Antipsychotic Medications

The decision to put Teale on an antipsychotic was hard won. She had suffered for years, all of us had. We had tried a few but the side effects had caused more harm than good. At first when we started her first antipsychotic I remember thinking  ~ "Wow, this is going to really change our life." Soon the doses would need increasing, her eating was so out of control. We felt like all we did was prepare food for her and her weight doubled within a month. Those were tough times, we saw some good, but to continue seemed foolish and her health was suffering. She had gone from 30 pounds to close to 60 pounds, her breathing was labored and she just seemed so uncomfortable. So we made the decision to wean her off and the behaviors came back full force. Her doctors and us would research and try other medications or we would combine medications in hopes of finding the perfect cocktail for Teale. Her brain damage made it more unpredictable how she would react to medications, so experimenting was the only way. She would have the rare side effect of mania or a rash or dropping blood pressure. We just couldn't get it right. Soon Mark and I accepted her life, our life as the best it could be. It wasn't perfect, but we were managing and maturity helped as Teale understood abstract thinking more. But then August of 2011 hit, Teale's behaviors went from managing to scary. She was explosive constantly, abusive, violent and without a filter Teale was BRUTAL! It was a month of complete hell. We had many doctor appointments to try and tweak this new level of intensity. I remember the blood drawl to check her medication levels being done just the day before on a Saturday. Her doctor also checking functioning levels, including thyroid. I had not expected to hear from her doctors until at least Monday, maybe even Tuesday and I remember hoping they would discover the reason my daughter was so off. I had taken Teale out by myself that Suday morning. It was a tricky thing for me to go out alone, but I wanted to try and give Mark a break. Teale had grown bigger than me that Summer, so my ability to control her physically was difficult. I kept my cell handy, knowing I could call for help if I needed to. As I stood in the store, my cell rang and it was one of her main doctors, Dr Tom. He started to explain the blood test results and that they had found the issue, her thyroid was showing signs of Hoshimoto's Disease. Soon my cell showed I had another call coming in, it was Teale's pediatrician, Dr Dave. Here it was Sunday morning and both her doctors were on top of this. I remember the confusion, wishing I was home with Google to research what was being bombarded at me. I also remember thinking how Blessed we were to have such caring doctors and or was this more serious than I knew? I know they were both worried about Mark and my mental state, as Teale was literally biting her own arm so much it looked like hamburger, on top of her abuse toward all of us. I had expressed how broken I had felt to Mark and both of them. The weeks had been exhausting, not only because of her behavior, but also because she hardly slept. I stood in the store trying to absorb the information. I stood there with Teale bugging me as to why my eyes were filled with tears. I just wanted to get home to Mark and get a better grasp on what we were dealing with. ~ to be continued ~ 

"Break"

"School break" is an ugly phrase amongst parents of special needs children. Break does not mean "break" to us like it may to you or the school staff that gets the time off from our kids. Deservedly, they get a vacation and I am not arguing against the need for educators to have time off. I am just shedding light on how "vacation weeks" effect families like mine and more specifically, my own family. My family is made up of five people, myself, Ellie, my husband, Mark, and our three children, Beau, our son (18 years old) and our daughters, Teale (15 years old) and Gwenn. (11 years old) At times in our marriage, our family has also included my nieces or my Mother in law who also lived with us. Our home has always been busy and full of life. Mark and I had run in home daycare for over fifteen years together, so "breaks"often meant more kids in our care. But daycare days ended about 2008 when it became obvious that caring for kids in our home was no longer the occupation we could continue as the parents of Teale. We had been barely surviving Teale's increasing behavior challenges and felt we were  putting ourselves, the children and Teale in danger. We hired extra help but the increasing care of Teale  made it impossible to do our job as well as we wanted to. We made the decision that the daycare had to be closed. Those were tough days, starting over, the uncertainty of our future for ourselves and our family was overwhelming. Six years later, we are still trying to find ourselves. Mark has a decent job, but we still struggle financially. We make far less and the cost of living has sky rocked. Not to mention the hidden costs of raising a child with special needs. I no longer work full time and because I am not college educated, I can not find anything that both pays a decent wage and respects my families need for me to be home often. I've worked here and there, but I have not fallen into a career path that is profitable for my family and flexible to our unique needs. I have vast experience in caregiving, of both children and the elderly. I know much about the special needs population and I have years of both advocacy and care taking. Yet my experience in the world today counts for basically nothing unless it is backed up by a degree. "Break" used to be a fun time. Maybe a vacation to somewhere sunny or just time with the family. Now I refer to school vacations as "survival week" or sometimes even "Hell week." Teale's behavior is off, she misses school, routine, her friends, but doesn't verbalize those feelings, just strikes out at us, her family. Today I am worn, a rage that caused a broken lamp, glass everywhere this morning has also caused my heart to ache. Teale lashes out at me, like I'm the cause of all her deep anger and frustrations. I am usually good at not taking it to heart, but today, I am feeling drained and angry at her pain. My PTSD is up, I'm on my guard, waiting and or wondering if she will snap at me again. I feel anxious, old and tired. I need to take better care of myself. I need to eat better and exercise, but I'm stuck and feel broken at times. It's stress that makes me want to eat sugar and I'm in a vicious cycle. I think it still amazes me how challenging life is with Teale, even though these are the golden years, compared to some. We all suffer, we all live our life in fear and we tiptoe around Teale's needs. May God hold us in the palm of his hand & may survival week fly by...with not too much of my spirit being broken. 

In the Darkness of the Night

I reached out in the night to make sure he was there. He had rolled over onto his stomach, as he often does by early morning, separating from holding me. I felt his hair in the dark, it's longer now than usual and I love how it feels in my hand. My hand slid down onto his broad shoulders and I instantly felt better. I had woken with something from a dream bothering me, thoughts of friends who are struggling were swirling in my head. A couple of my close friends are going through nasty divorces and many others are going through rough times in their marriages. I'm not sure they will stay together. Still other friends have parents aging, sickness and diseases setting in or progressing rapidly, Alzheimer's, cancer, Parkinson's and many other sicknesses. We are the sandwich generation. I lost both my parents early, before I turned forty, they were both gone. Mark lost his Dad when he was just a toddler and his Mom only two months ago. We are raw with pain. My heart hurts for many, including my husband who I know is struggling with the loss of the only parent he knew. It seems I am constantly praying for others. Happiness seems to be tough to find as I see so many who are in such pain. I know happiness is out there, we actually have many friends who are in great marriages and have healthy, wonderful parents. But these divorces have rocked me and I'm in a vulnerable state. I have no reason to think my life will become the hatred I see my friends going through, but I'm a child of divorce. I get needy and I ask for reassurance as I try to work through the pain I seem to absorb through my friends. I remember the pain I lived as a child and it floods my thoughts, day and night. Mark is used to this, he knows I need his reassurance often right now, but soon, I'll be strong again. He rides it, knowing I'll be myself soon enough, until the next time I get rocked by another break up or death. It seems we are in the age of divorce and our elderly parents getting sick. Death is all around us too, not just elderly, but young spouses also. This is a stage of life I'm not seeing an ending to. I often want to go back to the friends getting married and having babies stage of our 20's and 30's. Luckily, I can see that coming through our children, our friend's children, our nieces and our nephews. They have and will bring a different joy back into life, with their unions and the starting of their own families. I have one grandniece and she brings me immense happiness, much like I envision grandchildren bring. I can see the horizon, as the next generation ages and joy fills my heart with new love. Stages of life are filled with ups and downs. This seems to be mostly a down stage, I see much pain, but it is mixed with joy too, as life always is. So I caress his shoulders, remembering I am loved and once again, I feel peace in the darkness of the night. 

Hopefully You Don't Understand.

Hopefully you don't understand, because if you do, I know you have lived the same pain.
Living the same pain has never been what I have wished on others.
But I have wished for more empathy and less judgement.
I have wished for understanding.
I have wished that our heartache would end.
I have wished that our hope would not be broken by unkind words.
I have wished for the accusations that we could do something better, to be taken back.
I have taken a harsh look at our life and wondered if we are doing all we can?
I judge us.
I question.
I hurt.
I hope.
I live.
I love.
Hopefully you don't understand the pain I know.
Hopefully, you never will.

The Music Plays On...

He's been in bands since the beginning of our relationship. At first just a rock band, that played in bars around our area and branching out to some other cities too. Once in a while they would even travel together to places far away and spend a couple nights. They made a record, yes a record for all of you who think that was a typo. The thought was that records were fading out and it would be fun to be part of the era of records. It got some great attention, reviewed in Rolling Stones magazine, the words so favorable, one may have thought the road to stardom was opening up. Many local reviews encouraged this way of thinking and I sometimes wondered if our simple life would change. I knew his dream was to play music full time, Mark would love to make his passion his job. I've always encouraged it, after all a happy husband makes a marriage easier. He's better when he's playing, his spirits are higher, his self esteem boosted. When we've gone through dark times where life was all consuming, he has all but quit music. Probably those were the times I should have encouraged him more. When you are just trying to survive the day to day challenges of a daughter with severe disabilities and mental illness, often you can not see beyond the day to day issues. As life  and family took over our time, I may have lost track of his joy when he was making music. Music was not a big part of me until Mark, I enjoyed it and was open minded, so I was usually influenced by whatever my friends enjoyed. Mark introduced me to much more and I enjoyed his enthusiasm when we attended concerts of his favorite artists. The rock band faded as a few of us started to expand our families. The hours were tough to manage with our first baby, Beau being born and he walked away seemingly easily from the dream. I remember questioning it, my fears of him someday regretting that move. I was scared he would resent me and our family for losing his dream. Mark was content though and reassured me much that the hours of a rock band and closing the bars were just not fun anymore. He wanted to move on. So the original band split, it was mutual as I remember, a lot of years together and it felt like the group had run it's course. Some of the guys would form other venues and keep playing together, but as for Mark, he wanted to be a family guy. We had at least a few years without him being heavily involved in music. He still played here and there, occasionally he would sit in with friend's bands when we went out. He practiced sax, but maybe not everyday like I had grown accustom to, just pulling it out and playing for our daycare kids or our son. I remember teasing him if it had been a while ~ "What is that? Wait, I think I remember that sound." Mark always giving the same response ~ "Hahaha, funny dear." I would enjoy the sound of the sax once again and hope he was getting back on a roll of practicing, because I saw the difference in how he felt when he played. But often he just practiced for something coming up, a family occasion where he would be expected to jam with his brothers, who both had been part of the original rock band or when he made a special appearance in our church or with a friend's band. The hiatus ended when his brother asked him about joining a wedding band he had been part of. Wedding bands make decent money and they work better hours than the club/bar scene. He would generally be home no later than 12:30AM as opposed to the days of 3AM or even 5:30AM when we traveled to a city nearby where the bars stayed open until 4AM. It was a nice way for Mark to get back into playing and soon he was the frontman when they discovered his amazing voice. The challenges of being a frontman were many though, he rarely could get out of a gig, because there were no voice replacements. Sax is a little easier to find a sub for, there are plenty of talented sax players in town who could sit in and read parts. The wedding band thrived in those days, playing every weekend, sometimes even twice in a weekend. Mark enjoyed singing and he's a good showman, he can pull in a crowd and make it fun. Word of mouth got them many gigs and the band stayed very busy, but sometimes it got in the way of our life as a family. We missed many occasions together, I was often stag at friend's parties and events or just not go and we no longer could get away much as a family. When Teale came along, Mark was still heavily involved. As a matter of fact he played a gig on the Saturday I was still in the hospital after having Teale. He would almost miss my first time holding our daughter. I had wandered down to the NICU late that night, unable to sleep, probably worried about Teale. The nurse was about to change her bedding and offered me to hold Teale while she did. I stood there frozen in my pink nightgown and robe, sad that Mark was not there to share this moment. But Mark has always been a sweet father and husband, his children and I being a priority. He had finished his gig and instead of going home, he stopped to check on Teale and I at the hospital. As he walked toward me in his tux, the tears fell down my checks. It was probably 12:30AM and I'm sure he was exhausted, but he couldn't resist stopping to check on his girls. Our very first picture together with our daughter would be of him in a tux and me in a pink nightgown and robe. I can remember trying to force myself to hand Teale to him. When I was able to finally talk through the tears ~ "I want to hand her to you, but I just can't." Mark understood and told me it was ok. The months and years would go by and Mark would continue to play in the Wedding band, the money helped greatly as insurance didn't cover the many expenses of Teale's medical needs. But the challenging life of raising Teale would soon stress us and once again Mark would step away from the making of music that he loved so much....Fast forward to today and the stability of life with Teale has improved immensely. Over the last year or so Mark has gotten involved in many bands. Our dreams of him making it big are few and far between now, but his love of music still makes me wish he could do it as his full time employment. Presently he is part of several bands and or sits in with friends pretty regularly. I can't help but hope that someone will appreciate Mark's talents enough to hire him to do what he loves so he can quit his day job. I have always felt music helped Teale more than any of us could ever realize. We surrounded her with music from the very beginning and we both believed in the power of it's healing. Every night we left the NICU we would leave music playing quietly near Teale. Teale's NICU nurses understood our strong feelings around music and respected them, playing the tapes we left for our daughter in our absence. I've often wondered if Teale would have done as well in a family who didn't appreciate music as much as we do. I've given much credit to Mark for having the foresight to see music as an important aspect of our children's lives. As his parents had the same beliefs for him and his siblings, it was a natural progression to pass on the gifts and all three of our children are naturally talented also. Music surrounds our family and always will. I still often find myself hoping Mark is able to realize his dream of full time employment in music but even if that never happens, I know music was and will continue to be responsible for much good in our life together. 

Courage

I've gone through times of great dispair. I've hurt right down to my core and found it impossible to be hopeful for our future. My family barely surviving, Teale ruling us and our entire existence feeling completely out of our control. Mark and my pulling in the reins would be implied, even spoken by outsiders, but when you are not living the everyday pain and intense fatigue, there is no way to understand our circumstances. We've gone weeks, even months without decent sleep. We've had weeks of everyday rages that lasted up to an hour each and often there were multiply rages in one day. By the time we put Teale to bed, we would be so fried ourselves we could barely speak to each other or give our little energy to anyone or anything else. The housework would suffer, our other children would practically become self sufficient, even at very young ages. Beau and Gwenn were forced to grew up much faster than typical children. Teale's unstable mental issues have put both Mark and my mental states at risk. We have experienced extreme lows where thoughts of suicide and taking Teale's life seemed completely reasonable. We would talk about these thoughts with each other, knowing we would not follow through, but also understanding the feelings of hopelessness that only the two of us could comprehend. It is not easy to admit such horrific thoughts when she is mentally stable. The idea of losing her puts a pit in my stomach that makes me feel nauseous as I type these words. I believe by being honest and by sharing these very dark feelings, somehow it may help another parent feel less alone. We suffer with our children when they have extreme mental illnesses and rarely in those crisis times are we able to understand other parents have gone through similar situations. Teale's diagnosis of Bi Polar when she was just six years old helped my family to have hope again. She was put on a medication that has mostly worked for her. I say mostly because it doesn't magically take away the mental illness. Medications have lessened the intensity, but there are "breakthrough" cycles when the medication does not seem to work. Of course during those times we try to tweak her care with her psychiatrist and pediatrician. We also acknowledge without the medications being at a certain level in her blood, her behavior may have been far worse during those cycles. Luckily Teale depends on us, her parents, for her medications, so they are consistent. Many adults with mental illnesses stop taking their medications, mostly because they feel better and start to believe they don't need them. Teale does not have this option, Mark and I are vigilant, and she always gets her medications, keeping her blood levels stable is key. Her Bi Polar may have been lessened with the medication, but she was still psychotic at times. Teale has many mental illness diagnosis'. Her labels are many, from Intermittent Explosive Disorder to ODD or OCD or ADD, there have been many mental illness labels put on her since the tender age of four. Teale suffers from sudden, often unexplained rages. We have done seizure studies for weeks on end to try and determine if her rages are actually seizures. Teale has been hooked up to electrodes and has had to stay in a 8' x 10' room being monitored 24/7 for weeks at a time. One of us with her at all times during those hospital stays. The results inconclusive after weeks of extreme stress and upheaval in our life. We have traveled to "better" hospitals out of state to get opinions and we have discussed Teale possibly being a candidate for brain surgery to hopefully control her seizures and stabilize her mood disorders. We have witnessed her come out of rages with confusion and remorse. Never being able to determine if she has a comprehension as to what has just happened, as she looks at the destruction she has caused, the bruises and the blood on one or both of us. I have heard her say "What happened to you?" because I was bloody from her attacks. Her face blank, like she is not there. It scares me and I struggle to explain the strangeness of witnessing her changes in demeanor. Many times I have questioned if she is even in a conscience state during these episodes. That may be the single most important thing that gets me through, the realization that this is not my daughters fault, she did not choose this journey. We were treated carelessly when I was in labor and my daughter has to live with the results of this. You may think I am bitter and admittedly, at times, I am. Teale and my family has suffered a very challenging life because of negligence, but I had decided from the very beginning of this journey with Teale to not focus on that anger. Mark and I work at that often, because letting go does not just happen, it takes years and we are sometimes better at it, than at other times. More often than not, we see the Blessings, not the pain. More often than not, we are surrounded by the love of a village who cares and that is how we get through. So to those who have been there for us in love and in spirit, it is you we admire. You have lifted us in times of great despair and helped us to feel hope again. You have been our heros because without your love, we surely would have been in a very dark place. Teale has touched many lives with her courage, but my courage has often come from each and everyone of you. You just never know how much your words can lift a shattered soul and help them to keep on keeping on. Today and everyday, we need to remember to be kind to each other. May God Bless you and keep you safe. 

Was this the Beginning of the End?

When the behaviors started with Teale, it is hard to say. I believe it was during my pregnancy with Gwenn that we started seeing the big rages. I seem to recall that's when I started to not feel safe alone with Teale out in public. I was pregnant and of course everyone around us wanted to blame her behavior changes on my pregnancy. I have found the blame factor to be what people go to when they can not understand a child's behavior. We were accused of spoiling Teale, of not disciplining her enough, of not learning enough sign language, of not keeping a strict enough schedule and many other "bad parenting" accusations. My insecurities as a parent of a special needs child were raw. I believed parts of anything anyone said, thinking it was somehow Mark and my fault this child was so difficult and raged so often. When in public I was on my guard, scared of the next stranger who would point fingers and treat my severely brain damaged child as "just a discipline problem," as a brat and mostly as my fault. My fear of her raging and my not being able to control her had me paralyzed. I was especially worried because my pregnancy was considered high risk after the previous births of both Beau and Teale being difficult. Fear of her kicking me in the stomach if I needed to physically get a hold of her was high. Mark started taking Teale out by himself more and more. It was the changing of the tide in our parenting and it was the beginning of the "dividing and conquering family."I would have to guess on this, but I bet most special needs families understand this term or eventually will. Many of us use this method as a way of survival. One parent has the special needs child while the other has the typical child or children. Sometimes Mark would take our older son out with Teale also, but rarely in the last few months of my pregnancy did I go out alone with Teale. We felt our family unit falling apart, often this was especially upsetting to me. I missed being a family in the community, I missed my husband, who seemed to spend much of his "spare time" with Teale. I felt horrible for Beau because his relationship with his father was changing with Teale being all consuming. Mark was the only one who could physically control Teale while I was pregnant and for a long time after my cesarian for Gwenn that remained true. Add in the fact that after Gwenn's birth, I had to be her caregiver, as I exclusively breastfeed. The easiest way to deal with our family was for Mark to have Teale and me to have Gwenn and Beau. I remember sadness overcame me much at that time in our life. I felt so alone, taking care of our new precious baby was isolating enough. Feeling isolated is often the case with a new baby in the family, but then there was the fact that Mark was constantly on the run with Teale. I didn't see much of him and when I did, we just jumped through hoops trying to keep Teale happy and everyone safe. If he tried to stay home with her, she was so difficult, he would just end up leaving again. It was easier without her in the house, the YMCA to play or swim, a mall to wander, grocery shopping, Chuck E. Cheese, basically anything to occupy her, except being home where she seemed the most agitated. Besides when Teale was home, she was unpredictable and we worried about Gwenn and Beau's safety. If we weren't out with Teale, we were being bossed around by her at home. She was running the show and unless you have lived with a child like this, you will not understand how very little choice we had in the matter. A mentally unstable child is beyond exhausting, as parents, our only goal was to try to keep her happy and occupied. Our life was no longer ours, it was truly run by our middle child and no one understood how much we were suffering. Family mostly chose to keep their head in the sand, friends didn't know how to help us. It was a miracle Mark and I were able to keep our marriage in tact during those days. We were worn, unable to accomplish the basic needs around the house and we also were getting very little sleep, as Teale was up and down all night long. I felt hopeless, defeated and scared. Her rages were already so intense I could not imagine her bigger and stronger. I could not see the light, and even God was slipping from my life. I was so angry and confused by the pain we were all going through, what could I have possibly done to deserve this? Was this the beginning of the end, was this what Mark and my life would always look like? Would we ever find peace for Teale and in turn for our family? Or would dividing and conquering always be our way of life? I missed the dream of what I thought my family would be, I missed my husband and I think I resented Teale, who took him from me.