Sometimes You Have To Laugh....Even in the Midst of It

If you've read any of the last posts, you know that our life lately has been rough.  Er.  Rougher than normal rough.  No laughing matter, frankly.  But sometimes something happens in the middle of it all that is just hilarious.

And I consider it a true gift from God.  You've gotta' laugh when you're in the middle of this or something much worse than crying will ensue!

Last Saturday was that kind of gift.  My husband and I attended a wedding.  It was really at an awkward time since my oldest three kids were set to perform in their year-end choir concert.  Complete with formal gowns, gloves, a tuxedo and a bow tie.

However, one of my husband's younger friends was getting married, and we felt that it was important to go.  So the plan was for my almost-sixteen year old to babysit, and everyone was supposed to shower and get ready to get ready.  And then I'd swoop in with an hour to spare and help everyone finish up.

So the gift of laughter first arrived within three or four minutes of being seated in the pew at the church.  My lovely, love-of-my life, wouldn't trade him in for anything, husband began nodding off.  As he is famous for.  (But this was early, even for him.)  And I started the finger poking and arm nudging routine. Funny.  My insides were a little giggly.

By the end of the ten minute service, I had poked and prodded him for at least three or four separate sleeping infractions.   Thank goodness we were in the back!

Then we went to the church gym for the lovely reception, right up my husband's alley...barbeque with all the fixin's.  He wasn't sleeping anymore!  We enjoyed the meal...it was a date, really, and we reminisced about our wedding and laughed at some things that we would change if we could do it over again.

And then we got a text from my oldest daughter.  Sweet girl could not get the dress on.  And a raging fit followed, complete with breaking glass cups.  Ugh.  I told her to not engage, go into our room and we'd be home ASAP.

Then another text.  Pictures of broken glass.  Argh.

Then another text.  I held my breath for what would be worse than intentionally broken glass.  But this text was about my boy.  Who was supposed to be in the shower during this episode.  Only he wasn't really.  He was using my new hair scissors to cut off his eyebrows.

The gift was fully unwrapped.  I laughed.  I thought about it some more and laughed harder.  By the time we got to the car, I was laughing so hard that tears were streaming down my cheeks, and I was making strange noises because I couldn't catch my breath.  I laughed so hard that I had to lean on the minivan and gain my composure.

When we got home, clothing sensitivity and outrageous tantrums were in full swing.  There was no calming things down, making things better.  Getting to the concert was an exhausting, crushing event.  But once the concert started and I looked at my boy on that stage....all fancied up in his tux, fresh haircut and.....slanted eyebrows that made him look like an angry cartoon character, a warm smile crept over me.  And a tear slid down my face.

just some thoughts.....

Another day, another exhausting episode or two with only more to come.  Today is the first day of summer.  The first day that my daughter will be home all day, every day, with the exception of a couple of VBS programs, some math tutoring and a mini-vacation or two.  And I look ahead to a very tiring time.

She has now been on something similar to Tegretol for three months.  Initially, she had two fantastic days, and then back to the same old song and dance.  Her psychiatrist increased the med from 100 mg twice a day to 300 mg twice a day.  I would say that it is affecting her like water.  Wait, water would probably be better in that it might slightly detox her.  She is also on Abilify, which we have increased substantially.  To the point that I really don't want to go any higher.

I look back over the past 18 months, and although we have had some times that have been a little more bearable, there really has been no good time.  What's more, her maturity level has either decreased or she's just been passed up by other kids her age.  And she now has these obsessions, which are relatively new.  Not like you think of an autistic kid playing with toy car wheels, but obsessed over a sad story that she saw on the internet and trying to corner anyone she can to watch the rather lengthy video.  Making posters about the baby boy in the video, etc., etc.

So, I'm not really feeling the medication groove right now.  We're backing down off of Tegretol, increasing vit c, niacin and researching some more.  Strengthening resolve with yeast detox.  More water intake.  Trying to boost her immune system, increase her detox, support her liver.  She'll stay on a high dose of Abilify.  At least for right now.

Our psychiatrist says he's going to have to do some more research.  Always a banner day when your psychiatrist who has dealt with things like this for 30+years is stumped by your case.

So I am now reading Body Ecology by Donna Gates and What Works for Bipolar Kids by Pavuluri.  I'l let you know what I find out....

Sock It To My Girl!

My girl has some pretty serious clothing sensitivities (sensory processing disorder), and socks are a biggie for her.  Most mornings are very difficult for several reasons, but one of the biggest is getting socks and shoes on.  (We try to put socks on the night before but sometimes forget, most other nights they get kicked off in her sleep.)

And seamless socks?  They are not all what they claim to be.  At least in my girl's opinion.  We've paid a fortune for socks, usually to find out that they did not fit the bill.  Even tried those socks that are marketed toward kids who have sensory processing disorder.  The ones that claim they won't "bug ya'".  But they did.  Bug her.  And I had to send them back.

But one month before school was out this year, we found the perfect socks for her!  Tic Tac Toe socks!!!!  Very, very soft fabric and seamless at the toe.   She got no-show socks (you can get several different styles), and after the first couple of days, no more sock battles!

The first two days she had much milder issues with them....over being "too slippery" and "TOO soft", but by day three, she was used to it.  And honestly, the extra slipperiness and extra softness seemed to be remedied the first time they were washed.  

If you are having issued with sock sensitivity, maybe these will work for you, too!  

After 12 Days on Yeast Detox Again....

It has now been twelve days since we started the yeast detox diet again, and I won't lie to you.  It's been tough.  My daughter who loves bread, sugar and all things bad for you thinks that I am trying to punish her with no food in the house.  And to be honest, I am hungry.

But it will get better.  I am not craving sugar so much.  And I know that her gut is getting better.  Still... I have not found the same miraculous reaction that we found the first time on this diet.  Yet.

We started the diet again because things got so bad with my girl.  Not a peaceful, without attack moment around our house (or our car).

We resorted to another visit with our psychiatrist and another attempt to adjust medication.  We're now on our second day of increased Abilify, and when I picked her up from school today, she didn't verbally attack me for the first time in weeks.  Her eyes were sparklier, less sad and angry.

But we forge ahead with the diet because I feel confident that it will do her good.  Because I totally believe that the reason she is in this place is because of something bigger than a "chemical imbalance" in her brain.  Something is causing that imbalance.

So for now, we continue on with the diet, and we pray, pray, pray for my sweet girl who is still in there somewhere.  Our God is the God of the Impossible.  We covet your prayers for her sweet heart to grow stronger in Him, for her to learn to control her impulses, for her body to heal, for wisdom for us, her parents, to know which direction to turn.

Sticking With Us Like a Bad Love Song

So here I am after a medication change with my girl that seemed to calm down some of the irritability.  Only now, not so much.  It's bad.  Little cutting remarks, sometimes big ones, like nobody likes me, don't I know that already?  Like she absolutely hates the new color on our wall and she can't have anybody over because they would hate it, too, and she would tell them that , yeah, she hates it, her mother picked it out. And hand flicking to get me away.  Blech.

This is no fun.  I have recently come to the place where I realize that I can no longer live in crisis mode (you'd think I would have discovered that years ago), but I have to try to have some sort of calm and normalcy in the midst of this tornado.  For her.  For me.  I feel selfish.  How can I have normalcy when she continues to be in turmoil?  When it feels like she hates me?

I am realizing that after medication change and adjustment over and over, the thing that has helped her the most has been the yeast detox diet.  Which is so. darn. hard.  And when we did it before she was 8.  She is now 10.

But it's the only thing.  We've been swimming out in an ocean of much needed medications and "quick" (ha) fixes, but I have to turn around now and swim back to that island that seems so far away.  Kicking yeast to the curb.

I have my stash of diflucan and nystatin and garlic that I have been hoarding, and I'm going to be picking up a couple of more natural antifungals.  We're all going to do it (including Daddy this time).  And I'm starting with 28 days but telling them we have to see where we are after 28 days.

Off to plan the menu.  If you are doing yeast detox, let me know.  Maybe we can "rah-rah" each other.

Oh, yeah....my favorite yeast book ever... Complete Candida Yeast Guidebook.  Awesome.  (But still having to search for kid-friendly recipes.)  I've read some of the reviews, and all I can say is....often ignorance is bliss....For us, we know this stuff is real.  It worked before.  Pray for us that it works again (and that we can be more complete).

http://www.google.com/products/catalog?q=book+candida+yeast+everything&hl=en&client=safari&rls=en&prmd=imvns&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&biw=1434&bih=789&um=1&ie=UTF-8&tbm=shop&cid=6957211617341954337&sa=X&ei=2MulT9WiMYi22gWq39TfDw&ved=0CHUQ8wIwAA#ps-sellers

One Saturday in February

I am a downed horse today, so to speak.  I keep looking for answers, finding more pieces of our puzzle, running into more and more people who have similar issues in their families. 

A couple of days ago I had a revelation (about detox), and so many more of the pieces seemed to come together.  And because I have another appointment with our psychiatrist on Monday and want to argue my case about doing something other than what he last suggested, I have been rereading The Bipolar Child by Papolos and Papolos (an excellent book).  It has really helped me to get my ideas together for the appointment.

And although my daughter's extrememe separation anxiety and school issues have vanished, her irritability and oppositionality are at the ever-present level.  It always sneaks up on me, little by little, and I am once again painfully aware that she is not properly medicated.

Medicated.  I hate that word. ( I spit on you, "Medicated").

The other day I saw things in a different light for the first time and asked my husband, "Do you think that this is a 'swing' or cycle?"  Because, as I said, she is now fine with school and irritability, etc. has become much more obvious.  And nothing else has changed....no medicine, food, etc. 

And I am so darn tired.  Want to go back to sleep every day.  My oldest daughter continues to have joint pain, extreme chest pain and nausea on a fairly regular basis (pretty much monthly).  And last night it became obvious that OCD is back in the picture for her....in a big way.

And I am just not enough for this today.  I am so tired and feel so defeated.  Like I can't fix it all.  We went to a dollar movie today, but other than that the only thing I did today was lay on the couch, on the bed, turn away neighbor friends to play and feel sorry for myself.  And I don't do that.  There is so much to do that I rarely sit down unless I am in the car. 

But I just can't.  It's my party, and I'll cry if I want to and all that.....

This post is pitifully written; I am aware.  But I'm just letting it out.  Tired.  Beat up.  Worn out.  Wondering, "Am I just a bad seed?"  Because this is too much to bear.  The loves of my life....sick in a way that I can't fix.  Sick in a way that tears at every piece of our family life even as I hurriedly try to stitch it all back together. 

Today I just feel like it's being torn about so fast that all of my stitching is futile. 

Because today I think that I finally get it.  I am certain that the issues my children suffer from are the result of the toxic soup that is swimming inside of them.  But whatever the cause, symptom-wise, treatment-wise, my daughter has early-onset bi-polar disorder.  The idea that I wouldn't, couldn't entertain years ago....it's come true. 

God help me to draw near to You because I certainly cannot do this of my own strength.

I'm the Mom in the Minivan Next to Yours......

I'm a mom like so many others that you know.  I am a suburban, minivan-driving Christian mom trying to raise my four kids in a negative world.  I homeschool two of my kiddos.  I taught elementary school for nine years.  See?  Like so many of the moms that you know, right? But not really.  My life is so not normal. I have a 15-year-old daughter, a 9-year-old daughter, a 6-year-old son and a 2-year-old daughter.  And my second daughter struggles with mental illness.  "Issues" I tell myself.  I never tell myself "mental illness".  But my heart knows it.

My sweet daughter was born when my husband and I had been married ten years and had a five year old daughter.  All three of us could not wait to meet this baby girl.  My husband was just finishing his doctoral program, and I was leaving my job to be a stay-at-home mom.  Our life ahead looked sweet!

When my baby girl finally arrived, we were all over the moon in love with her. She was perfection itself!!!  All 9 lb, 8 oz. of her!  She smiled in the hospital, cuddled and snuggled and loved on her mama.  I remember holding her against my chest, squeezing her tightly and thinking, "This must be what heaven feels like..."  How could life get any sweeter?

As she grew, things only got better.  Discipline with her was easy...I could just look at her and raise my eyebrows....she so wanted to please. She had long, curly blond hair, and she had an amazing vocabulary.  She was reading before she turned 3, and we enjoyed trips to the library and the silliness of reading Robert Munsche together.  One of my favorite memories of this time with her is of the two of us standing on the sidewalk in October and watching the leaves "dance down the street".

She was so bright that when we started to notice quirkiness, we just thought, "Isn't that cute?"  Because it was!  And we thought it was further evidence of how very intelligent she was.  Really Intelligent=Quirky, right?  And we were more than okay with that!

But then came the temper tantrums if things were not the way they were "supposed" to be.  Or if they didn't "feel right".  And when I say temper tantrums, I'm not talking about the kind that ended with a nice little "teachable moment" and a spanking or time-out or anything of the sort.  I'm talking about temper tantrums that lasted for an hour or more.  Sometimes hours.  Day after day. These were tantrums in which she couldn't get control of herself.  And we couldn't get control of her, either.

She couldn't stand the way that clothes felt....any clothes.... and she was reduced to wearing knit clothes that were several sizes too large.   Even then, she would scream and tantrum and stretch those clothes out until they had holes and hanging threads.  And forget underwear! And socks!  Or any shoes except.....maybe Crocs.  All of this did a real number on her.  I remember her asking me if she was the worst kid in the neighborhood. 

Her pediatrician suggested therapy.  Then she suggested an appointment with a developmental pediatrician--the wait was 9 months long!  And all the while my daughter (and our family!) was suffering.  I found another doctor who had left "the system", and he suggested PROZAC for my 6 year old daughter.  Which I politely declined on my way out the door.

We started occupational therapy, and I started hearing terms like, "Autistic Spectrum Disorders", "Pervasive Developmental Disorder", etc.  My heart broke a little more every day.  My amazing, lovely gift from God was slipping away from me, and I couldn't stop it from happening.

Then my kind-hearted daughter started becoming aggressive.  When I look at it objectively, it's hard to blame her.  She was in agony, and her Daddy and I--the people who were supposed to take care of her no matter what--were powerless to do anything about it!  I was determined that we could "lick" this thing without medication, but finally, I had to break down and take her to a psychiatrist. I was convinced that she was going to hurt herself or someone else if I didn't. My six year old daughter.  To a psychiatrist.  Let me just say....that was a dark, dark, dark day.

We put my daughter on medication.  And not ADHD medication.  "Black box warning" medication.

And while it was the last thing that I wanted in theory, I was begging for it by the time we got it.  Our family had descended into hell.

Then there were medication changes, side effects (including an extra 20 pounds) and lots of reading for me.  We added a gluten-free, cassein-free diet (which made a big difference despite the fact that most medical professionals told me it wouldn't work and wasn't worth the effort).  We did yeast detox (HUGE difference).  Then we added lots of supplements. And then we saw more doctors and had more blood tests.

Mood disorder.  Bipolar.  Generalized anxiety. OCD.  PANDAS. Lyme.  Anti-depressants, anti-psychotics, antibiotics, probiotics, enzymes.  Leaky gut, inflammation, strep, mycoplasma.  And a tonsillectomy, too! I'm sure that I've left out some of the details, but you get the idea.

So this is my life right now.  That sweet life that I thought was waiting for us all? We're so far away from it that it doesn't even show up on my GPS.  But in my heart, it's always there in the profound sadness of what ought to be, the constant search for how to get there from here.

This life--the kids, the husband, the home, the minivan.....it was my dream.  And sometimes, like when we sit down to dinner, and my six year old son giggles so hard that he falls out of his chair or my nine year old daughter tells about going out of her way to be kind to a classmate who needs a friend....at times like that, my heart smiles a warm grin.

But sometimes, my dream is a nightmare.

On top of the super anxiety, tantrums, sensory processing issues, and did I mention hyper-irritability, there's my guilt.....Did I eat something while I was pregnant that caused this?  Was it because I didn't ask to get off of bus duty, and I breathed all of those diesel fumes?  Did I cause this by giving birth to her brother at a vulnerable time for her?  Did I miss some sign of illness or allergy when she was an infant?  Why did I give her all of those vaccines?  Was it because of the way that I parented her as a baby and hugged and kissed on her all of the time, never leaving her with anyone else?  Was it because I talked on my cell phone too much while I was pregnant with her?  Did I cause this by eating gluten when I was pregnant (I now know that I have a gluten sensitivity)?

And there's my anger....how can my pediatrician not know where to send me or what to do?????  And then how can he look at me like I'm crazy when I tell him that I don't want him to vaccinate my baby because we don't know what caused this in her big sister?   How can doctors lecture me about ineffective diets, avoiding vaccines and trying holistic remedies when they don't have anything else to suggest?  Why would people give us grief over feeding our children a special (and by the way, healthier, but not easier) diet when they know the issues that my daughter has struggled with?

There's alienation from family members who think that they could fix it all with a harder spanking, and there's trying to seem "normal" so that my precious daughter does not experience rejection from other children and adults who do not understand.  There's stress, and loads of it, because there are a million therapies to try, but none of them are free, and most of them come from doctors that aren't even in our state.  And there's exhaustion from trying to reason with my girl when she is not reasonable, discipline her for outburts that are often beyond her control and keep my younger children from copying her behavior when it is off track.

And finally, at the bottom of it all, there is loving my amazing daughter, who deals with more than any child should have to.  Loving her in a very tangible way....making sure that she gets her meds, doesn't eat a "forbidden food", goes into her classroom even when her daddy or I have to carry her in so that she doesn't give in to the separation anxiety that can paralyze her.  Reminding her that God works all things together for the good of those that love Him. And searching.  There's always more searching until we find the answer for her. 

And one more thing.  There's missing my girl.

Someone once asked me how they could help me, as my girl's often-overwhelmed mom.  I didn't really know what to say because the answer that comes to mind so easily is, "Give me another hour in the day!" or something equally "un-givable". But since then, I've thought about that a lot, and I think the biggest ways that someone can support a mom in my situation are the ways that she can support anyone in a difficult situation.

Pray for my child.  And for me and my family.  We need His strength to carry us through, and I need His words to show her how much He loves her.  Even though He has not delivered her.  Yet.


Be there.  I mean, really be there.  Don't avoid me because you don't know what to say.  If you don't know what to say, say that.  Live life with me in spite of the difficulties.  Be you.  Be there.

Don't try to have all the answers--in fact, most moms in my situation have so many answers floating around in their heads that they haven't had time to sort through them all yet.  I may or may not want to brainstorm.  Follow my lead. Give suggestions only if asked.  Otherwise, just be there.  Hang out.  Have fun. Fun is important.

Obviously, don't compare children. I used to lay awake at night thinking about what I could do to help my children be faster swimmers, the best spellers in class, the best ball-catchers.  I'm so over it.  Some days I just worry about how I can help my girl get clothes on.

Encourage me in my efforts.  It may be hard to understand why I would not vaccinate younger children or why I would pursue a certain kind of therapy, but I/we (my husband and I) are not making decisions based on whims.  For each avenue that we pursue, we've weighed out the consequences, calculated the costs and forged ahead.

Acknowledge the issue.  While I wouldn't want anyone to make more of it than it is, it makes me feel like people think I'm crazy when they discount what I tell them.  For instance, people have told me that she'll probably outgrow it--it's a phase.  Or that she's perfect when she's with them.  Or that she doesn't seem like she's "having trouble".  (At this point, I bite my tongue instead of telling them that she seems fine because SHE'S ON SOME POWERFUL PSYCHIATRIC MEDS!)


Play.  Moms like me live a stressful, worry-filled life.  (Will she have to take these meds forever?  Will we find a nutritional answer?  How will we pay to find the answer?  Will she be able to sustain relationships, have babies, take care of herself?  Will my other children develop these "issues"?)  Like most people going through a hard time, we need to forget about worrying for a minute.  We need to laugh and play.

Don't judge.  Right is right, and wrong is wrong; I'm not talking about not acknowledging that.  I mean that people don't always know everything that's going on. Like I mentioned, I used to be a classroom teacher.  I was a good one, and I was good at keeping control in the classroom.  If I saw a child misbehaving at school or anywhere else, I always thought that I could fix it.  My child would never behave that way.  But now?  Now I realize that sometimes kids misbehave because of slacker parenting or poor discipline techniques, but sometimes there is a deeper issue.  (I cringe at how arrogant I used to be about parenting.)

And this might be the hardest thing, but don't tell me that I shouldn't have to deal with these things.  I know that it might seem supportive to say that, but frankly, it just gives me license to have a pity party. Maybe I shouldn't have to deal with these things, but this is our life.  This is my girl's life.  And I will never give up on her.  For some reason that I cannot begin to fathom, God must have thought that I was strong enough to handle this.  And I can't afford to feel sorry for myself.  Maybe I'm the only one who feels this way; I don't know.  But I know how it works in my life.  It works much better to encourage me in the journey.

At the end of this post, I'd like to tell you that you will probably rarely run into a mom like me....that this is a "just in case" post.  But I feel certain that you will run into more and more moms like me as time goes on.  Perhaps you will become a mom like me.  Because kids who don't neatly wear a label but have serious "issues"...there are more and more of them.



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To read more of our story, visit http://www.findingmylittlegirllost.blogspot.com/

If you or someone that you know is struggling with these issues, please feel free to contact me at tu4two@yahoo.com.