When You Just Don’t Know What To Do

If you’ve been following my blog then you know that my life is full of normal family issues, plus the added not-so-normal issues that come with having a child with mental illness. I love my daughter, I wish I could help her more, I wish she didn’t have to struggle they way she does sometimes, but mostly I wish she didn’t have a mental illness.

Most well-adjust people realize that when you become a parent, there is a sudden switch turned on in your brain to love, protect, & provide for your child. It’s primal, innate, and you can’t ignore it. It’s what tells you whether a crying baby is hungry or tired, needs a diaper change or has a gas bubble. It never goes away, it just adjusts to your child’s changing needs as they get older. Most people do anything in their power to make sure they are the best parent they can be and ensure their child is prepared to become an adult. It’s your job to “Train up a child in the way he should go; even when he is old he will not depart from it” (Proverbs 22:6, ESV).

When you have a child with a fairly severe form of mental illness, you can do all the right things and still end up feeling like you’re failing. Some days, you just don’t know what to do. Take all the parenting books, advice from friends and family, and even some of the suggestions of doctors and toss it out the window. None of it will apply. You have to research and ask questions and advocate and get familiar with trial and error and make your own plan. In my case, you have to tell 3 different doctors that they’re wrong and keep looking for answers, get the right testing, get the right diagnosis- only to realize that things have gotten so bad that you have to have your child admitted to the state mental health hospital because everything you’ve done on an outpatient level isn’t effective. You know that despite your best efforts nothing outside of intensive inpatient treatment will benefit your 13 year-old daughter at that moment. So you make the hardest decision of your life and send her 80 miles away because you can’t help her anymore, you can’t protect her from herself, and you can’t provide what she needs.

Six months go by and great progress has been made. It’s like having a new child- literally 180* turn around. She’s happy, she’s smiling, cooperative, insightful, kind, loving, and has gained knowledge about herself. She has learned a bag full of “tricks” to be able to function outside the hospital. She gets to come home EXACTLY six months after her admission. As a parent you’re just so thankful to have her home, to have some sense of normalcy, and to have her feel better. Things are great and everyone is getting along and life is feeling right for the first time in a long time. Then the honeymoon ends.

Everyone has good days and bad days, and if they don’t they’re not normal. But recently I’m starting to realize that we’re (as a family) back to walking on eggshells and worrying about how to phrase even the simplest of words. The ups and downs have been more frequent and the bad days are starting to resemble life before hospitalization. I can tell when she’s letting her illness take over and speak for her and when she’s being a typical 14 year-old kid- most of the time. Then there are days when I just don’t know what to do anymore. I feel like maybe I’m dropping the ball somewhere, maybe I’m expecting to much, maybe I’m not expecting enough, or maybe her illness is evolving.

There are no easy answer when dealing with mental illness, especially when it comes to children and adolescents. Even more when it’s your child. I wish I could take it all away from her. She puts on a face of fearlessness and bravery, but she’s fragile and can be easily broken. I’ve cried so many tears over the last 18 months I don’t think I have any left, even when a good cry would really be nice. I worry about her future. I worry if she’ll be able to “adult” normally. I worry what will happen when I can’t make sure she takes her meds everyday or that she’s taking care of herself appropriately. Even when she makes me angry or upset because she’s said or done something to intentionally upset her sisters or mouths off to my husband, I keep telling myself silently that it’s going to be o.k. I remind myself that she can be kind and caring, compassionate and tender, my child yet a stranger.

I’ll never give up. I’ll always be pushing for more resources, more education, more awareness, and more strength. I’ll, WE, will get through the changes and the bad days. We’ll continue to celebrate small victories and learn from our setbacks. I’ll remember that this is my purpose her one earth. We’ll see the blessing in anything and everything, even the things that seem like they may break us.

I’m trying harder to “Let go, and let God”. I know that whatever I cannot handle only makes my trust in Him stronger and my faith even fuller. Even when I just don’t know what to do, He does.

“For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.”- Jeremiah 29:11

What Nobody Tells You About Mental Illness

When you realize that somebody you love has a mental illness, your world very quickly turns upside down and inside out. You find yourself researching, reading, educating, and teaching yourself everything you can in order to be the best caretaker or support system you can. There’s doctor appointments, re-learning how to be a parent/spouse/friend, managing school or work, running your household, trying to maintain some sense of normalcy, and attempting to find time to rest.

What you’re not told about is the effects that ripple through the life you were previously living. Before I get much further, here are some statistics to help the context of this post:

Now with this information out there, here’s what nobody tells you about mental illness. Living with or caring for a person with a mental illness takes a toll on every fiber of your being. Physically, emotionally, mentally, spiritually, and in every other quantifiable way you can imagine. Respite is available, where your child can spend a day or weekend with a family or organization in order to give parents and caretakers a break. However, it takes a letter from Congress and an act of God to qualify for any services like that. If you’re a middle-class family, you may as well forget about getting any assistance that you will undoubtedly need. Access to mental health care is still the least available form of health care in the nation.

It puts an indescribable amount of strain on your marriage, as mentioned above, but even more so when you are in a blended family where there is a step-parent or step-children involved. You fight over how to parent your child, what the right treatment options are, how much time is dedicated to caring for your child, and who is best equipped to take on the various challenges that come up. Sometimes you and your spouse will even argue about if the behavior of your child is a result of their mental health disorder, their stage in development, or if they are just being manipulative. There may or not be occasions where you tell your spouse to “Stop, this isn’t helping”, “Why won’t you hear what I am telling you?”, or “I will deal with it by myself”.

If a married couple can’t be on the same page regarding the numerous variables in caring for a child with a mental health disorder the results can be unbearable and irreparable. Resentment, depression, avoiding each other, and cutting the other out of the loop regarding your child are all very real and very hurtful possibilities. There is a struggle to balance your love and devotion to your spouse and marriage while also meeting the needs of your child. Some days you almost feel like you have to choose one or the other. It’s a feeling that completely sucks.

This doesn’t apply to just spouses, but to the child being cared for and other children in the home as well.You see professionals fail to mention to also make plans for your other children- counseling for the adjustment in home life, planning out time to spend one-on-one with them, and trying to explain what is “wrong” with their sibling. Their school work may suffer and it’s difficult for children and siblings to know how to answer the questions that people will always ask. There are little to no organizations geared to assisting a family from a holistic point- addressing the child with the disorder, the parents, and other siblings. Finding the right support group or other organization is extremely difficult because, again, you are trying to find something that meets the needs of a group of people.

Finding a case worker/manager to answer your questions or to try to guide you through the maze that is the mental health care system can be an issue. The lack of providers and other team members that are involved in managing your childs care is lacking across the nation. The Utah State Hospital has approximately 350 beds to serve the entire state population of just over 3 million people. That serves less than 1% of the population. At Utah State University the wait to see a mental health care professional is 4-6 weeks.

Yet, at the end of the day, you keep pushing on. You continually pray for good days, small victories, and achieving the balance your family needs. You pray your marriage will withstand the challenges and that your other children grow up with a deeper  compassion for people. Outside of being able to cure your child or loved one, there is nothing you would change. You know deep down that you’re the only person who can care for them the way they need to be cared for. I will sacrifice and give, seek knowledge and guidance, and show love.

I don’t view my daughters disorders as something that makes her “beautiful”, “special”, or any of the other sentiments some people use to make their situation seem better or easier. I hate everything about her disorders. This isn’t because of the effect it has on me or my family but because it’s something that can’t be cured. She will always have to work 10 times harder than her peers to be successful. She will always have to cognitively deal with her emotions and manage her well-being. It’s a heavy load to carry and it’s my job to give her all the tools she needs while I can still make her take them.

Granted I have a strong faith base and fully acknowledge that God is helping us get through the ups and downs. Without Him, out life would surely be in shambles right now. Things aren’t perfect and on some days things aren’t even good. Despite this I know that, “Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance,  and endurance produces character, and character produces hope,  and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” (Romans 5:1-5, ESV).

I take my role as a mother/caregiver seriously. Even though there were so many things nobody told me about mental illness, I have become more aware & educated in my goal to provide for my family as a WHOLE. To meet the needs of my daughter with a mental illness, to show my other children that they are equally important and loved, and to hold my marriage together to the best of my ability. And when I fail, which I do, I know I can “Let go, and let God”.

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Trying New Things & Worry, Worry, Worry…

Audrey’s first week of school went well, and I couldn’t be more thankful. She appears to be starting out on the right foot with organization, a good attitude, and loosening up a little more every day. This week is volleyball tryout’s. She wants to try-out and I am going to let her. If any of you know Audrey’s history with athletics, ankle issues, and basic issues with gravity then you can understand my concerns there. Then there’s the whole aspect of whether or not she makes the team. I know how failure and rejection can affect her. I just hope and pray she knows how to handle it if she doesn’t make the team, but also enjoys the experience and gains confidence from it.

She’s a little more uptight at home and we’re struggling with sibling relationships and communication overall. Respect for our parents and knowing how to act appropriately for a 14 y.o. has become a bit of an issue. Not unexpected given her age but compounded with all the other things makes every emotional event amplified. Some days I feel like the Great Wall of Siblings needs to be built to keep them from invading each others territories. I’m also starting to think that a total non-interference stance (at least with the older two) might not be the worst parenting idea. They are old enough to communicate, they have been taught general manners, Audrey has skills to use, and Laila for the most part (MOST part) will do what’s necessary to get the argument over with. Tessa is so young she’ll just go with what her siblings want…rainbows will come out…unicorns will walk the backyard…and I’ll wake up to a closet full of my favorite clothes with a week of perfect make-up…

Wow. That brief trip to La La Land was amazing.

Anyway, something has to give at some point. Whether they figure out how to function together or we instate Marshal Law at the homestead. Luckily, I have Shane to help me & calm me, my parents to give me a break, and the good Lord to turn to in any situation.

Philippians 4:6-7 (ESV) “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

 

What is Trapped Amazingness?

“I wish I was dead so I could stop feeling like this!”- Audrey, 8 years old

Yes, before life was ever complicated or hormones or boys or the angst of the teenage years started, my sweet child wished for death. She didn’t understand the anger, the confusion, the pain, or how to reconcile knowing she was different but not knowing HOW she was different. She had just begun to experience all the wonderful things life had to offer in the microcosm that was her world in our small town in Northern Utah.

Audrey had always been a little “different”. I had inquired over her early years about various attributes that seemed a little off but was always told that since she was developing within the norm that I shouldn’t worry, so I tried to squash the feelings of concern and did my best to be a good mom. She was loving, active, a little quiet and reserved, but enjoyed life. She had a great imagination and in general got along well with her younger sister, Laila.

As she got a little older, her silly and playful demeanor started to give way to surprising anger and an overall feeling of being difficult for the sake of being difficult. She was had become overall unpleasant with moments of normalcy in between. Meltdowns, refusal to wear certain clothing, anxiety at new or unplanned activities, and a lack of empathy  or understanding of other people’s feeling began to appear. These emotional highs were eventually followed-up with crying, guilt, and serious feelings of worthlessness. I didn’t understand what was happening to my daughter, so I clearly couldn’t expect her to explain it me nor understand it herself.

It was at 8 years old she began outpatient therapy. It seemed to help even her mood out and gave me and me husband tools on how to deal with her in the most effective manner possible. This type of therapy went on for 4 1/2 years with adjustments being made as her symptoms changed in type and severity. Her only official diagnoses were unspecified anxiety, mild depression, ADHD inattentive type, but these didn’t explain the meltdowns and the mood related issues. Over these 4 years, we watched her slowly change from a flourishing child to an awkward, insecure, and floundering young lady. We were beginning to have explosive arguments that came out of know where and stemmed from what would be considered small issues to your regular child.

Finally, at almost 13 in March 2015, Audrey came to us (her parents) and admitted to wanting to die and having tried to do so on several occassions. This would be the first of three emergency admissions to the adolescent mental heath unit over the next 8 months. The first stay was 4 days with a one month period of recovery. Her second admission lasted 17 days due to the severity of the incident that put her in the hospital and how long it took to stabilize her. Her diagnosis was changed to anxiety, depression, and Disruptive Mood Dyregulation Disorder. After that she was in a residential facility for 2 months due to how much she had deteriorated mentally and emotionally. My husband and I had little to no resources or help in educating ourselves in this change of behavior and diagnoses. Her residential facility was not tailored to her specific needs and she came home in July of 2015. From there we put her in a day treatment program; she attended school half-day and then had theraputic  activites for the other half. She had group, one-on-one, and family therapy, and came home at night. She attended this program for 6 weeks and made some progress, and eventually went back to her regular school in the fall just 2 weeks after it started. While she had made some more improvements and showed signs of making a cognitive connection to her behavior and how it related to it effected her path in life, relationships, and future- we were guardedly optimistic. We had been able to get a full psychological examination by a highly recommended and respected clinic in our area.

Six weeks after leaving day treatment Audrey had her final admission to the inpatient unit. It was the worst night of my life, and one she actually barely remembers. Multiple police officers were involved, a physical altercation, an attempt at hitting my husband with and iron fence rod, trying to run away at 10 pm in her nightgown and barefoot, & cocking back to punch a police officer. She actually threw an item at a social worker and ended up with security posted outside her room.This stay lasted 21 days and less than a week later we got the results of her psychological testing back. She had co-occuring diagnoses of Oppositional Defiance Disorder, Disruptive Mood Dysregulation Disorder, anxiety, depression, and emerging traits of Borderline Personality Disorder.

The entire word stopped and everything made perfect sense but was also spinning out of contro at the same time. The hospital would not release her without a long term treatment plan due to the threat she posed to herself and others (at the time). This resulted in her admission to the state mental health hospital. She was gone for 6 months. Audrey lost out on the last 6 weeks of 7th grade, basically all of 8th grade, missed out on a couple family trips, could not come home for Thanksgiving, Christmas, or Easter, and missed visiting her dad during her normal visitation time. She missed her sister’s birthday.

So, what is Trapped Amazingness? It’s the person and possibilities being suffocated by their mental illness. It’s all the abilities they poccess but cannot execute because of the strangling set of emotional and mental ties that hold a person back on every level of life. It’s the loss of friendships, the institutionalized behavior that a child develops after being hospitalized for 6 months. It’s feeling like you’re labeled as “broken” forever and not being able to do anything to change their minds. Trapped Amazingness is losing the passion you once had for things like music, art, and theatre because of not wanting people to see “YOU”. It’s making incredible, amazing, and mind-blowing progress in your therapy but ending up in the same place in your head- paralyzed with fear, filled with doubt, angry for no reason, and wishing you could avoid the whole world.

Trapped Amazingness is all the beautiful things Audrey is and able to do being wrapped tightly in her head, stuck as ideas and dreams. Trapped Amazingness trickles down to the effects it has on her sisters and family. It’s trying to explain to family and friends the situation she’s facing, and the situation your family is dealing with. Trapped Amazingness is breaking down the walls of being stigmatized. It’s knowing she may miss out on the wonderful, beautiful, and life changing places, chances, and people of this world. Even more troublesome is that Trapped Amazingness is having her light shadowed enough that the world may end up missing out on a truly amazing young lady with so much so offer.

Don’t get me wrong, we now have hope for Audrey’s future. She has a real chance to live a productive life and accomplish those goals and dreams. We have faith that since she has come this far, God will take her even further. I’ll explain the changes that took place during her treatment in another blog.

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