Delighted

My bloggy-friend Anymommy just saved the day.  I have been back and forth on what to write, so I decided to surf around for a little inspiration.  Should’ve known I could count on Any.  I highly recommend you go there, but don’t do it until you’ve read this, because I promise once you begin reading her phenomenal writing you’ll hardly come up for air, much less return to read my paltry entry.  Yesterday she asked a question that leads me right where I need to be.  “What do you do to show your children you are delighted in them?”

I am going to take this one step further.  Things have been a mite bit heavy at Funny Girl headquarters, so if you’ll indulge me, I’d like to tell you all the ways Sweet Pea delights me.  In spite of her challenges, she is an absolutely amazing kid.  Here’s are a few of the reasons why:

She’s funny.  REALLY funny.  I like to think she inherited that from me. 

Girlfriend can groove.  I’m serious.  She like to shaky-shaky.   (Must’ve inherited that from Hubs.)

She loves to sing.  I love to listen to her sing.  She is usually a smidge off-pitch due to her hearing loss, but it is one of the most beautiful sounds I know.

Speaking of her hearing loss, she is an almost perfect lip-reader.  Unfortunately she forgets that I am not nearly as good at it as she is, so she gets frustrated when she’s trying to talk to me in church and I don’t understand her.  Give it a try.  You’ll be impressed.

Also, she is an amazing speller.  In general, people with hearing loss have a very difficult time with reading/spelling due to its relationship with sound.  She never studies for her spelling tests and she almost always get a 100.  Spelling is important to me.  I think things should ALWAYS be spelled correctly.  So this delights my nerdy side.

Despite her social difficulties, she is unbelievably generous.  She literally tried to give a friend the shirt off her back when her friend didn’t have the right clothes to wear on the field trip to the Symphony.   Today at lunch she insisted that we buy a cookie and divide it into four parts for she and her three friends.  Love it.

 

Now, how do I delight IN her?  That’s somewhat trickier, isn’t it?  I suspect most parents of 10 year olds would agree that finding ways to encourage our children while still being “cool” is a daily challenge.  And I certainly cross the line into uncool on plenty of occasions when I’m just trying to do something nice for her. 

Case in point:  She is having a growth spurt and has outgrown her belts.  I offered to go into my closet and let her borrow one of mine.  Now let me be clear; these are cool belts.  We’re not talking dorkville.  Anyway she looked at me, cocked her head, and said “I am NOT going to wear my mother’s belt.”  I knew right then that she does not see trendy, fashionable Funny Girl.  She sees a mother.  An old woman who is neither trendy nor fashionable.  (Note:  this didn’t stop her from borrowing my silver ballet flats for church today.  Just saying.)

ANYHOO…things I do to delight in Sweet Pea:

Every morning I crawl into her bed and we snooze together.  She likes to wake up slowly (let’s face it, so do I) and I always hope those minutes of snuggling will fill her tank for the day ahead.

Each afternoon I meet her at the corner and carry her backpack home.  It is my way of literally shouldering her load.

Each evening I sit in her bed and read aloud to her.  She is an avid reader, and can read much faster alone, but she begs me to do it and I indulge her, sometimes for up to an hour. 

I try to give her little looks:  a smile, a wink, a thumbs up, the OK sign…she doesn’t want to hear me talk, but she loves knowing I approve. 

My favorite right now is the kiss on her head.  I don’t have to say anything.  Just a pause, a kiss, maybe a squeeze on her shoulder. 

 

May we all find ways to delight in each other this week.

Please understand that she is not herself

One of God’s greatest gifts to me in this journey is the friends He has given me who understand my trials with Sweet Pea.  I have three close friends who have children with issues similar to Sweet Pea’s.  So similar, in fact, we often comment that these girls could all be sisters.

Of these three phenomenal ladies, one is a recent reconnection.   We haven’t seen each other since high school, but she found me on facebook, started reading my blog, and quickly contacted me about the incredible resemblances in our daughters.   We have become cheerleaders for each other, pushing ourselves through the tedious afternoons and difficult nights.  Sometimes we offer wisdom, and other times we just recommend the perfect cocktail, but at all times she gives me strength, and I hope I do the same for her.

One of the things she and I talk about the most is the judgment we perceive from those around us.  The looks at school, the store, the gym, the neighborhood.  Mental illness is an “invisible disability”.  You would never look at a picture of our beautiful children and suspect there was a problem.  But the sad truth is these children are sick.  Their brains don’t work like everyone else’s; the chemicals are imbalanced, the neurons misfire and all hell breaks loose. 

Another of these amazing ladies recently gave me a selection to read from a Miss Manners book she had borrowed from the library entitled Miss Manners’ Basic Training:  The Right Thing To Say.  (Don’t be scared – this isn’t one of those “your kid needs manners” stories.)  The section was from the chapter entitled Covering for Others.   The author’s intent is to address issues with an elderly person who has dementia, Alzheimer’s, etc., but my friend suggested it applied to our children as well.  I am going to quote directly because I think it’s the most effective (and also I’m too tired to paraphrase):

Anyone close to a person with such a problem is going to spend a lot of time apologizing…The key phrases are “She doesn’t really mean it,” “Please understand that she is not herself,”…”It’s not that you did anything – it’s just the way she is now.” 

The apologies made to oneself (the caretaker)  – “I know she doesn’t mean it”…”It’s not really her speaking” – are the hardest to accept.

Even as the mother of a child with an invisible disability it can be hard for me to remember that this isn’t her fault.  She isn’t doing it on purpose.  If she could be “normal”, she would.  I know she would rather be calm and happy than fractured and raging.  It’s easy to blame her though.  It’s so easy to say “if she would just…” and then fill in the blank with all the million simple things she could do to change her situation.  But that’s the point, isn’t it?  She can’t change it because her brain doesn’t always function like it should.   It’s more than just ADHD. 

My child has mental illness.

Please understand that she is not herself.

I’ll Do It Later

Sweet Pea hates homework.  Despises it.  Loathes it.  I encourage her, cheer her, reward her, help her, but she still hates it.  I tell her not to procrastinate.  Let’s get it done!  I say.  Then we can do other things that are fun!!

Dear Pot, meet Kettle, aka Funny Girl. 

I have homework for our therapy tomorrow and I haven’t even started it.  I’ve thought about it, but I haven’t done it.  Hubs called today to confirm the assignment.  He’s done.  I’m not.  Because I’m a procrastinator.  The worst kind of procrastinator.  I’d be happy to do it in the waiting room tomorrow morning. 

BUT, since writing is a confession of sin, I figured I would confess it and then own it.  So, I admit it.  I put things off.  And now I’m going to do my homework, right here in front of God and everyone. 

The assignment:  Write your house rules, noting which ones are negotiable and which are non-negotiable.  Then write positive and negative consequences that you currently use and whether or not they are effective. 

Here goes.

Any minute now I’m going to start typing.

I’m getting there…

UUUUGGGHHHHHHHH!!!!

Okay.  The House Rules:

1.  Safety First.  Stay in the house unless you have permission to go out.  No hitting, kicking, biting, etc.  No throwing items which can break things.  You may not hurt yourself or others.  NON-NEGOTIABLE.

2.  Take Medicine when it is given.  NON-NEGOTIABLE.

3.  Wear Hearing Aids to school.  NON-NEGOTIABLE.

4.  Do your homework each afternoon.  I am here to help you.  If we get it done then you can play.  If you don’t get it done, you do not get screen privileges or friend time.  Negotiable.

5.  Speak with Respect to mom, dad, and friends.   Speak calmly and we will listen.  If you need to scream, go in your room and close the door.  (Unfortunately negotiable, as there are plenty of times where we are all yelling at each other.)  If you need help with a friend I will gladly assist. 

6.  Respect other people’s property.  If something is not yours, please do not touch it.  This includes mom’s purse, dad’s wallet, mom’s phone, etc.  If you need something that is not yours, please ask.  Negotiable.

7. Please Obey our instructions.   We don’t ask much, so when we ask you to do something, we need you to do it.  We all have responsibilities that we don’t like, but we have to do them.  If you feel that an instruction is unfair or if there is a reason why you can’t do it right then, calmly ask if we can discuss it.  If you ask calmly, we will say yes.  We want to discuss, not argue.  If you argue we will ask you to go to your room until you are ready to discuss instead of argue.  Negotiable.

Positive Reinforcers: 

Earning something specific and tangible works best.  (ex:  iTunes gift card, My Meeba, webkinz, etc.)

Earning a privilege can work but can also backfire (ex:  sleepover with friend but then sleepover goes bad)

Negative Reinforcers (Consequences): 

 No screens (I think this is harder on us to enforce than it is on her to withstand)

No outside playtime (Hard b/c lately no one is available to play anyway)

“Grounded” – never works; too broad

Spanking – never works; only increases the behavior

Safe hold – necessary but doesn’t work

 

I may come back to this later tonight for some editing.  We’ll let it set for a bit and see how I feel about it.  Anyway, it’s DONE.   (Editor’s note:  I came back and added #6 after an oh-so-fun struggle over my iphone.  Geez.)

Now I can go do something fun!!

Fear

I am an optimist, but I am living with alot of fear right now.  When I boil it all down, it’s fear of failure.  Fear that we have failed her, which makes us failures ourselves.  Fear that she will be a failure.

It is so hard for me to be hopeful about our future.  The research is grim.  Teens with ADHD are 2-4 times more likely to have a car accident, twice as likely to have abused alcohol in the last six months, and three times more likely to abuse drugs other than marijuana.  They are 10 times more likely to get pregnant, and 400% more likely to contract an STD. 

You can see why I’m scared.

Compounding the issue, Sweet Pea has a lot more going on than just ADHD.  She has a significant problem with mood regulation, meaning she reacts to and exhibits her emotions inppropriately.  She has also developed almost paralyzing anxiety (which looks like defiance…go figure).  She does not have many friends, because 10 year olds aren’t likely to be oh-so-patient with a kid who is this different.

And then there’s our marriage.  Hubs and I are under immense pressure at home.  The air is toxic and it is hard to breathe.  We are working daily to keep our relationship healthy but it is nearly impossible sometimes.  The research supports this:  Married couples with a child with ADHD are twice as likely to divorce by the time the child is 8 years old than couples who do not have a child with ADHD.  The stress Sweet Pea brings to our home is incalculable.  It’s also highly unpredictable, so disappointment often hits us when we least expect it.  We make a plan, it fails, we feel like failures, we get angry, we yell, we go to our corners and calm down until it starts again.

Those of you who know me and Hubs are probably thinking “but y’all are so great together…you know God has a plan for y’all…if anyone can make it, you can…”

Let me be clear.  It is my opinion that no matter how perfect, no matter how prepared, no matter how supported, no matter how faithful, no matter whatever, we are not equipped to withstand this pressure.  It is a daily battle so painful I can hardly stand it.  I have tied my rope and I’m hanging on, but there’s not much that is helping at this point.  It is like having a child with cancer and the chemo isn’t working.  And then knowing that there’s no end, because the cancer isn’t going to kill her, it’s just going to ravage her life.  Yes, there are moments of hope, moments when the meds seem to be working, but it always rears its ugly head again.  And again.  And again.

I realize that research isn’t everything, and that she could defy the odds.  I have said it before and I’ll say it again.  WHEN God decides to work a miracle, she will get better.  I believe He can do it, and for whatever reason He is choosing not to.  I’m mad, and He knows it.  I still trust Him.  He knows that too.

Until then, it’s back to the foxhole. 

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BTW, if you didn’t watch this clip yesterday, it perfectly describes my battle with fear right now.  The girl is portraying the fearful; the guy is her fear.  http://www.youtube.com/watch?v=po417XoP0O0

 

Life is Pandemonium

I can’t write.

I go to sleep at night composing blogs, but when my fingers hit the keyboard they freeze.

It’s too painful, it’s a mess, it doesn’t make sense…it certainly doesn’t fit together neatly into one little blog.

Her brain is so sick.  And the new medicine isn’t working.  I lost count a long time ago of how many different meds we’ve tried.  Some don’t work at all, some work for a while and then quit working…this newest one threw her into a complete tailspin.  She’s up and down and all over the place -at home, at school… The psychiatrist said to stop the med and let it get out of her system before we start something new.  So that’s 48 hours of sheer torture.  No telling what she’s going through at school right now.  I stayed home today so that I could get bring her home if things got really bad.  So far so good, but there’s still an hour to go…

And the timing of all this couldn’t be worse.  I’m in rehearsal every evening, so hubs is on duty for the worst part of the day.  Bless his heart.  He’s hanging in there like a champ but the reality of her illness is taking its toll and I feel so guilty for leaving them.  I realize theater is my job, and we need the paycheck, but there’s not much comfort in that when I’m driving away each night.

I say a line in my play that keeps going through my mind:  “Exactly, Sylvia.  That’s not the life I want for my daughter.”

This isn’t the life I want for her. 

And yet there’s nothing I can do about it.

Great Expectations

I am having a hard time pressing the *publish* button.  This is as brutally honest as I’ve ever been, and I’m very hesitatant to put it out there.  But this is what’s on my heart and in my mind, and maybe by publishing I’ll get some relief.  Please don’t feel obligated to comment; there really isn’t anything anyone can say that will make this any better. 

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Well, I’ve done it to myself again.  I spent the last month of the summer gearing us up for a GREAT school year…”Honey, you’re going to love fifth grade – new teacher, new books, and science!!  This year you get to do SCIENCE!!!  And you’ll have different friends in your class so you can start fresh.  Isn’t it GREAT???” 

No mom, it isn’t great.  Now can you stop talking so I can hear the Disney channel?  Thanks.

But I didn’t hear her.  I just kept repeating myself over and over in as many fun, enthusiastic ways as I could come up with…surely with enough encouragement and prayer and preparation I could MAKE this a great year, right??

Wrong.  Wrong-o.  Wring-wrang-WRONG.

She started Monday morning:  cute outfit, stylish bookbag, accessories galore, and a yummy lunch…with cookies. A whole bag of mini Oreos, for pete’s sake!   I mean, what more could a kid want?  But 3:00 rolls around and she rounds the corner  unleashing the fury that is some manner of demon, disguised as my tween.  NOTHING went right.  NO friends.  NO fun.  And it’s HOT.  “At school?”  No mom.  Geez.  It’s hot outside!!  Duh.

Oy vey.

Every afternoon it’s been the same, and she doesn’t even have homework yet.  I can only imagine the joy that will fill our household next Monday at 3:00, when she has a bag full of math and spelling to do after school.

Here’s the thing:  I shouldn’t be surprised.  This happens every year.  EVERY year.  And yet I still expect that if I meet her with a smile and a plateful of cookies she’ll come in the door with a smile and a hug and tell me all about her day.  I think if I can just encourage her enough, speak enough postitive words, set her up for success and not failure, then things will change.  She’ll magically turn into that kid.  But it’s just never gonna happen, is it? 

Because that’s not my kid.  My kid is struggling.  Struggling to be ANYTHING but angry at the world, angry at me, angry at hubs.  She’s ticked, and she’s having a hard time getting past it.  And it’s ugly…two-year-old-tantrum-ugly.  Beelzebub ugly. 

Why her, God? 

 Why us?

Much of the reason I haven’t written this summer is that although I sometimes write from a place of pain, there is usually plenty of hope mixed in.    But I’m losing hope.  I am convinced that she could get better if God chose to work a miracle, and He’s just not choosing to do that right now.  For whatever reason, and believe me I have NO idea what that reason could be, He is choosing to let us walk through this wilderness.  It hurts.  It’s lonely. It’s just plain miserable.

Honestly I don’t know how much more we can take. 

Our great expectations are turning into dashed dreams.

Mommy of the Year

I picked Sweet Pea up from school yesterday and almost immediately noticed that something was amiss.  She was unfocused and talking non-stop.  I checked her assignment book to see what homework hour was going to be like and I found a note from her teacher explaining that she hadn’t been on task all day, and as such, had three extra assignments to do at home.

Ugh. 

I sat down with her to start the first assignment and it was literally impossible for her to stay in her seat.  She was all over the place, and I was getting more and more frustrated.  It took a few minutes, but then it dawned on me…

Did I give her medicine this morning?  I couldn’t remember doing it…I walked through the morning routine in my head and I couldn’t remember giving it to her.  I called Hubs and guess what?  He didn’t give it to her either.

Yep.  We sent our child out the door without the ONE THING she needs to get through the day successfully.  Imagine sending a diabetic child to school without their insulin.  That’s basically what we did.

I’m pretty sure that sealed my place as Mommy of the Year.

This is what I’m talking about

I was talking to a couple of friends yesterday.  These girls both know Sweet Pea’s situation.  Anyway, we were talking about two year olds and their crazy, tantrum-throwing ways.  I joked that I had a 70-lb two year old.

Then my friend described her now-seven year old when he was a toddler.  She said he threw terrible fits, kicked through walls, etc.  So I said “Thank goodness he outgrew that stage.”  And her reply stung.  She said “Well, I don’t know if he outgrew it.  I like to think we just did something right.”

In other words, GOOD parents can change that kind of behavior in their kids.

And since mine still displays that kind of behavior, she clearly didn’t have that kind of GOOD parenting.

Now this is a friend who has stuck her foot in her mouth many times before.  I did not respond in anger; I didn’t really respond at all.   She has no idea how badly her comment hurt me.   The time will come when I can gently help her understand how her off-the-cuff remarks are so painful to Hubs and me.  But it’s not the right time yet.

I laid in bed last night, after working with Sweet Pea for two hours to get to sleep, with the devil whispering in my ear:

She’s right, you’re not a good parent.  You could’ve and should’ve and you didn’t and now look what you’ve got.

And then I told the devil to SHUT THE HELL UP!!

That Face, Part Deux

If you haven’t read Part One of the That Face series, please start by scrolling down and reading it.  Part Two usually makes more sense if you’ve read Part One.  Chronology seems to work like that.

I’ve thought about writing this post before, but it never came to fruition, mostly because I’m really baring my soul and I think it sounds a bit whiny.  But my dear friend Patrick’s comment yesterday reminded me that I need to follow up with a little bit more information, as education is the only cure for ignorance.  And that’s worth a tiny bit of  whine, right?

There are two analogies that I often use when speaking with people who don’t understand ADHD or the way we’ve chosen to treat it with Sweet Pea.

The first is that ADHD is caused by a chemical imbalance in the brain, much like Diabetes is caused by an imbalance of insulin in the pancreas.  One would never consider NOT treating a child with diabetes, yet many people are quick to judge when parents choose to use medications to treat their children’s ADHD.  This is a disease, a condition, a disability even.  It is not the result of bad parenting.

Furthermore, as one would never “punish” a diabetic child for dropping their blood sugar, one cannot punish ADHD out of a child.  YES, behavior modification is necessary, and extremely helpful.  There must be consequences for any child’s behavior.  But making the assumption that “that child just needs a good spanking” is ridiculous.  And in my daughter’s case, I often wait until we are at home to administer a consequence, so please don’t assume that just because a mom doesn’t yank her child up by the arm and drag her out of a situation she isn’t going to deal with the situation at all.  We’ve found that Sweet Pea loves an audience, and will often behave worse if we try to deal with her behavior in public.  So we wait until we’re home, where she can scream and writhe to her heart’s content WITHOUT the social stigma to boot.

The other analogy is one I read in a book about parenting diffiucult children.  No matter how hard I try, I’m never going to play basketball like Michael Jordan.  No matter how badly I want it, it isn’t going to happen.  You could beg and plead with me.  You could offer me a million dollars.  You could yell and scream at me.  You could take away the things I like.  You could even physically hurt me.  But I’m still never going to play basketball like Michael Jordan, because it’s not in my genes.  Likewise, the child with ADHD cannot be yelled, or spanked, or bribed into perfect behavior, because it’s not in their genes.  Everyone wants their kid to be the “Michael Jordan” of childhood – the smartest, the best behaved, the most polite…but all the reinforcements in the world, positive or negative, aren’t going to make it so.   Please don’t misconstrue these words to mean that I don’t think we should aim for good behavior.  We must.  Our children are growing up in the same world as everyone else, and there’s no card that you can flash to get them off the hook just because they happen to have ADHD.  But out methods are different.  And the results may take MUCH longer to see. 

So give us time…lots of time.  See that we are working on it, and give us credit for that, instead of judging us and our children solely by what you see in a snapshot in time.  Know that when our child misbehaves and we take that big breath it doesn’t mean “oh, our Sweet Pea, she’s so cute”; it means “oh, tonight is going to be awful because I’m going to have to give her consequences and she is going to rage and we’re all going to be miserable but it has to be done…one more night down the drain.”  And know that we already feel like terrible parents, we don’t need any help with that.  We’ve been told by untold numbers of well-meaning folks that we should have done this, or should have done that.  We  are perfectly capable of translating the off-the-cuff comments about our daughter into the painful jabs to the gut they truly are. 

We need friendship.  We need encouragement.  We need a listening ear.  We need laughs, and lots of ‘em.  We need a running partner, or shopping therapy, or a skinny vanilla latte.  And margaritas…we definitely need margaritas (frozen, no salt please.)

Speaking of margaritas, here’s to my daughter, the girl with That Face.  Here’s to her unyielding spirit, her determined will, and her sheer spunk.  And heck, here’s to her freckles too.

Salud!

That Face!

I was reading my friend Anymommy’s blog today when I noticed a couple of ADHD posts highlighted on her sidebar.  I clicked on the first:  Issa’s Crazy World,  and found a beautiful post about her daughter.  It turns out some (insert bad word here) left a nasty comment on her blog, telling her she was poisoning her child for giving her meds to treat her ADHD.   In an attempt to shed light on the realities of life with children who have ADHD,  another blogger named Insta-Mom encouraged those of us who have children with ADHD to post a blog about the Face of ADHD. 

Here’s mine.

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This is the face of ADHD.

She is so many things, not the least of which is totally gorgeous, thanks to her birthparents who gave her their lovely skin, thick hair, and darling freckles.  She is funny.  REALLY funny.  She has comic timing for pete’s sake.  I LOVE her sense of humor.  She is ridiculously smart; in fact, this seems the perfect time to announce that our Sweet Pea will be one of 16 students competing in the school spelling bee.  Can I get a what-what?!  She is athletic, something I am not, so I appreciate it all the more.  She is fearless – absolutely unafraid of risk.  She will experience so many more things in this lifetime thanks to her willingness to try anything and everything.  She speaks her mind…alot.  When she thinks she’s right she is absolutely CONVINCED that she is right and she will not be swayed.  I’m hoping this will be an added advantage when someone offers her crack.  She can negotiate any situation; I’ve often said we should send her to the middle East to help with the conflict there, and considering the events of late it looks like maybe I should go ahead and buy her a ticket.  She is beyond creative.  I love how her mind works completely OUT of the box. 

But you may have never met this side of my daughter.  Perhaps you passed us at the grocery store while she was melting down over “needing” ice cream.  Or perhaps you watched her in gymnastics when she couldn’t keep her hands off the little girl next to her.  Or maybe you were in line with us at Disney World, when she couldn’t stop swinging on the bars, even though we told her to stop over and over again.  You’ve never gotten to see the beautiful side of her, you’ve only seen the ADHD.

I’ve written many times about the difficulties of having a child who is different.  We’re the ones who don’t get invited to birthday parties or sleepovers.   We’re the ones climbing on top of the monkey bars, just to see if we can.  We’re the ones having a tantrum on the sidewalk the minute we walk out of school because the stress of holding it together all day is just too much.  And I say “we” because it’s all of us who feel the stigma.  I see the looks.  I get the nasty vibe.  I hear the conversations when we’re walking out of a room.  My husband does too.  And I know Sweet Pea does, because she tells me.

It hurts. 

So if you have a child with ADHD, or any difference, you have my greatest encouragement to keep up whatever you’re doing for them.  All we can do is our best, whatever that is. 

And if you’re fortunate enough to have children without any differences, may I be so bold as to ask you to teach them about empathy and understanding?   Not just globally, but specifically.  Model it by loving on your kid’s friends who are different.  Give them compliments, or hugs.  Invite them over for a short playdate, even if it’s hard.  And when your child comes home saying “So and So got in trouble again today” see if your child can think of a way to be that child’s friend.  I promise they need one. 

And if you’re in the room when a parent is having difficulty, give that mom a little smile or a wink of encouragement.  And then don’t chime in when they leave and everyone starts tsking and speculating and patting themselves on the back for being such great parents because they don’t have kids like THAT.  Say a prayer for that mom, or send her good vibes, or whatever you do.  Maybe ask her to coffee later.  Because I promise, she needs a friend too.