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Finding Hope

NOTE:  This blog was originally written as a journal entry for my Peer Support Specialist as part of my Wellness Recovery Action Plan.  It reads somewhat choppy, but I wanted to share it nonetheless.  My children have given me permission to share their medical information as long as I don’t use their names.

(Trigger Warning:  Reference to suicide, emotional abuse, and trauma.)

“Hope is the life force that keeps us going and gives us something to live for. Hope is a crucial part of dealing with life’s problems and maintaining resilience in the face of obstacles. Even a glimmer of hope that our situation will turn around can keep us going.” – Joe Wilner (How We Lose Hope and How to Get it Back)

The word “hope” is defined as a feeling of expectation and desire for a certain thing to happen. I sit here staring at my computer monitor trying to think of things that bring me hope. Where is that feeling of expectation and desire for a certain thing to happen?  I seem to be lacking it.  I am in full-on survival mode and have been for some time. The feeling of hope seems to not be in the equation for me.  

I sit here reminding myself it has been bleak before, I mean really bleak. Bleak to the point where I didn’t want to live anymore.  I was never suicidal, I just wanted the physical and emotional pain to end and I only saw death as a way to finally escape it all.

What kept me going?

My responsibility to my two young children is what kept me going. I refused to leave them without a mother.  They were only a baby and a toddler at the time and they had a father who wasn’t always around and grandparents who only wanted to involve themselves on their terms, which was limited. 

This all happened years before I was diagnosed with Autism, years before we knew both my children were also autistic, and years before realizing my daughter also had Bipolar. Medical trauma, grief, chronic pain, post-partum depression, family neglect, emotional abuse, isolation, lack of a proper diagnosis, lack of support from anywhere lead me into the worst autistic burnout I have ever experienced and without a proper diagnosis I had no idea what was happening to me.  I thought I was losing my mind.  I was diagnosed with PTSD during this time.  This diagnosis would eventually grow into Complex-PTSD.  

I have experienced burnout many times since, but never to the extent of how it was during those very dark, dark days of my late twenties/early thirties. Unfortunately, I am finding myself horribly burnout out again, more so than I have been in a very long time.  I am 41 years old.  My daughter will be 16 next month and my son will be 14 two months after that.  One October night in 2012, my world once again began to fall apart.  My husband, whom I had been with since 1998, sat me down and told me he didn’t want to be married any more, he didn’t want the responsibility of a family any more. 

Things continued to get worse and worse. My husband was self-destructing from a life-long struggle with untreated severe clinical depression and he was taking the family down with him.  I will not go into detail of the three years of hell that my family went through over this, but I will say that my son developed PTSD from emotional abuse by his father.  My daughter grieved like her father had died, yet there was a stranger walking around with his face. 

Fast forward three years, my husband finally agreed to get professional help and has since come home. We have spent the last year trying to rebuild our family.  Five months ago we moved to a very isolated area with dream.  We would build a house together and start our new life as a family, all four of us together.  Unfortunately, life happens when you are making other plans. 

We have been living in what can be described as a glorified shed with tarps for walls. It is the end of November. We have no plumbing or insulation. What electricity we have comes from heavy duty extension cords that are plugged into the meter outside and drugged into the house. We can’t run much on them or we end up popping circuits.  We do have a wood stove, but with no insulation, it can only keep the house just below 50 degrees Fahrenheit, the bedrooms are even colder.  We are miserable.

Due to unforeseen financial problems over the last few months, who knows yet when we will have plumbing. My in-laws’ house is about a football field’s length away. We utilize their kitchen and plumbing. They are very caring people, but their house is small and they are very elderly.  My mother-in-law has had two strokes, is diabetic, has blood pressure problems, and needs round the clock care which my father-in-law provides.  Their house is very unpredictable and stressful.  It is hard to explain, but no one can handle being in their house for more than a few hours. We are looking at another six to eight more months without plumbing. It realistically could be longer than that.

Even though I call my husband “my husband”, we are not legally married any more. He made sure of that during those three years of hell.  He recently has informed me that he doesn’t know what makes me happy and he doesn’t know how to meet my needs when it comes to our relationship.  That really hit me hard. After all these years, he still doesn’t know how to be a husband to me (he has admitted that he has sucked at being a husband and father), but there is a positive note to this.  He wants to learn and he is listening.  Progress has been at a snail’s pace, though, painfully slow, but for the first time he is putting in real effort. He is committed and is determined to make our relationship work.   

Then there is my employment situation. I have been a certified teacher for 18 years in grades Kindergarten – 12th grade.  The 2011-2012 school year literally almost killed me with stress.  Over the past four years I have slowly been transitioning myself away from working a daily teaching job.  I can no longer physically or mentally continue working every day and also care for my two children who cannot attend a regular school day at a school.  They are both homeschooled, but are also enrolled in our local Home Link program, and my daughter receives her education services at our local high school by attending only mornings Monday – Friday. 

I finished my Master’s degree last April. I now officially have the credentials to say I am both a professional in Autism Education and a Science Teacher, yet I am still under employed and I don’t see how that is going to change anytime soon.  As of now I have five invisible disabilities:  Autism, Generalized Anxiety Disorder, Ehlers-Danlos Syndrome, Complex-PTSD, and Dyscalculia.  I struggle everyday with chronic pain, Misophonia, anxiety mixed with depression, and I struggle to live in a world that is not designed for someone like me. I have been on ten different anti-depressants, five different anti-anxiety medications, and three different sleep aids.  I have tried a variety of pain medications as well.  I have paradoxical effects with all these types of medications. Nothing works for me and only makes things worse.

My medication is running. I have been a runner for 23 years and I fight every day to stay out of a wheel chair.  Due to the continued degradation of my connective tissues all over my body from Ehlers-Danlos Syndrome, it is only a matter of time before running may be taken from me. I have already had to give up weight lifting, backpacking, mowing, gardening in other than large pots, picking boxes up, moving furniture, the list keeps growing every time another injury occurs or another body system begins to fail. I carry on, though. I just brace up my joints, bind up my torso, and continue to persevere.  I have to, but it gets harder and harder when the feeling of hope just isn’t there. The chronic pain wears you down.

With all of this, I am still struggling in thinking about what brings me hope.

The first thing that comes to mind as I have been typing all this out are the two young people who kept me going before when I found myself horribly burned out, my two children. They are everything to me and I am determined to persevere above all odds for them, always.

I have been told by my own mother that she would never be able to do what I do. If it had been her raising my children instead of me, my daughter would have been sent away a long time ago. As for my son, his needs would also have been ignored just like mine had growing up, because he is so “high-functioning” in my mother’s eyes.  Neither my son nor I are “high-functioning”, but we are quiet enough to be easily ignored.

Both my children have Dysgraphia and both are autistic (my daughter as an accompanying expressive language impairment and my son does not).

My daughter was also diagnosed with Bipolar II (but it may instead be Schizo-affective Disorder – Bipolar Type) with debilitating anxiety. She takes six type of medication either once, twice, or three times a day depending on the type. We have alarms set to help her remember to take her medication. She has been hospitalized once for suicidal thoughts and hallucinations telling her to use knives to kill herself.  

My son was also diagnosed with Generalized Anxiety Disorder, Panic Disorder, Agoraphobia, and Social Anxiety as well as Misophonia. He also struggles with re-occurring depression. He takes two types of medication once or twice a day depending on the type. He has been on suicide watch twice.

Then there is the glimmer of hope that comes when I look in my husband’s eyes now and see the man I married in there. In his eyes I see an older, tired, and struggling version, but I see hope there, too.  He sees a future for us, a future that I thought we had lost that one October night when he decided to give up on me, our family, and the life we had. 

I have not reached the same point where he is, but I want to.  This place where we live now is where he grew up.  This is his world, but it is not mine.  This is why I am not at the same point where he is.  This world is so foreign to me.  The language is different, the mannerisms are different, the way of life is different, and I am cut off from my world due to our rotten living conditions.  No internet and all my belongings, my tools I use to self-regulate and make my environment safe and comfortable, are all locked up in storage.

My senses have been on overdrive since moving here. Everything is too loud and too bright. It hurts here.  Then there is the problem of my husband’s recent poor choices haunting us.  During those three years of hell he involved himself with four women in ways he shouldn’t have.  One of these women he purposely used to rip our family apart and my children and I caught him with her. Neither had feelings for each other, which just made it worse for me.  This woman ended up marrying my husband’s first wife and they both show up at my in-laws’ house on a regular basis. They are also both invited to family gatherings, gatherings we can’t go to because of their presence.  I am reminded of my recent trauma and loss all the time.  I can’t get away from it. This has taken a considerable toll on me.

“Though, when we begin to lose hope, things can seem bleak. When we run into constant resistance and are prevented from reaching our goals we can start to feel like there is nothing to live for. If we can’t get to where we want to be and don’t feel in control of our life, what’s the point?” – Joe Wilner (How We Lose Hope and How to Get it Back)

I have been finding myself asking, “What’s the point?”

What is the point? Why do I keep going when all there seems to be is endless struggle and pain?

The answer:

Because I must!

My life would be very different if I had been dealt a different set of cards. I know this, but there is no point in lamenting over that fact. I was dealt a certain set of cards and I have to live with what I was given and make the most of it. 

Over the years, I have written a lot about persevering and not giving up. I have to keep on fighting.  I have to keep moving forward.  I have to keep trying to reach that light at the end of the tunnel.  When I was at my darkest all those years ago, I kept telling myself that the tunnel will end and light will be reached again.  I knew it would happen, because that was the only option available.

I am there again telling myself that this dark, burned out tunnel that I have found myself in will eventually end. It has to.  I don’t know what I will find when I reach the light again.  My life may once again be transformed into something I wasn’t planning on, but at least I will be there to see that transformation. 

I will persevere. I will keep moving forward.  I will keep on keeping on.  That is the only option I have. 

 

Perhaps that is where my hope really lies, by keep on keeping on . . .

 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

― Martin Luther King Jr.

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“I Don’t Know What To Do.” – A Parent’s Dilemma

NOTE: This blog was posted with my children’s permission. It may be removed at any time if my children feel they no longer want this information shared in this public format. Information contained in this blog involves the struggle with mental illness in conjunction with autism. 

Trigger Warning: Reference to suicidal thoughts and plans for suicide. 

I don’t know what to do.

For seven and a half years we have been trying to find the “right” path, the “right” combinations of medications, the “right” program for school, the “right” way to handle issues at home. I don’t know what the “right” way is anymore.

You can’t help a person who doesn’t want to be helped.

I have to keep reminding myself that. You can’t help a person who doesn’t want to be helped.  All you can do is give them a door and directions on how to go through that door.  They have to decide if they (1) want to go through that door and (2) if they want to put in the effort necessary to go through the door.

Even if they do what is necessary to go through the door, they also have to keep putting in the effort to be able to stay on that other side of the door. If they don’t, they fall backwards.  I understand that maintaining that effort is hard, especially in the beginning.  It is like one step forward and two steps back. This is why proper support is so important.  It keeps the person from sliding too far back.  They need a hand to hold on to, a hand that can help guide them, especially on those really difficult days

The thing is, that hand that is always there can only do so much. That hand can beg, plead, bargain, demand, surrender one day only to try again the next.  The hand can keep doing that day after day, but that hand will start to question how long they can keep at it. How long do they keep putting in the effort when the other person that they are trying to help refuses to grab hold? How long do they allow the other person to continue to disrupt the lives of others in the family? 

It sounds selfish, I know. A parent should not waiver when helping their child.  A parent needs to be there always, right?

I just don’t know what to do anymore.

We have tried so damn much, even tried things multiple times just to make sure. This week my oldest will be ending her 90 day outpatient treatment program and I am afraid for her.  I am afraid what is going to happen next and the stress that it will put on her and our family. The first month and a half had been very promising.  She was calmer than I had seen her in such a long time.  She was excited to go the program. After losing three months of school due to emotional distress, she actually wanted to go to this school/counseling/outpatient program.  Unfortunately, things have taken a rather negative turn.  Over the last month and a half and she has had two depression break through periods.

She never made it to the program last week and only managed three hours of school work. That doesn’t bode well for passing 10th grade.

Seven and a half years ago, my daughter was diagnosed with bipolar. Over the years, that diagnosis evolved into Bipolar II and Autism Level 2 with accompanying expressive language impairment.  She has started on psychiatric medication when she was only eight years old. She has been on as many as six different medications at a time taking them 3 – 5 times a day and still we have been no closer to establishing stabilization of her moods.  She will tell you that the medications have slowed down her mood fluctuations, but that is it. The official term for the type of bipolar she has is Juvenile Onset Bipolar – “Fear of Harm” Phenotype that is ultra-rapid cycling. 

For more information about “Fear of Harm” Phenotype – The 6 Dimensions of the Fear of Harm (FOH) Phenotype

For more information about rapid cycling Bipolar – Rapid Cycling and its Treatment

She ended up in the hospital this past spring due to hallucinations and suicidal thoughts. The voices were telling my daughter to use knives to kill herself. At that time it was thought that maybe what we are dealing with is Schizioaffective Disorder – Bipolar TypeMy daughter has talked about her hallucinations for years, but this was the first time the voices were telling her a suicide plan.  Only time will tell if her diagnosis evolves again.

Whatever my daughter is struggling with, we have yet to find a combination of therapy and medications that will help her stabilize. Our goal is six months of stable moods before we consider her stabilized.

It is not just the rapid mood cycling that is causing issues, it is also the mixture of bipolar and autism. Problems arise, because treatment for one will cause the symptoms of the other to worsen. This requires a very delicate balance of care.  There is also her age to consider.  In the state where we live in, once you turn 13 years old, you have a choice regarding your mental health care.  You can chose to not receive care, you can chose to not have your therapist disclose information to your parents, you can chose outpatient or inpatient care.  Inpatient care can be involuntary, but that takes a very long paper trail documenting pain, struggle, and failure.

We were fortunate enough to be able to have access to the outpatient treatment program that my daughter is just now finishing. It is two hours away from our house and it is an all-day affair (8:00AM to 4:30PM) Monday – Friday. At first it was workable.  It was summer time. I wasn’t working (I’m a teacher). We had been able to get fuel vouchers from Special Mobility Services, but only for a short time.  Our fuel vouchers were revoked for reasons we still do not fully understand and neither does the treatment center nor my daughter’s counselor. 

I live in a state that is rated 49th in mental health care.  What the treatment facility told us was that we had fallen victim to a system that is broken. There was nothing we could do.  I wasn’t going to pull my daughter out of a program that was helping and that she wanted to attend. This meant paying for all that fuel ourselves.  We are a low income family. Having to pay for the fuel in order to get my daughter needed medical care has put a considerable financial hardship on us.  Food is scarce in my house. Bills are paid late or are only partially paid. I stay in town for 8 ½ hours at the library Monday – Friday waiting for my daughter to finish her day, then we drive two hours to get home.  Most days my son joins us so he doesn’t have to be home alone.  We don’t have internet at our house or television services.  Being at the library allows my son access to the internet so he is able to work on school assignments.

Both my children are autistic and both are students of our local Home Link/homeschool program. They have recently started school in a third school district. The first failed to follow my son’s IEP, the second was honest with us about not knowing how to help my son. When people ask my son why he is in home school, he often tells them, “The school district didn’t know how to help me with my mental illness”.  He has debilitating anxiety issues (Generalized Anxiety Disorder, Agoraphobia, and Social Anxiety) as well as depression. He also has misophonia  which causes considerable problems for him. Just to be clear, Autism is not a mental illness.  It is a developmental disorder.  When my son speaks about his mental illness, he means exactly that.  He is not talking about his autism.

For more information about Misophonia – The Symptoms & Triggers of Misophonia

The first school district refused to grant my daughter an IEP citing loopholes as the reason. When we moved to the second school district, we discovered that she was three years behind her peers in reading ability. I ended up getting my daughter a private tutor to reteach her how to read and my son how to write. My daughter has gained ground these past four years, but is now four-five years behind her peers in reading ability.  It took nearly four years and a hospital stay before the second school district granted my daughter an IEP.  Both my children are highly intelligent, but struggle with learning disabilities.  Both have dysgraphia and my daughter also has dyslexia. Both need extra social and emotional support at school.

All four of us, both of my children, my husband, and me tend to have paradoxical effects from medications that are designed to affect the brain in some way. If not paradoxical effects, then no effects at all, meaning no benefit from the medication. Whether it is psychiatric medications (all of us) or pain medications (mainly me) it just doesn’t work for us.  Between adolescence and the sensitivity issue with medication, finding the “right” combination of medication has proven to be quite a challenge for my daughter. 

The most recent change was introducing Lithium. Yes, Lithium, the go to drug for bipolar, has been tried. It affected her bladder, her eyes, and caused agitation. Her body also metabolized it too fast. We could never get a high enough therapeutic dose in her body and the medication was increased three times to pretty high levels. We went back to using Tegretol which she has had some success with in slowing down her mood cycles. Hydroxyzine, which is an allergy medication, has helped with her high levels of anxiety. It is fast acting, but not enough. She was also taking Geodon (another mood stabilizer) that helped strengthen the effects of the Tegretol, but has since stopped due to insurance problems with getting that particular medication. She takes medication three times a day and is able to add a smaller hydroxyzine dose two more times to address her anxiety if needed.

Next week she starts half-day attendance at our local high school where she will receive the services listed on her IEP. The rest of her schooling will be at home.  This past week she fell into another depression period. She stopped caring for herself, stopped caring about anything, becoming defiant and aggressive. 

Part of this is not her fault. She has no control over what her brain does.  What she does have control over is using her skills, not hurting people verbally or physically, and wanting to get help. I understand that when you use up too many “spoons”, using your skills is just not an option.  I get that.  I have been there many times.

I don’t have the same struggles as she does, but I am personally familiar with some of them, and I also have the advantage of being an adult. I have had years of practice in developing my coping skills. I am autistic as well.  I struggle with debilitating anxiety and I also struggle with depression and Complex-PTSD, but I don’t have bipolar.  I have no idea what it is like to be at war with yourself in the way she describes.

I can help guide her in calming strategies and help her establish a sensory friendly environment. I can help her break down her school work into more understandable parts. I can remind her to take her medication and I can take her to her counseling appointments. I can advocate for her both with the doctors and with the school.  I can be there when she needs a hug and encouraging words when all her internal struggles become too much. I can tell her that I love her and will always love her even when her brain is telling her that everyone hates her or when her brain tells her that she hates everyone.  I can be that hand that is always there for her, but she needs to put in effort as well.

I can’t do everything for her. I understand that she is developmentally delayed, much more so than her brother and me, but she is also a teenager with typical teenage behaviors. She does not need to be coddled.  She needs to be treated as the 15 year old that she is.  She is a capable person, but either doesn’t believe it or doesn’t want to be. She regularly pulls out her helpless card citing that she can’t do anything; this includes school work, house work, and any every day thing.  She doesn’t like to be told that she is 15, but says instead that she is nine years old or six years old depending on the day and the level of her anxiety.  Sometimes she is clearly 15 years old and makes it well known, especially when she wants to control everything and everyone. The age she feels fluctuates with her moods.

I often remind myself, particularly on harder days, of all the amazing things that makes my daughter who she is. She loves Doctor Who and Star Wars.  She also loves Science Fiction, Action Adventure, and Fantasy. Her, her brother and I often communicate using echolalia from these different genera.  She speaks the language of science and often talks about becoming a limnologist when she grows up. She is the “Blue Earth Saver” as she is known on the computer games she plays.  She loves animals and is so gentle with them.  She is an incredibly perceptive and empathetic person who is deeply affected by stories of war, violence, death, and struggle. Her school work has to be adjusted for this reason.

My daughter is such a strong person and has such clarity when she is between mood swings. She has been through more crap during her short time on this planet than most adults have had to deal with their entire lives. This is why I think she is tired.  She is tired of the constant struggle.  She is tired of nothing working.  She says the medications just covers things up, just a Band-Aid, they don’t work. She tired of the constant war in her head and feeling afraid to leave our house. She is tired of everything hurting. Too bright, too loud, too rough, too many expectations, no understanding, no order, no predictability.  Home is safe,  home makes sense, home is where her things are, home is where her pets are, home is where she can escape into unconsciousness and sleep the day away.  

Therein lies the problem. She has been progressively giving up. Giving up her dreams of the future, giving up trying to do well in school (she was on the honor roll all through middle school), giving up on practicing her skills, giving up on trying to work with the family as a team, giving up self-care, just plain giving up on everyone and everything.  She is done.  That is it. No more trying. She is done with it all.

With the days getting shorter and colder, she is already beginning to slide backwards. The outpatient center was helping her, but continued progression requires her to put in the effort. She is done.  No more effort. 

So, what does a parent do in this situation? Just let her continue to decline?  Have her end up back in the hospital over and over again?  Have a judge end up finally taking her rights away so she can become an involuntary inpatient? Have a judge take mine and my husband’s rights away as parents which would lead to her being pulled out of our house and put into the system where a social worker controls her life?

These options are unacceptable to me.

I don’t know what to do.

I don’t know what else I can do to help her.

Seven and a half years of fighting for services from the schools, doctors, and the government. Seven and a half years of struggling to find the “right” combinations of medications. Seven and a half years of constant questioning and research on my part in trying to settle that little voice in my head that says we are missing something. She shouldn’t be struggling so much. WE ARE MISSING SOMETHING!!!!

Her autism wasn’t diagnosed until she was 10 years old, two years after she was diagnosed with bipolar and a year after her brother was diagnosed with autism. When she was a toddler, she was tested twice for autism, but they told me she didn’t have a high enough score for the diagnosis.  What I didn’t realize at the time was that they were using a criterion that was biased towards boys. I had to push for her to be reevaluated to check for autism, because once she was put on medication, her autistic traits started to really show. The bipolar was overshadowing her autism.  I had to push to have her evaluated for learning disabilities.  I knew as a teacher and a mom that something wasn’t right, but, once again, she was over looked.  She wasn’t a behavior problem at school.  She was quiet and could be ignored. I had to get outside professionals to evaluate both my children, because the school didn’t see a problem, didn’t see how they both struggled far too much.

I have actually fought for longer than seven and a half years. I have fought for my children’s well-being since they were born. I have been a parent for 15 ½ years.  I am also tired and I am running out of options. 

My hand is there and I will continue to offer it to my daughter no matter what, even if she doesn’t take it. I am a parent.  It is my job. I am not giving up on her. She is my Sunshine and always will be.