Wednesday, April 18, 2012

How to help a friend who...has a child with a mental illness

From the How to Help a Friend Who... series.

http://amdunlevy.blogspot.com


I spoke at a retreat in November on the topic of suffering and afterwards, a couple of moms shared about what a private hell they lived in because they had children with mental illness.

One mom spoke about how much she dreaded going to church because of the horrific lies her  beautiful, charming daughter with narcissistic personality disorder had told other church members about her and her husband. Another mom sobbed, "There was a child on my street who had cancer, and the whole community rallied and brought them meals, and gave support, and I just kept thinking, my child has an illness that is just as difficult and just as deadly as cancer but no one is helping us at all!" 

It broke my heart, and opened my eyes.

Please welcome my friend Lynn, who has dealt with this personally.


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.  My three daughters are ages fifteen, nine and two, and my son is six.  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. Because my nine year old daughter struggles with mental illness.

"Issues" I tell myself.  I never tell myself "mental illness".  But my heart knows the truth.

My sweet daughter was born ten years into our marriage when our first daughter was five.  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 often lasted for hours.  Day after day. 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, so 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! Or 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 nine months long!  All the while my daughter (and our whole family) was suffering.  I found another doctor who had left "the system", and he suggested PROZAC for my 6 year old daughter.  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.  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 broke down and took her to a psychiatrist because 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.  That was a dark, dark, dark day.

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

And although 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 a yeast detox that made a HUGE difference.  We added lots of supplements. 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.  Except in my heart, where it's always there in the profound sadness of what ought to be, as I constantly search for  the way to get it back.

The kids, the husband, the home, the minivan - this was my dream.  And sometimes, like when we sit down to dinner, and my little 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.

In addition to the daily struggle against super anxiety, tantrums, sensory processing issues, and 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 at school, 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?

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 (much healthier, but much more difficult) 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.

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 who 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 trying to prevent my younger children from copying her negative behaviors.

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 for me.  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 give me all the answers. Most moms in my situation have so many answers floating around in our heads that we 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 lie 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 my husband and I are not making any decisions based on whims.  For each avenue that we pursue, we've weighed the consequences, calculated the costs and cautiously 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.  Some 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 with me.  Moms like me live a stressful, worried, what-if-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 me.  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. When I was a classroom teacher, I was a good one, great 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 unfathomable reason, God must have thought that I was strong enough to handle this. I can't afford to feel sorry for myself.  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.

To read more of our story, visit Finding My Little Girl Lost.

If you or someone that you know is struggling with these issues, please feel free to contact me at tu4two@yahoo.com.  We're all in this fight together!

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