Friday, December 23, 2011

Extra-Special Holidays

One of the great joys of being a parent is rediscovering the holidays through the eyes of your children.  Somehow, in spite of the hustle and bustle, it is fun to create our own family traditions while passing down those that were part of my childhood.

I also find that the holidays are kind of the great equalizer.  At this time of year, there really aren't many differences between parenting S and K.  They are both excited, they are both enthusiastic, they are both overwhelmed.  I think that a lot of parents with extra-special kids realize that the holidays are fertile grounds for sensory overload and total meltdowns.  K doesn't tend to meltdown, thank goodness, but she does get overloaded - both in her sensory system and her auditory system.

It's important to find ways to help both of my kids cope when they are overloaded.  Fortunately, time helps with that.  The older they get, the better they are able to handle it.  Still, I try to make sure we have ample quiet time and opportunities to unwind.  Spending an extra few minutes reading together is a worthwhile investment of time, even if it does mean staying up later than planned.  I also really limit their tv and computer time (yep, I just earned my membership in the Mean Mommy Club).  Not only does this help reduce the over-stimulation, but it forces them to engage in more playtime together and believe me, they can get really creative in that time.  This year, I've been the audience for countless dance shows and fashion shows!  I've especially enjoyed listening to them sing along with Selena Gomez and Taylor Swift.  Typically, one is the "announcer" and it's funny, Taylor Swift (K) always seems to be the opening act for Selena Gomez (S)!  They've been signing autographs, too.  I don't have the heart to tell them it's probably a form of plagiarism.  Although these shows are active, it's a different kind of stimuli that seems to be easier on them.

Although S is in on the secret of Santa, she has played along with K to keep the magic alive.  The wish lists for Christmas were a crack up to me.  S wants a hamster (not gonna happen!) and K wants pixie dust - so she can fly inside the house and outside too.  GAH!  K made a list of presents she wants to give that included pjs for our neighbors down the street and clothes for some other neighbors (both of which received cookies instead), a watch for the priest at church (maybe she wants him to keep track of the time during his sermons?) and "china food" for her Chinese grandparents.  I love her generous heart, but neither of the girls seems to have a firm understanding of the many children in our community in need.  We are working on that, little by little.  We have enjoyed delivering food baskets to families in our town.

These are the moments that make our "extra-special" Christmas memories!  I hope that you have the chance to make lots of extra-special memories of your own with your family and friends, both near and far.  If you have an extra-special child, I sincerely wish for you a holiday season free from meltdowns and filled with all the special gifts that our extra-special kids bring to our lives.

By the way, Santa did manage to find Pixie Dust...with a note attached informing the recipient that it only works when you are in Neverland.  Hopefully, Santa will pass the test and remain in good standing with K!

Thursday, December 15, 2011


I am blessed to have many friends.  I have girlfriends who know me better than anyone, the women I turn to for support, for laughter, for time away.  I value these friendships dearly.  I would be completely devastated if I looked around and found myself with only acquaintances and no true friends.  I won't beat around the bush on this one.  This is a hard post to write.  As parents, we never want to see our children hurt.  It doesn't matter if they are the garden variety of special or extra-special:  seeing your child hurting is more painful than if the harm was done to you directly.  Both of my girls have encountered conflict with friends and until this year, it has been fairly easy to manage.  S handles things on her own; K, most of the time, doesn't even notice.

With S, the older daughter, she has experienced conflict in a variety of ways.  Friends have spread rumors about her, ignored her for reasons that she didn't understand, or said hurtful things to her.  All of these different situations were difficult for her.  They have happened at different ages, but helping her figure out how to deal with these conflicts has remained consistent.  First, we talk about it and why it was hurtful.  Second, we try to see it from the other girl's point of view.  Then, we talk about how she wants to handle it.  Does she want to just wait and see how things go?  Does she want to talk it out with the friend?  Does she need an adult (usually me) to be there to support her?  Most often, our advice is to just continue to be nice - never give someone a reason to talk badly about you.  If the problem persists, it is okay to stand up for yourself.  Tell the friend, "What you are saying/doing hurts my feelings.  Please stop."  Fortunately, these situations are few and far between for S.  She makes friends easily and is a good friend, too.  She has made her mistakes, but learns from them, apologizes when necessary and tries to do the right thing.  Still, it is hard to explain to her why people do or say the things that they do. It's not always easy to help her understand a different point of view.  S might not understand something at the time it is happening, but eventually she does understand and can use the skills we have talked about to overcome the situation.  Her friends always reciprocate.  She has friends to lean on for support, hang out with, giggle with, enjoy time together.  K doesn't have that.

K, my extra-special girl, rarely has conflicts with her friends, but she is, by far, the more vulnerable of the two girls when it comes to teasing, taunting, or bullying.  By participating at her school and in her extra-curricular activities, I saw this starting in earnest around 2nd grade.  It is hard to stand by and not want to intervene, but I've tried to temper my reaction by watching K.  If it doesn't bother her, then I don't make an issue of it.  However, my husband and I both knew that this year - 4th grade - would be the turning point.  Sure enough, within the first month of school, K was upset because some of the other girls were laughing at her.  Another time, one girl told other friends that she didn't like K anymore because "she is weird."  K has been yelled at during recess because she has a hard time understanding all the rules of the games.  She's been told, "You can't play with us.  Go find someone else to play with."  She sits alone in the lunchroom every day.  All of this bothers her, as it should.  I thought it was hard to watch when she wasn't noticing.  Now that she notices, it's like a knife to my heart each and every time.

K doesn't understand why things have changed for her.  I can't tell her that it is hard for her friends to play with her because her auditory processing speed is slow, so it makes her look like she's just not catching on.  I can't tell her that she's less mature than her peers or that singing songs from the Disney Channel in the middle of recess, on your own, with no one participating with you, makes her look too different.  I can't explain to her why the girl who was her very best friend in 1st grade has moved on to other friends.  K can't figure out what happened when one day they were friends and now they are not. She only knows that it makes her sad or frustrated or mad or hurt.  I try to redirect her.  We talk about who she could play with at recess and role play the different ways she could ask someone to play.  None of this changes the fact that, in reality, she doesn't have even one real friend to hang out with.  There are many girls that like her, but none that really play with her or seek her out.  She has to do her part, too, by asking to play, asking someone to sit with her at lunch, but when it is rarely reciprocated, it is difficult to build those skills.

As for me, this leaves me at a crossroads.  Do I call the moms of the girls who have been mean to K?  At what point does she need me to intervene on her behalf and at what point is it better for her to learn how to manage these things on her own?  Do I do both?  This is only the beginning.  There will always be someone trying to tear her down.  We all experience that; extra-special kids probably experience it more.  Do I try to explain to her that the problem is with the other girl?  Maybe, but she doesn't care about that.  She just wants a friend.  Her IEP is full of goals and accommodations to help her get an education, but there isn't anywhere to check a box that says, "Susie must be K's friend."  Once again, there are parts of this I can control and parts that I can't.  I can't make another kid like her, play with her or include her.  I can't make her teacher or the school find her a buddy.  I can't force a friendship when it isn't reciprocated.  And it breaks my heart to see my sweet girl missing out on something that I cherish so very much.  The salt in the wound is that she would be a very good friend if someone would give her a chance.  She just needs one person who won't judge her, but will just appreciate her for all she is and has to offer.  Where is the person who likes to sing Disney songs? Where is the person who will see that she is almost always nice (we all have our bad moments, don't we?), she genuinely likes everyone she meets, and will happily share her toys if you would just come over to play?

What I can control is doing whatever we can do to help her.  If it means more role playing, then that's what we do.  If it means I call every parent on the class roster trying to drum up a playdate, then that's what I have to do.  If it means that I have to be a part of the playdate to facilitate the fun, then that's what I will do.  It never feels like enough, though.  When I ask her who her best friend is, she responds, "I don't really know.  I don't think I have one."

I am so proud of S. She is surrounded with friends and has learned to be a good friend.  I value those attributes so much.  K has the same attributes.  I just hope and pray every day that K has an opportunity to experience the same thing.

Wednesday, December 14, 2011

My "Suck Up Cookies"

I am often asked how I have managed to get so many services in place for K on her IEP at school.  It has not been an easy road.  There have been twists, turns, and downright nasty confrontations in the past, but eventually we created a solid document that is followed by the team at school.  Nasty confrontations aside, I attribute some of our success to one thing:  baking.

Long ago, when I worked a "real" job (stop me from laughing right now because this job is way harder than any I ever got paid for), I discovered that the quickest way to get what you want is to kill them with kindness.  This is, in my experience, a generally good idea for life.  Being kind never has a downside.  Back then, killing with kindness usually involved looking for something positive about another person, offering sincere compliments, or lending a sympathetic ear.  I still try to find something to like about any person I meet.  Some people make that really hard to do, so I'm not always successful.  There have been some people like that on our IEP team at times.  That makes it exponentially harder, because we are supposed to be helping my extra-special child and everyone knows that a mad mama bear ought not be crossed.

Now, it's all about baking.  When we began this journey with K, I made many mistakes.  For example, at my first IEP meeting, I was asked to describe K's strengths.  I answered along the lines of, "She's happy, easy to get along with, and very charming."  Those are, in fact, some of her strengths.  A year later, I figured out that they weren't asking about that.  They wanted to know what her school-related strengths were and from that same perspective, about her school-related weaknesses.  Ooohhhhhh.  Chalk one up to "inexperienced mom unwittingly sabotaging her own credibility."  Whoops!

As things progressed, I got smarter and slightly more savvy.  Once, we had to gear up for a big request that would likely be rejected, although we strongly believed the service we wanted for K was absolutely necessary for her to access her education.  Big meeting scheduled and I've got everything I can have in place, including an advocate.  I'm nervous, stressed out, stopped sleeping about a week beforehand and I need to try and kill these people with kindness when I'd really rather crawl across the table and wring someone's neck.  So, what do I do?  I bake.

I have found that showing up with yummy food always makes things a bit easier.  If the meeting is scheduled for the morning, then I offer to bring Starbuck's.  It's a worthwhile investment, let me tell you.  I've baked brownies (from a mix but who's telling?), muffins (from scratch!) for the early morning meetings, and cookies.  Lots and lots of cookies.  I call them my "Suck Up Cookies."  There is no specific recipe for Suck Up Cookies.  It is different every time, but the sentiment remains the same.  People are always happier when they have a full belly and I make sure to tempt them as best I can.  Sometimes, no one eats a thing, but I don't let that bother me.  I keep bringing the treats!

There are really so many things that go in to building a strong team to support your extra-special child.  Knowledge of your extra-special child and her particular challenges is crucial.  You are the expert on your child, no matter what the diagnosis is or how much time a teacher spends in the classroom with her.  At a meeting, I once said, "You may be the experts in your field of education, but I have a Ph.D. in my daughter."  Finding some personal common ground with members of your team is good, too.  I think that the more personally connected they are to you and your child, the more likely they will be to work with you to the benefit of your child.  No amount of baking in the world can replace a cooperative team, but it sure doesn't hurt!  Our team now knows to expect something good from me and I'm happy to oblige.  Some of them even know that I call them my "Suck Up Cookies."  We laugh together, knowing that I'm joking...sort of.

Sunday, December 11, 2011


*Clunk*  That's the sound of my head hitting the table after a grueling afternoon of homework.  It happens often.  It probably also explains why I can't remember what I ate for breakfast, but that's not what I want to talk about anyway.

Homework.  I didn't particularly care for it as a kid and I don't particularly care for it now.  I mean, if I didn't actually have to do any homework these days, it probably wouldn't bother me a bit.  I fantasize about days like that.  Friday is my favorite day of the week!  Not only is it the start of the weekend, but it also the end of a school week and there is no homework!  Wahoo!

I do a lot of homework these days.  Even in 4th grade, my extra-special girl, K, needs guidance and assistance to complete her homework.  Sometimes, I simply need to be sitting next to her while she works (aaahhhhhhh).  Other times, I have to work with her step by step, reteaching every concept, trying to come up with ways to help her understand what she is supposed to be learning. *Clunk*

Those days are exhausting for both of us.  She has already spent the day at school and then has to tackle homework.  Most of the time, she didn't get a good grasp of what was expected while she was in class, so it really does involve starting as though she has never seen the work before.  This takes a long time.  Make that a double-clunk - one for me, one for her.  Most likely, her homework will always take her longer to complete than her peers, but some days it is exceptionally longer.

S, on the other hand, has been doing her homework independently for several years now.  All I have to say is, "Did you finish your homework?" and then watch the grades get posted online.  Recently, though, that wasn't the case and it was a real challenge for all of us.

S sustained an injury at school that left her unable to use her writing hand for almost 6 weeks.  All of a sudden, I'm now on double duty when it comes to homework!  I became her scribe.   However, her homework is more complex and sophisticated, so while I'm proud to say that I can, actually, still help her with Algebra and Language Arts (Science and Social Studies are 50/50 for me), it does require me to be fully engaged in what she is doing.  Unfortunately for both of us, I can't switch my brain back and forth between 4th grade and 7th grade for any sustained length of time.  I'm better with one thing at a time.  Neither girl wants to wait to finish their homework because that just means a longer time before they can get on with the work of being a kid.  Someone has to wait, though, because Mom can only focus on one at a time.

Often, S is the one doing the waiting.  I know that my window with K is a small one, since she is going to be tired more quickly.  That which can be completed in 30 minutes at 4 p.m. will take 60 minutes at 6 p.m.  S doesn't always like to wait (who can blame her).  She's developed a consistent study and homework routine and waiting isn't usually a part of that.  She's really mastering that wounded, "I think you love her more than you love me" look. *sigh* and *clunk*

We got through it and when she was able, S went back to doing her homework independently without skipping a beat.  I don't miss having to juggle all that work, but I can say that there really was a blessing in the situation.  Because I had not done homework with S for a long time, I didn't have as deep of an understanding of what she was doing.  I only knew that whatever it was, she was doing it well.  Working through pre-algebra was not only reaffirming (I actually caught the very few mistakes that she made), but it was fun to do those problems with her and really see what she can do.  Language Arts involved an essay that had to be written and the process was very thorough.  She and I discussed the topic thoroughly and with my more experienced perspective, I was able to challenge her with questions, making her think more and do more than she had done before.  I give high marks to her teacher for the excellent job she does and the high standards she sets for her students.  I found those days with S to be stimulating and satisfying for me, rather than exhausting.  By watching her think, it made me think in ways that I haven't in a long time and it was great.

I still don't like homework.  It's a daily grind and I often question the reason for it or the benefit of it.  Still, there are moments, no matter how brief where the task requires creating another connection with both of my kids and that is a good thing.

Wednesday, December 7, 2011

Santa, Please Bring Me a Superpower

Moms and Dads are already superheroes in my book.  I know lots of people would like to be able to fly or be invisible.  Invisible might be good if it meant I could escape from my own reality for a while.  Neither of those totally work for me, though.  Santa, I want a superpower for Christmas:  I want to be able to be in two places at once.

Sounds pretty good, huh?  Consider this:  those of us with extra-special kids have the same busy schedules as everyone else.  The mom who has special (not extra-special) kids knows what it is like to have to run one to practice, another to dance, and make sure homework is complete and chores are done.  When you have an extra-special kid, this delicate dance of schedules can quickly turn into something extra-stressful.

When K was young, I was driving her 30 minutes out of town to go to speech therapy.  That's 60 minutes driving, 60 minutes in therapy.  Twice a week.  S was in school and needed to get there and back each day.  K was also in preschool and one year was dually enrolled (one special ed class; one regular preschool class).  Then we had to add in occupational therapy.  Once a week, 20 minutes to get there, 60 minutes in therapy, 20 minutes back.

I learned pretty quickly that the notion that I could do everything myself was a complete myth.  I simply couldn't be picking up S from school at the same time that K was in speech.  Conversely, I couldn't take K to occupational therapy at the same time that I had to take S to dance.  I think we live in this culture that says that we must be and do all things for our family.  I know I'm not the only stay-at-home mom that feels the pressure to perform to somehow compensate for the actual wages we don't earn.  It's nuts and it makes me nuts, too.  Working moms feel the same pressure to "make up" for the time they are working and not home with the family.

We need to be kinder to ourselves.  I would love to be able to do it all.  It is especially hard on S, this scheduling craziness that is our life.  Getting the appointments for speech isn't like calling to get your hair cut.  Often, the therapist has one or two times for you to choose from and that will be your slot from now until eternity.  In my experience, one of the two time options is almost always during school, which means I better take the other choice because pulling K out of school adds another layer of complexity.  Anyway, so S has to accept that pretty much everything in our household revolves around K's schedule. 

S takes dance classes 3 times per week.  She really likes it!  She would like to take more jazz dance than ballet, but her studio doesn't offer another class at her level.  Answer?  Move her to another studio.  Reality?  Current studio is literally a 2 minute drive from my front door to theirs.  That kind of convenience three times a week trumps the extra jazz class for now.  It's not like we are sitting around just watching the flowers grow until it is time for dance class.  Nope.  We are busy doing homework, getting dinner, trying to eat together as a family.  Someone inevitably needs to take a shower or those chores need to get finished.  2 minutes to get to dance class?  Yep, that's how it has got to be.

Asking for help has become much easier for me as time has passed.  I can't be bothered with the feelings of inadequacy or worry about what others might think (yes, I've been known to worry that they think I'm just trying to hand over my kid for no good reason).  Time is too precious.  One year, I had to rely on my parents to get K to occupational therapy every week.  Did I feel bad about asking?  Sure, but once I got over that, I could see that my dad got to spend some quality time with K - just the two of them - while he took her to OT.  There are blessings to be found in asking for help that are bigger and more valuable than just taking my place as chauffeur.  I think that many times, I default to asking someone to take over my duties with S because I am so involved in all of K's schedule, but it's important to show S in some way that she is just as important as her sister, in spite of what the schedule looks like.  I have to believe that she will someday recognize that I did my best every day to make sure she felt special, too.

I still wish I could be in two places at once, but not because I feel inadequate.  I want to be in two places at once so I can take care of my family, but also be enjoy a spa day now and again at the same time!  There could be lots of benefits to this superpower.  When I figure out how to harness it, I will market it and become a gazillionaire.  Until then, I'll continue to ask for help.

Friday, December 2, 2011

Report Card time!

Report card time.  This may be one of the most challenging situations to balance between my extra-special girl and her neurotypical (NT) sister.

One thing I have always told both of my girls is that it is the effort that counts.  Sometimes it will pay off and sometimes it won't, but if you look back and can honestly say you did the very best that you could do, then the results don't matter.  You can live without regret.

S, the sister, brings home her report card.  Straight As and she's as proud as she should be.  She works hard and her grades reflect that effort.  Academic standards are outlined and her proficiency at them is documented.  In a society where we value the results, she's right in there with the best of them.

K never even sees her report card.  We typically have a teacher conference or team meeting, take the report card and file it away.  K works as hard as her sister and maybe even harder given what she is trying to overcome, but the results don't come close to reflecting her effort.  Through no fault of her own, she simply doesn't achieve the same grades as her sister.

There is no expectation that they be the same.  There never has been.  It's all about the effort.

However, how do you celebrate the achievements of one without making the other feel bad?  I can't say we have mastered this at all.  Our approach has been to lavish our praise on S privately, away from K.  Yes, right or wrong, we give S financial rewards for her achievements.  In all fairness, how could we possibly have this interaction with both girls present?  K and S would both feel bad over the same thing, with different reasons.  K would feel bad about herself for not bringing home the results.  S would feel bad because if we try to compensate for K's situation, the rules aren't the same and S would feel it is unfair.  She would be right, in a simplistic way.

It's never that simple, though, is it?  We want to celebrate K's successes!  Her situation warrants the different approach because she shouldn't feel bad about herself.  We celebrate the effort and hope that she remains proud of her efforts because that dumb piece of paper doesn't reflect either her achievements nor her actual intelligence.   It's just that they don't have a line on the Academic Standards for "she's not as far behind as she was 3 months ago."  There is no "A for effort."  Even incentives offered in the classroom are based on results, not effort.  If K was graded on her ability to be kind, compassionate, giving, or cooperative it would be a different story.  If K was graded on the actual academic level that she has mastered, it would be a different story.  Apparently, though, you can't grade a 4th grader on 3rd grade subjects.

One way or another, we find ourselves left with two girls and two different approaches.  So far, acknowledging them separately is working.  I'm sure it won't last forever.  K will get more savvy soon enough and wonder why she isn't seeing her report card or, if she does see it, why her grades are not as good as she had hoped.

If you have any better suggestions, I would love to hear them.  I'm out of ideas - I guess I'm not going to get a good grade in "creative thinking."  Darn it.  Good thing we celebrate the effort around here!

Thursday, December 1, 2011

I don't want to grow up!

One of the things that I've always appreciated about my extra-special kid is that she seems to linger in the ages and stages longer than her sister.  With the older one, the stages seem to go by so fast.  In a blink, Sesame Street was replaced by Dora and then Dora replaced by Hannah Montana.  Yes, there were probably some shows in between Dora and Hannah, but wow, did the changes seem to zip right along.

My extra-special girl, on the other hand, tends to mature more slowly.  I think that is probably true for many extra-special kids.  She is 10 now and will still choose to watch those preschool shows in addition to watching the same shows that interest her older sister.  She remains a fan of Barbie, loves Disney princesses, and best of all, she still believes in Santa, hook, line and sinker.  Okay, all of us in our family still love Disney princesses so that probably isn't a valid example...

This slow maturity can be a double-edged sword.  It makes me happy to have more time to enjoy the ages and stages with her because they don't pass so quickly.  However, it also leaves her open to taunting and teasing if she spills the beans about watching Dora instead of iCarly.  She doesn't see a problem with liking both, and she is 100% right about that, but kids can be cruel and being different is not always a good thing.

As the parent, my desire is to protect her from the teasing and taunting.  I want to just shush her when she starts talking about things that I know her peers will find to be unusual; I want to protect her from herself, even though she really isn't doing anything wrong - just different.  Of course, then I have to wrestle with my own guilt over somehow being embarrassed on her behalf, as though she should be embarrassed or ashamed of her differences.  I heard a comment on another message board where, at Halloween time, the mom was stuck because her 14 year old wanted to be a character from a much younger show and her thought was, "Can't you just be a slutty cheerleader like every other 14 year old?"  Can you imagine?  Realistically, that mom probably didn't want her daughter to be a slutty cheerleader, but it's amazing to what lengths we will go to help our kids fit in with their peers!  It's tough for us, as parents, to find the balance between letting them linger in these ages and stages and helping them to assimilate more successfully with their peers.  It's not like you can force them to mature any more quickly.  That will come when it comes.

For now, for me, I am just trying to enjoy K in this moment and in this time, while reminding myself that we should never be ashamed or embarrassed about the person that she is.  No matter how long we linger here, the time will pass much too quickly for me anyway.