children’s Hospital and that was when I started to shake.

Ainsley’s anxiety was continuing to increase as they immobilized her and she began thrashing around when they tried to start an IV. This was actually the first sign of good news because we saw some movement below her waist. They loaded her into the ambulance and I had to get in the front seat so two of the EMT’s could ride back there with her.

She was screaming as they were putting in the IV, in case you can’t guess, she hates needles. She calmed down after they finished. Personally, at this point, I am still on autopilot. I have this ability, or liability, considering how you look at it, to shut down my emotions to deal with a crisis and this skill definitely kicked in. I prayed.

Once we arrived at the hospital, they wheeled her into the trauma room and start cutting off her clothes and asking her questions. She tells them she has a little feeling above her knee, but still can’t feel anything below it. I see them do the reflex test on her knees with absolutely no response. They are running sharp tools along the bottom of her feet, again, nothing. The doctor asks her to wiggle her toes. They keep asking and she responds in a panicky voice… “Are they moving? Are they moving?” They weren’t.

All of this felt surreal. As if I was watching this happen to someone else. Except I wasn’t. My daughter was the one lying there on the table surrounded by two doctors, three nurses, and few others. I felt a peace though that everything would be all right. I stood by her, watched and prayed.

One of the doctors down by her feet continued to prod and pinch her legs looking for any response. Finally, she said she felt something. He had been literally taking sections of the skin on her leg, pinching and turning it, which typically would have hurt. Once she said she felt something it was a huge relief. She described it as very light, but within a few more minutes she could move her toes again. Praise God!!!

With the main concern of paralysis gone, we were given a room while they set up a CT for her to see if there was a fracture. After about an hour the doctors came back. They had spoken with a neurologist and needed to see if she could walk, which would determine whether she needed a CT or an MRI. With their support she could stand, but was still unable to walk. Now an MRI crew would have to be called in.

At least another hour slips by as we wait for them to arrive. I start to get a little concerned when I remember that Ainsley’s father has a degenerative back condition. He has had a back surgery, as has his sister, and their father. I’m hoping Ainsley hasn’t inherited this. Transport comes in to take her for the MRI. I sat in the room with her while she does the test, which is about 30 minutes.

Thankfully, they got the results back to us fairly quickly and it is all good news. Nothing broken. They tell us she had a spinal concussion. These are rare but we could expect a full, quick recovery. A little while later she was able to walk out of the hospital, very gingerly. She had to take it easy today, ice it and rest. She should be good as new in the next day or so. Again….Praise God!

This experience has taught me once again that we are not promised tomorrow will look the same as today. The unlikely or unimaginable can actually happen with no warning. Every day is a gift.

Broke Down and Dressed Up

Get ready for an “April” story. Daniel was flying into Arizona late on Thursday night. Being the nice wife that I am, I decided to put a sexy dress on to pick him up from the airport. His flight, which was supposed to arrive at 11:45pm, ends up landing about a half hour early.

Daniel was flying over so he could drive with me back to Florida for the summer. Our plan was to leave fairly early the next morning. I was busy packing up my van all day and I wasn’t finished yet, so I decided to borrow my parents Mercedes when he arrived.

I was on the freeway, halfway there, when the car starts slowing down and begins shaking. By the time I get off to the shoulder, I know something is definitely wrong and I smell something burning.  Now, rewind about two hours to when I was in my kitchen talking to my neighbor, Tammy. We were talking about the drive across the country:

Me: “I prefer driving at night.”

Tammy:” Don’t you get scared driving at night?”

Me: “No. What would I be scared of?”

Tammy: “Getting a flat tire.”

Me: “Why would I be scared of that? I’ve never had a flat tire.”

Tammy: “Knock on wood.” (She knocks on the corian counter…I blame all the rest of the events on the fact that she didn’t actually knock on wood. LOL)

I end up with a flat tire…near midnight…in my sexy dress…on the freeway. Instead of picking up my husband who I haven’t seen in over a month, I’m stuck in my car on the side of the road. Goodness knows, I’m not going to try flagging down someone in my hooker-ish dress.

My brother ends up coming to my rescue and my dad calls AAA to have them come out. I pick up Daniel using my brothers car and bring him to the Mercedes so he and my brother can change the tire. As soon as they finish, the tow truck arrives and the guy, after giving me a once over, tells the guys thanks for stopping to help.

Lesson learned: Don’t ever mention that you’ve never had a flat before, God most definitely has a sense of humor.