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Please check out this blog at www.ajourneywithmentalillness.wordpress.com.  Thank you!

Another school year

The summer, thankfully, went fairly quickly.  It is a difficult time of year because normal routines are thrown to the wind and for those with transition issues, it can be very hard.

Fortunately, Ryan's therapeutic school had a fairly long summer program, and that was helpful.  His time home was pretty unproductive, largely chaotic and not much fun, for him or us.  Meds are working well on positive symptoms, but boredom, frustration tolerance, self-awareness, motivation, transitions, anxiety, cognitive ability and self-esteem are untouched.  Now that back to school routine is beginning, anxiety is at an all time high and we are hopefully in a period that will stabilize quickly.

Aidan, unfortunately, has not been as lucky.  The school district wants to ignore all of his diagnoses and blame them on me.  They will not acknowledge his difficulty, even though they know he has been seen by many professionals.  Insisting that he see an "independent" psychiatrist for another evaluation is as much as they will allow at this point.  Even with a lawyer, that is the most we could get at this time, despite his many difficulties and 5 hospitalizations.  They even went so far as to tell me that he would have done better in school, but I "hospitalized" him and that's why he missed so much.  It is very painful to know how ignorant most of the people involved in this process are.  You cannot just "hospitalize" a child, like taking them to the emergency room.  In every instance, a child must be assessed by the intake department (for those on Medicaid, as we are at this time, a child has to be assessed also by the county, so actually two independent assessments) and then approved by the psychiatrist.  To say that it is "me" doing the hospitalizing is completely ridiculous.

It is sad to know that we are not alone, either.  Many of the people I have met along this journey are struggling with the system as well.  Not being able to get services for those with mental illness is a terrible burden.  I feel for all those poor families that struggle to get the help they need for their kids, siblings or parents.

Moving Forward

The beginning of 2012 has been interesting.  Since January, my oldest has been in a therapeutic day school.  It is somewhat successful, but home is still very difficult.  I appreciate very much the people caring for him at the day school because for Ryan to be as successful as he is there, is quite remarkable.  I am happy that he is finally beginning to see some bits of happiness for himself, I hope that it continues to grow.

I just received my seven year old son's neuropsych testing back.  It is the same story, same progression as my oldest.  I am always trying to keep in the forefront of my mind that, "There is a reason."  I may not know what that reason is, but, hopefully, I can gather strength and forge ahead.  Life is DIFFICULT.

I am proud of the many strides I have seen my daughter make with accepting her brothers' illnesses.  I am thankful that they can begin to appreciate that she is truly an angel in their life.

When things get hard, I am always trying to remain faithful.  I look at the steps I have made in understanding and practice, to help my children cope, grow and be comforted.  I struggle, every day.  But, every day, I come back for more.  That is life; Fall down, get back up.  I am grateful that God helps me get up every day.

Sometimes, the blessings are the simple things, and they are enough.  They have to be.

Ending the Year

I'd like to say that I will look back on this year with fond memories, but I really can't say it.  However, I believe this year has produced the most growth for me in all of my years to date.  I credit this fully to handing my life to God in 2010...and I mean handing EVERYTHING.  I have always tried to defer to God, but in 2010 I said I was willing to give it ALL, and what a ride it's been.

There is a song, sung by the most excellent Lindsay McCaul, called "Take My Hand."  When I first heard it, live in concert, I could barely breathe for my sobbing.  I felt as though all of my thoughts and feelings were pouring out of her powerful song to us.  I definitely had a moment of bravery, and I definitely wasn't ready for what has occurred.  SO many things have changed, my life barely resembles what it was before 2010.  There have been times I have been absolutely TERRIFIED, and crying out, "Why is this happening?"  Always, God gently whispers, "It will be okay."  A lot of days, I'm still not sure.  But I'm willing to stay the course.

I want to extend heartfelt thanks to all of the people who have so willingly shared their difficult journeys with a larger audience in the name of hope.  Or, at the very least, letting others know they are not alone.  Special thanks to Lori Schilling, Randye Kaye, Kay Redfield Jamison, Jay Neugeboren and Ken Steele.  You have helped me so much.  Thanks also goes to the people at NAMI DuPage, for volunteering, showing up, and listening.  It has been really comforting to have you all.

Sometimes we realize things about ourselves that we don't want to know.  I have learned a lot more about my weaknesses this year.  I have a lot of work left to do.  I have to remember all the time, constantly remind myself, "Soften your heart."  It is easy to get angry, overwhelmed, frustrated, sad and desperate.  Those are the times I have to recite the mantra to myself, "It's not about me."  I think one of the key things to do in a situation you are totally unfamiliar with is to first put yourself in the other persons shoes.  What might they be thinking?  How might they be hurting?  How can I help this end as positively as possible?  Not easy work, but it is helpful.

I have also learned something about my strengths, and that knowledge is somewhat comforting.

My oldest is still in transition, and things may not get better.  Then again, maybe they will.  All I know now is that I must meet him where he is and try to deal as best I can.  There is still so much judgement from some other people.  It is discouraging, but then I remember, "Yes!  This is why I have loosened the tie."  I can't change others, so I need to change myself.

To Dr. Henry Cloud, you have done wonderful things for me this year through your writing, so thank you.

There are some special people that have tried their utmost to walk with me through this.  I want to thank, very sincerely, Colleen, Tom and Lisa, Ruth and Shelly.  I love you all.

Though I can't say I'm sorry to see this year end, I am trying to remain positive about the future, after all, God's got it covered. :)

Lessons

I thought about it today, when I read my last post.  I tend to write at my most down moments.  But, while it is therapeutic, I also want to make sure I include some bright moments, and things that I am truly grateful for.

I am continually humbled by the people appearing as "angels in disguise."  I have had some real, true blessed experiences.  I have a renewed friendship that I have missed.  I have some people extending me grace from afar, and people praying for us.  God is good.

While it might not seem like a benefit, because no one wants to have a mental illness, I thank God for the support  that my son is getting in certain places, ones not even he expected.

I am continually getting the opportunity to look at things in a new light, and I might not have had this experience otherwise.  I feel like I am able to really live in brokenness, and it is making me even more grateful for what we have.

I struggle, daily.  But, there is hope.  It may not look like I thought it would, and I know there will be plenty more really rough days, but for now, I wanted to express my gratitude.  I am grateful for the lessons I am learning, because I might not learn them otherwise.  I do believe this journey is making me a better person for all of the trials.  I wish that I could help my son, though, to understand that I would take away his torment and pain, if I could.  That is a lesson he will take a long time to learn, but I hope he does learn it.

Who's there?

It's really hard for me to believe it's almost Christmas.  Time here has flown by, and sometimes I feel like I live the same week over and over.  


This journey has become more difficult because although I am taking responsibility for the life of another person, my son, I cannot get inside his head, know his thoughts.  I am chipping away at a wall that has been built over several years, and I didn't even know how bad things were.  Many of the things I let myself believe because of the advice of those around me (including doctors, therapists, psychologists, psychiatrists, friends, family) were just WRONG.  I have always had an issue with self-doubt, and over the years I had believed it was getting better.  It didn't get better in time for my son.  If I had trusted my gut, I believe we both would have been better off, sooner.  But, I also have to remind myself daily that God has a plan, and I don't know best.  


Advocating is a full time job.  It is taking every last ounce of my energy.  I spoke with a state advocacy agency about helping me advocate, and the director told me I should work for him.  It was a great compliment, and I appreciated it, and it is a job I would normally volunteer for, because I believe in this so much.  Yet, I thought, I can't even manage a shower, so obviously, this is taking an inordinate amount of my time.  


My seven year old said to me today, "Mom, you missed the races at school before Halloween, and you missed the Christmas party today."  I almost cried.  I can't be everywhere I want to be, or even need to be some days.  I am at the hospital two to three times a day, every weekday. I have to get one child on and off the bus, and two others homeschooled.  I have to take care of bills, cleaning, laundry, business items, shopping, etc., etc.  It is absolutely overwhelming.  I can't be enough for everyone, not even me some days.


The school is telling me they really have my son's best interests at heart, and I want to believe them, but I don't.  I mean, I know they think they do, but in the end, everything comes down to money, precedent setting and lawyers.  Heck, even my interests are skewed sometimes because I am so overwhelmed, how could theirs not be?


I am going to go touring day schools and residential facilities in the next month, something I NEVER thought I'd do.  I am reading and absorbing again, The Quiet Room by Lori Schiller, and using it to eek out little thoughts from my son about his experiences.  Seemingly, a lot is very similar.  It makes me afraid for him.


My seven year old is now visually hallucinating, confirmed.  My oldest tells me the voices preceded that for him.  I am trying to intervene NOW, heavily, to see if my seven year old can learn about how to deal with things beyond his control.  This has been a ride like one I've never had.  God bless my children.


Who's there?  Not a question you want to have to ask your seven year old.  Hopefully, there will be grace and mercy for him, too.


Thanks to all the people I have come across who have made this journey just a little bit easier by their kindness and caring.  I am thanking God for you all.

Muddling Through

My son has been re-hospitalized, and my 7 year old just spent two weeks in partial hospitalization.  My daughter is depressed, and I'm concerned that it is becoming serious.  My five (almost six) year old is having tantrums and crying fits he never had before.  My husband and I are disconnected and overwhelmed.  I don't know what to do next.


I never thought I could feel this depressed ON medication.  I struggle with Major Depression, but that is why I take medication.  I can't even IMAGINE what things would be like if I wasn't on meds at this point.  My panic attacks are happening more frequently, and I feel so lost.


It is very difficult for so many things to be out of control.  When I told God I would give Him over total control, I didn't expect quite this ride.  I am still not sorry I did it, but I am feeling like I am drowning.  I had the privilege of  being able to see the Casting Crowns concert, which of course, was amazing, but a new artist, Lindsay McCaul, performed a song that left me sobbing.  It is called, "Take My Hand" and I feel like it was written about me.  I guess that's the great thing about songs, they can really show you that other people share deep struggles right along with you, same or not.


I want to sleep, I want to huddle up, stay home, and do nothing for days.  My "manager" as my friend calls the same part of her, is still in working order and won't let me do it, and I'm grateful.  There is this pit that I'm just inches from that I feel I could fall in at any time.  There are times I am scared it could really happen.


I can almost understand why it is so much easier for my son to deal with hospitalization.  Things are very simple there, and they don't require a whole lot of him.  At home, it is a different story.  We had a visit the other day, and he told me that when he gets off the elevator and sees us waiting to visit, it is like a dark cloud descends on him, one of anger and agitation.  That was hard to hear, but I know it's true....I've seen that dark cloud since he was 7.  He would never verbalize anything like this before now, and I wonder if the medication is allowing him to explain a little more of what is going on inside.


For now, life is about therapy sessions three times a week, visiting, staffings, and juggling everything else along with it.  I think that's why they call it "muddling through."  There are no clear cut boundaries to all the things that have to get done.  They all have to get done, sometimes at the same time, and you just have to do it, make it work somehow.


I am reminded daily to "Praise You In This Storm," and I'm trying, I really am.