Adding to the list...

I love lists!  Lists are my friends.  There is the contact list on my phone, which, if lost, would mean the end of my ability to connect with my real friends.  There is the list of books I've read; it makes me feel so impressed with myself when I look at the number of books I've read (I can't admit to it making me smarter or anything; many of the books are pure entertainment and not for enrichment).  Of course, I have to keep the list so I don't forget if I've already a book or not.  I can be very forgetful.  There is the list of books I am planning on reading that feels like a list of mini-vacations, escapes from my daily reality.  I don't even mind my "to do" list.  Even when it is long, there is something remarkably satisfying about crossing things off when tasks are completed.  Granted, sometimes I have to put "take a shower" in the first slot, just so I can feel a sense of accomplishment every day.  No joke.

There is one list that I don't particularly like:  the list of K's diagnoses.  Until last week, we were holding steady at Mixed Receptive/Expressive Language Disorder, Auditory Processing Disorder, and Sensory Processing Disorder.  We have spent countless hours in evaluations and therapy over many, many years to work with these issues.  We have spent countless hours ruling out other things, as well.  That was all well and good.  I felt like I had a pretty good handle on my girl and how to help her and we've been moving along with positive, albeit slow, progress.  Until last week...

After her bout with anxiety in the end of May, our pediatrician wanted her seen by a child psychiatrist.  That appointment was a week ago.  The result?  More things to add to the list.  His certain diagnosis is Obsessive/Compulsive Disorder (OCD).  Possible additions are generalized anxiety disorder - a likely addition, actually - and he won't rule out autism spectrum or ADD.  Really???  We've had K evaluated for both of those on numerous occasions and thought we had laid those to rest.

I don't love this list.  I find this list to be overwhelming, both emotionally and mentally.  I can't speak for other special needs parents, but for me, situations like this can overwhelm me into complete inaction.  In other words, I know I need to be calling the insurance for a list of providers to get K into cognitive behavioral therapy for the OCD.  It took me 3 days to make that call.  Once I got the list, it took me 2 days to call even one person.  I left messages for 2 and have yet to make any more calls (although it is on my to do list for today).  Yes, I know I need to get this done because K needs it.  I understand that waiting around doesn't help her.  I get this, but still, there is some part of me that hopes that if I ignore it, it will just go away.

It won't.  I know this.  I will suck it up and make the calls, even though I really don't want to do it.  It makes the situation real and permanent - another something that I, as her mother, can't fix for her.  I can't kiss it and make it better.  All I can do is put the pieces in place and make sure she gets to the appointments so someone else can fix it.  Most of the time, I can accept that by doing that, I am doing everything that I can do for her.  For now, though, it is just simply overwhelming and leaves me fighting those feelings of inadequacy and guilt - wasted emotions, I know, but they are still lurking beneath the surface anyway.

I know there will be people who read this who won't understand why I just don't get on with it - make the calls, make the appointment.  I don't think I can adequately explain why that isn't as easy as it sounds except to say that situations like this do not have a "quick fix" so if it takes me a little bit longer to deal with it, then so be it.  K will get what she needs.  I am doing the best I can, even if it is not the same "best" as somebody else.

So, our journey continues with a new bump in the road.  I trust that something meaningful will result from this bump; that there will be some new life lesson learned.  I will have to focus on the positive possibilities so I don't get bogged down in the daily difficulties.  With all that K works through, can you imagine the possibilities for her as an adult?  If we are built out of our life experiences, she will have a breadth of self-understanding and a depth of skills and tools that most adults can't even begin to access. We may be in the trenches right now, but the payoff in the future has unlimited possibilities!

Can I get a diagnosis over here?

I think I need an evaluation.  On any given day, I'm thinking about my kids roughly 19 hours of the day.  I do try to sleep for the other 5 hours.  Sometimes I even log in a solid 6 hours.  If it's been 7, I hope someone will check to make sure I am still alive.

Because I have a great mom who worries about me (a task that I'm quite sure is Chapter One in the Mommy Manual), she lovingly suggested that I take some time away.  I think she said something along the lines of, "I'm worried about you.  You need to take some time for yourself."  Subtle.  To which I think I responded with a look of total confusion and asked her to repeat herself.  Time for myself?  What is this magical thing of which you speak?

Given this amazing opportunity, I jumped at the chance.  Of course, planning such an auspicious event is almost too complicated to make it worth it.  K has started summer school which means that carpools needed to be arranged.  Both girls needed somewhere to go or something to do during the afternoon.  Lord knows I needed to do laundry.  Mapquest got a workout from me, too.  I ran out of time and left the refrigerator practically bare (sorry, Honey).

Planning was done and we set out on our 2 day adventure.  Normal people would leave their work thoughts behind by the time they hit the freeway.  I think I finally started to sort of unwind about 8 hours after we left home and into my first margarita.  

I'd like to tell you that I was able to just not think about my responsibilities for a couple of days.  I knew that all was well at home and that everything was under control and the world was not going to come to a screeching halt without me there to keep it turning.  The truth is, though, that I found it impossible to totally disconnect from my constant thoughts about my family - probably due to the fact that S kept texting me.  In the interest of full disclosure, I not only thought about, but spent a great deal of time talking about, the impending decision about K's 5th grade school year.

I keep thinking about one of the hallmarks for many kids with autism diagnoses - the extraordinary ability to have a huge wealth of knowledge about one particular subject.  Okay, yes, some describe it as a fixation.  What does that mean for me?  If there was an evaluation for parents like me, what would our diagnosis be?  Getawaybic: The phobia of being away from one's children?

There is a cure, though, I think.  One must get away more often...preferably in the company of other adults...accompanied by good food and good beverages.  When do we leave?

Camping? Let me call the hotel...

Of all the adventures I have shared with my girls, Girl Scout camp is one of my favorites.  Let me clarify:  Girl Scout camp with S has been one of my favorites.  The summer between 2nd & 3rd grade, she and I went to a special session at Girl Scout camp designed for the girls to bring an adult camper with them.  This is my kind of camping!  All I had to do was pack our bags and get us there.  From the minute we arrived, everything was planned for us.  We ate when they told us to eat, we rode horses when they told us to ride, we sang songs, made s’mores, paddled canoes - all when they told us to!  I didn’t have to plan a thing.

After 2 consecutive years of this, I couldn’t wait to take K!  She was 7 years old, heading into 2nd grade and I thought she'd really enjoy it.  I roped her Godmother into attending with us, packed the tent and sleeping bags and made the trek to camp.  K was really excited, too!  After all, she’d spent two years watching me take S and any self-respecting little sister will want to be included, too.  It’s in the handbook.  Monkey see, monkey do.

Our arrival at camp was marked by excessively hot temperatures.  Triple-digit temps, 4 days, 1 shower allowed (not per day, just one in total).  Also, there isn’t any ice at camp, so while we had our water bottles, it just isn’t quite the same to try to quench your thirst with lukewarm water.  Not exactly an auspicious beginning.

By the time we were getting ready for bed on that first day - just a few hours after our arrival - I was ready to go home.  I looked at K and realized that in all my excitement, I forgot the Girl Scout motto:  Be prepared.  I forgot that she would be on complete sensory overload and therefore, at the edge of total meltdown at all times.  She’s never been one to give in to tantrums, but once she’s overstimulated, she has a hard time sleeping and will easily tune out everything around her which can boil down to a safety issue at places like camp.  Sure enough, we lost her for a while on the 2nd day.  She wouldn’t participate in her dancing class and then when it was over, cried buckets of tears because it was over and she didn’t get to dance.  She barely ate - the food was foreign to her.  She loved riding the horse, though, and enjoyed swimming in the “refreshing” swimming hole (refreshing = frigid cold water since it is nothing more than snow melt, but with triple digit heat, it was actually refreshing).  Her Godmother handled most of this as I spent my time with S.  God bless her Godmother.

At the end of our 2nd day, we got to take our shower.  Hooray!  Except that the hot water wasn’t working and the water was ICY cold.  In an example of my stellar parenting skills, I strip the girls naked and shove S in the shower, helping her wash quickly before she turns into a popsicle.  K, in all of her naked glory, says, “I need to go potty.”  Fine.  I take her to the potty where she sits down, starts to go and....

a frog jumps out of the toilet from between her legs.

I am not kidding.  Yes, you may laugh.  It was pretty funny, but not to K.  Rightfully so, she flipped out!

For the next 24 hours, she kept asking me if there was a frog in her tummy.  I could not figure out why she kept asking me that and I kept assuring her that there was not a frog in her tummy.  Then, it occurred to me.  This is my very literal, language challenged, sensory overloaded, child.  She thinks she peed out that frog!

Needless to say, she’s not a big fan of frogs.  And we still had 2 days of camp left...

Fast forward to the present, a few weeks ago we are enjoying our pool and all of a sudden, K screams, “THERE’S A FROG IN THE POOL!!!!”  There were quite a few leaves in the pool and we assured her she was just seeing a shadow from a leaf.  This went on for at least 2 hours, until, finally, sure enough, we found the frog in the pool.  Oh, she was vindicated!  She was right and I’m sure she won’t let us forget it for a very long time.  Of course, this has been followed with the need to do a thorough frog search each time she wants to get in the pool.  

The irony?  She adores Kermit the Frog. 

We’ve not been back to Girl Scout camp. My camping days are over.  I can make s’mores at home - in the microwave if I am desperate.  I can sing camp songs by the pool.  K’s Godmother still speaks to me, so I guess we all survived.  Believe it or not, K would be the first to tell you how much fun she had at Girl Scout camp and wonders when we can go back.

Never, my frog-fearing girl.  Never.  We’ll save our adventures for places with hotel rooms and professionally maintained bathrooms that keep the critters out.

We have survived...

We finally reached the end of our school year.  Finally.  I'm pretty sure this one was measured in dog years.  I am so glad it is behind us.

I have been away from my blog for 6 weeks.  This is no way to build a readership, I know, but life is a journey and my journey has been bumpy lately.  Starting this blog meant sharing my thoughts and being vulnerable.  It means letting people know the good, the bad, and everything in between.  Appearances would dictate that I don't share the hard stuff, but to censure the blog in that way would contradict the spirit in which I started it.  Realistically, though, it's not always easy to be true to that spirit.  Some things are just personally harder to express and take time to process.

I spent the better part of May doing research.  More research.  The never-ending pile of research.  Why?  Because we had yet another IEP meeting to tackle near the end of May.  This was our 5th meeting of the year.  I think that is a record.  I wonder if I should call the Guinness Book of World Records?  I may have made history this year in terms of IEP meetings.

I'd like to say that this meeting was particularly important but the truth is that every meeting has been equally important.  They are also equally stressful.  This one, though, seemed more monumental because the discussion was to focus on K's school placement for 5th grade.

Armed with my delicious To-Die-For Blueberry Muffins (aka Suck-Up Muffins), we dragged ourselves to a 7:45 a.m. meeting.  My husband and I had spent a great deal of time discussing our different options, what we wanted to accomplish and our strategy.  This time, I was going to be the Good Cop and he was going to be the Bad Cop.  Have I mentioned how much this ridiculous game play irritates me? Still, we've learned to play the game.  Blech.

As expected, our options were reduced to two:  keep her where she is, with the same supports in place and where she continues to fail and make little to no progress or move her to a special education class at a different school.  Both options left us with a sick feeling in our stomachs.  The school team strongly recommended the special education placement.  I could speculate as to the different reasons why each person on the team felt that way, but it would be discouraging to do so.  Although I try to leave emotion out of it, this is always an emotional situation.  I was struck by how easy it was for them to let her go.  Again, I thought about how much love she has shown them, day after day, year after year and even if they believe it to be in her best interest, isn't it hard for anyone to say goodbye to her?  And what about her social and emotional well-being?  She has only ever known this school, these other children.  Moving her means changing everything - school, teacher, speech therapist, students.

Oh and the irony?  The same specialist from the school district was there.  You might recall from an earlier blog entry that he mentioned how the final decision on placement belonged with the district.  I found that funny because there's no way anyone but my husband and I will have that final decision.  At this meeting, he simply stated that these were the offers on the table and it would be a decision for my husband and I to make. I think he's finally getting to know me! So glad he figured that out!  LOL!

We left the meeting without choosing either option.  We needed to think.  I needed to process this monumental change.

In the meantime, while we thought about it, another challenge got in the way.  For some reason, the week after our meeting, K started experiencing significant anxiety.  She missed most of the school week and the pediatrician wants her to see a child psychiatrist for assessment and possible diagnosis of generalized anxiety disorder.  I'm not sure I can accurately describe what it was like to see her in this state.  She was not herself at all.  She was a wreck and it broke our hearts.  Her anxiety was based on an irrational fear and nothing we could do or say seemed to help at all.  We just had to be there for her and hope she could get through it.  Even now, I get teary-eyed thinking of her in that way.  Our happy, smiling, loving girl was replaced with a scared, shell of a girl without a smile or laughter or her normal buoyant personality.

Now our decision became exponentially more complicated.  Would she be more stressed staying where she is, but continuing to fail or moving to a new school with no guarantee of success?  I think I got another clump of gray hair and 15 more wrinkles that week.

For now, we've decided to accept the offer to move her to a new class at a new school.  We are also considering homeschooling.  The speech therapist that has been working with her at school since 1st grade is moving to the same new school, which made that offer significantly more appealing.  We shall see where this leads us.

Still, even in these difficult times, I look at her and realize how much more she brings to my life than I could have ever anticipated.  I am so much better as a person for having this particular child in my life.  When I think about how much I used to take for granted, I am grateful that my eyes have been opened.

What to do, what to do...

It all started with Gymboree.  If you've never heard of Gymboree, picture a room filled with brightly colored play structures (toddler sized), brightly colored balls, brightly colored walls, and brightly colored parachutes.  In this room, you will see parents and their children, primarily babies and toddlers.  In my case, it all began with S when she was 7 months old.  At that age, the reality was that she was never going to be doing back flips before she could walk, but there was one important component that was a potent elixir...other grown ups!  This is a huge draw for most parents.  When the kid's activities are also social time for the grown ups, it's a win-win!

From Gymboree came gymnastics, play & music classes, dance classes, day camps, swimming lessons, Girl Scouts, and piano lessons.  We aren't alone!  In households throughout our community, parents are busy encouraging exploration, skill development, and packing schedules of activities that require spreadsheets and color coded calendars to get through the day.

I've pretty much given S & K the chance to explore.  I may have made the initial choices to see what they like or where their natural aptitudes lie.  For S, she really enjoys dance and is beginning to find her niche in jazz dance, although she likes ballet, too.  She likes Girl Scouts and is often up for trying new things.  She is a talented artist and if I offer art classes, she will be happy to go.  As always, things with K are slightly more complicated.

K has tried a variety of activities.  We used to say that K would be happiest playing softball, while singing or playing an instrument, wearing a tutu.  She wants to do it all.  We want her to do it all, but I have learned that some things just aren't meant for her, no matter how much she wants it.

With her auditory processing disorder, she doesn't always hear what is around her as fast as it is delivered.  She simply won't hear instructions, especially if they are given too quickly, and particularly when there are competing sounds jumbling up the process.  This makes team sports very stressful, so we took softball and soccer off the list of activities.  Golf?  Possibly.  Tennis?  Maybe.

She seems to have an aptitude for music.  From a young age, she could sing on key and keep a beat.  So, when she wanted to dance like her big sister, it seemed like it would be a great fit.  It was...until she wanted to try tap dancing!  Tap dancing?  My child who can't stand loud noise, plugs her ears with her fingers, and will avoid shopping in stores with loud music?  She loved tapping, but when her teacher started telling her she had to practice at home, I knew something was up.  Yeah, tapping really wasn't up her alley.  Kind of like swimming, she was having a tough time getting her feet to do something different from her arms.  Frankly, she looked like a marionette with someone else pulling the strings, arms and legs going different directions, floppy and loose...and I say that with all the love in the world.  Thankfully, piano lessons have been wonderful.  It's individual, only as loud as she plays, and suits her innate musical talents.

Girl Scouts has been an easy and constant activity for both girls.  That is changing now, too.  K is just not as mature as her peers and it is difficult for her to stay engaged in our activities when things are often just above her head, a little bit out of reach.

So, what to do?  What to do?  I asked some other parents with special needs kids what kinds of things their kids participate in.  You know what they said?  Most of them said karate or martial arts.  Okkaayy.  Do they play music in those classes?  Can she wear a tutu?  No?  Well, we might give it a try anyway.  I have a hard time picturing her with the discipline required in those classes. I have a hard time picturing her karate chopping her way through the world.  On the other hand, we don't want her to be limited, so I can't cross it off the list until she's tried it.

Summer is coming soon and that is a great time to try new things, so we shall see what that brings.  Maybe I can find her a pink karate outfit...

Girl Power

Both of my girls, S & K, are involved in Girl Scouts.  Also, because I love to be involved with the things that they do, I have been the leader for each of their troops from the very beginning.  Either that, or I'm a glutton for punishment, but I prefer to enjoy the experiences as often as I can.  With S, we are in our 7th year; with K, it has been 5 years.  I have learned many things through those years.

First, I've learned that I was never cut out to be a daycare provider or elementary school teacher.  Many years ago, I had my palm read at the Sonoma County Fair (for my Santa Rosa friends, I know you'll remember the "psychic reader" at the edge of one of the exhibit halls, near the midway).  She said, while looking intently at my palm, that I would definitely be in business for myself, with another woman, and we would be running a daycare.  Bwaaahhaaaahhaaaa!  The largest either of my troops has ever been was 17 girls.  Generally, I average around 10.  Let me tell you, those girls can give me more than a run for my money whether there are 17 or 10 or 6 or even 3.   If you get nothing else from this entry, let the lesson be that one should never waste $5 on the palm reader at the fair. ;-)

More importantly, though, I have learned that these girls are really capable of many things.  Yes, Girl Scouts is still about camping and badges and s'mores.  I'm not that kind of leader, though. Well, I'm definitely a s'mores kind of leader and badges too, but camping?  Not so much.  That's okay because Girl Scouts is also about offering leadership opportunities to even the youngest of Girl Scouts.  Among the many programs that have been available, I am privileged to have been able to start an ongoing discussion with them about the roles of girls and women in the world today.

From those discussions, it is inevitable that the topic of stereotypes is revisited over and over again.  We've examined the images of girls and women in the media (photoshopping, anyone?) and what kinds of assumptions we all make when we encounter someone different from all of us.  They have had very thoughtful discussions about people with disabilities and people who might look different, but really are just like them.  They see K and are able to accept her (as far as I know).  She doesn't always say the right thing or act in the "expected" way, but that doesn't seem to matter too much to them.

This year, as my 4th grade Junior Girl Scouts have explored these different topics, one thing has remained true:  these girls are growing in a mindset that they can do anything!  Isn't that great?!?  Some of them want to be mothers, some of them want to be engineers, others want to be bankers or teachers or scientists or bakers.  The point is that it seems like they have no idea that women ever had any limits.  I love that.

They see themselves as smart, imaginative, creative, strong, and confident.  They celebrate their own individual talents - encouraging one another and accepting one another - and then bring all of the personal strengths together to accomplish a common goal.

These girls inspire me.   The Juniors have created a skit to bust a stereotype that "Cheerleaders are dumb."  You know how they prove it?  A math competition, boys against girls.  The skit is not just the competition, but in it, the girls are smart enough to hire a coach to help them prepare.  So what have they learned?  How to look beyond a stereotype, how to creatively work together to create a skit, how to make a plan and execute it, how to work together and incorporate all of the different ideas, how to listen to each other, how to express their ideas, and when to compromise.

I wonder if I would be able to recognize all of their wonderful qualities and talents if I had not been working with them through Girl Scouts.  Recently, someone said to me, "Is S still in Girl Scouts?  Isn't she a little old for that?"  Technically, no she's not; Girl Scouts has programs for girls all the way through high school.  My response was something like, "No.  There isn't a girl around that is too old to learn about herself and participate in so many great opportunities."

When they are all noted as the movers and shakers in this country from politics to business to moms, I can say that I knew them when...

Oh, and of course, there are the cookies, but that is an entire post all by itself.

Miss Smarty Pants

Back in December, K was making out her Christmas list.  Top on the list:  Pixie Dust.  She wanted Santa to bring her Pixie Dust.  In our household, Santa makes an effort to bring one or two of the most important things on the list, but this was a tough one.  However, I'm a smart girl!  I concocted the pixie dust and Santa delivered it with a letter telling K how hard it was to get in touch with Tinker Bell and with a reminder that the pixie dust only works in Neverland, so don't try to fly at home.

I need to remember that although she has her challenges, K is much smarter than I am.

Her first response was that she could take the pixie dust to Disneyland  RIGHT NOW and Tinker Bell would put the magic back in it so that they could fly together.  Fortunately, we weren't going to Disneyland, so I was off the hook for that one.

A few months have passed and we did plan a trip to Disneyland over Spring Break.  I was hoping that by now, K would have forgotten all about taking her pixie dust to Disneyland.  That's how these things usually work with kids.  Something that is ultra-important one day becomes a distant memory in a matter of days, weeks, or months.

Not so much this time.  We gave K a new backpack to take on the trip and the very first thing she put in it was the bag of pixie dust.  Darn it!  However, as luck would have it, the night before we left, she was rearranging her backpack, took out the pixie dust and forgot to put it back in so it was left behind at home.

Whew!  I'm off the hook!

Not so fast!  She is a clever problem solver.  No need to worry.  She can just tell Tinker Bell that the pixie dust doesn't work and Tinker Bell will give her the magic and she can bring it home to practice her flying.

Uh oh.

So, being the tenacious person that I am, I am wracking my brain to figure out how to get around this one.  Originally, I planned to tell a Cast Member at Disney about the pixie dust so Tinker Bell could give her the message that the pixie dust only works in Neverland.  I decided to stick with that plan.  The Cast Member said he would take care of it and when K approached Tinker Bell, the first thing Tink said was, "How did the pixie dust work out?"  K said, "It doesn't work!  I can't even fly!"  I'm worried now because this is a big deal for K and I am hoping that Tink will come up with something clever because I clearly did not do a good enough job coaching the cast member.

Tink says, "Well, it's just for practice.  Did you think a happy thought? What was your happy thought?"

K responds, "To fly with you."

Awwwwwww.....

It all worked out okay, but when we got home, the first thing Miss Smarty Pants did was get her pixie dust and sprinkle some on her head...just in case she took a trip to Neverland that night.

Gotta love the imagination!  I hope I can keep a step ahead of her, but it is unlikely.  I'm glad S went along with it, too.  She really likes being part of the magic for K and it is a wonderful thing to see.