Bad Mom Award

Here it is, my bad mom moment for the week.  Nick was on the verge of tears and I pushed him right on over the edge in to full on cry.  By laughing. Out loud.  In front of him.

We were getting ready for school, and while he was supposed to be eating breakfast I was getting my clothes, when he came in on the verge of tears to tell me that there was something in his ear and he couldn't get it out.  I made quick a glance and saw nothing.  I told him I didn't see anything.  He was insistent, and said it really hurt.  I still didn't see anything, when he confessed "It's a carrot!"  I pulled his lobe a bit and looked closer and sure enough, there was a broken off piece of carrot lodged in the canal.  And I burst out in a fit of giggles.  I'm sorry, I know that's not very supportive of me, but . .   a carrot?  He's TEN!   Shouldn't he have outgrown the compulsion to stick food into orifices other than the mouth by now?  I guess the memory of the goldfish cracker when he was four has faded.  I tried to suppress the giggles while I asked him "Can you please explain to me the thought process that lead to this decision?" but that just made him cry more, so I stopped giggling, apologized, and gave him a big hug.  I got a toothpick and promised him that I would only try once, and then take it to the doctor if  I couldn't get it out.  Fortunately, it came out without much effort, and he even managed to laugh at the whole situation.

That was yesterday.  Wonder what they have in store for me today?

I'm Still Working On It

This week, we finally signed the IEP for Nicholas.  It's official.  I have three kids in Special Ed.  For anyone reading this who hasn't heard the term IEP, it stand for Individualized Education Plan, and every child in SpEd has one. It lays out the qualifications, and goals for the child for the year. Ever year, we meet, go over the progress, and rewrite the goals.

The decision of the IEP team, in Nick's case, is to send him to a different school in the district for 5th grade, so that he can participate in a program for kids with high functioning Autism and Aspergers. It is a Special Day class, he will not be mainstreamed.  The program is wonderful and I know he is going to thrive there.  I am even hopeful he will make some real friends.  On the whole, this is a good thing.  Yet, when I went to sign the paperwork, I just wanted to cry.  

I'm not even sure why.  We are so blessed.  I have more than one friend whose children have had to fight just to live.  My friends deal with brain tumors, and leukemia, and liver cancer.  My kids have it so easy in comparison.  But I still want to cry, and I feel guilty for feeling that way.

I know in my head how lucky we are.  I know in my head that while it won't necessarily be easy, they will be okay and happy.  My heart just hasn't quite got the message yet.  It still feels the sting of seeing my son in tears after being teased and bullied.  It feels the sting of judgment and assumption that comes when others look at my kids and don't see them for who they are.  It feels the sting when I can see in people's eyes that they see labels and stereotypes instead of people: "Down Syndrome"  Autistic"  "weirdo"  . . .  the r-word.

I am grateful.  I am, truly, grateful that my children are healthy, and don't have to fight the battles other children do.  But in my heart, that's not enough.  I want them to be seen for who they are,  accepted as is,  included and valued for their unique gifts.  It's not too much to ask is it?

Or maybe, I just need to focus less on what the world thinks, and spend more energy on being grateful for the privilege of being their mom, and for their health and all the love and support that surround us.  Maybe I just  need to get over myself and my hangups.  I'm trying. 

I hope my stronger friends, whose children have real fights to fight, will forgive me, and be patient with me.  I look up to you, and want to be more like you.

I'm still a work in progress.

Introducing My New Son

After dinner, Robert and I were in the bedroom chatting on the bed, when Elijah came in and ever-so-calmly held up his pinky finger and said "Gabriel bit me."  Usually, when Gabriel bites his brother, we know right away.  The ear-piercing screech which immediately melts into hysterical sobs are a dead giveaway. Of course, that is also Elijah's reaction when Gabe opens the car door before he can do it, so his matter-of-fact presentation of the offense was highly unusual, not to mention highly suspect.  I responded to this report with "Are you sure he bit you?  You're not screaming bloody murder."  He immediately tilted back his head, contorted his face and began crying as though he had been grievously injured.  Robert and I just started laughing.  Not receiving the response he had hoped for, he took a deep breath to stop his tears and asked "Are you going to go get Gabey in trouble?"  Um, no.  We just laughed harder.  And told him we are changing his name.  So, I am pleased and amused to introduce to you my new son, Phakey T. McPhakerson.  T stands for Tattles.  Or maybe we should go with Phakey McTattlepants? Have to think on it. 

On Thomas Jefferson

I was going to write a long, thoughtful piece about Thomas Jefferson, his views on religion, and economy and social safety nets, but I am tired and lacking patience today, and I have progress reports to finish, so I'll just make this short and sweet, and save the deeper discussion on our Third President for a later day.

I just want to say, if you are going to make it a point to quote Jefferson in defense of your  ideology, please make sure he did in fact say what you think he did.  Please.  As the election season heats up in earnest, I am seeing and hearing the same old ridiculous quotations, and I really wish people would do some homework before repeating them. So, here it is, for those who can't be bothered to do their own homework.

"My reading of history convinces me that most bad government has grown out of too much government."   

He never said this.  What he did write, in a letter penned in 1807 and addressed to John Norvell is that "History, in general, only informs us what bad government is."  He offers no indication what that is, nor any judgments on the size of government.  Interestingly, in the same letter, Jefferson recommends, among others, the writings of John Locke, who many consider to be the father of liberalism. 

As an aside, for those of us who follow politics, but are distrustful of today's media, this letter is an interesting read, in that it reveals Thomas Jefferson having the same misgivings.  You can read the letter here. This  is a taste of his reservation: "It is a melancholy truth, that a suppression of the press could not more compleatly deprive the nation of it's benefits, than is done by it's abandoned prostitution to falsehood. Nothing can now be believed which is seen in a newspaper. Truth itself becomes suspicious by being put into that polluted vehicle."

If he only knew.

Moving on . . .

"The democracy will cease to exist when you take away from those who are willing to work and give to those who would not."

Another favorite of people who operate under the offensive assumption that those in need are lazy do-nothings who aren't willing to pull their own weight. A lazy excuse for not caring about others, in my opinion.  Some defend this one by referencing another quote, which appears to be a note to an editor regarding his translation of Destutt de Tracy's Treatise on Political Economy, "To take from one, because it is thought that his own industry and that of his fathers has acquired too much, in order to spare to others, who, or whose fathers have not exercised equal industry and skill, is to violate arbitrarily the first principle of association, -€˜the guarantee to every one of a free exercise of his industry, & the fruits acquired by it.'"   The ways that even this quote has been misused and abused is fodder for an entirely separate blog post. Suffice it to say that seniors, the poor and the disabled would not likely be classified by Jefferson as people who have "not exercised equal industry and skill." 

"That government is best which governs least." There is no record of Jefferson ever saying or writing this.

Aaaaand , last one for today.  Gotta get those progress reports turned in.

"Democracy is nothing more than mob rule, where 51% of the people may take away the rights of the other 49%."  Contrary to this sentiment, what Jefferson said in his 1801 Inaugural Address was “All, too, will bear in mind this sacred principle, that though the will of the majority is in all cases to prevail, that will, to be rightful, must be reasonable; that the minority possess their equal rights, which equal laws must protect, and to violate which would be oppression.”  

 Reasonable.  Does the Tea Party even understand that concept?

OK - Vent over. Progress reports, here I come.

See Me

SEE me.

I am creative.

I am funny.

I am affectionate.

I am curious.

I am capable.

I am smart.

I am artistic.

I am fun.

I am kind.

I am silly.

I am serious.

I am thoughtful.

I am aware.

SEE me.

I am a learner.

I am a dancer.

I am a gymnast.

I am a musician.

I am an athlete.

I am a story teller.

I am an artist.

I am a scientist.

I am a singer.

I am an actor.

I am a writer.

I am a boy.

I am a son.

I am a brother.

I am a friend.

SEE me.

I am not Down Syndrome.

I am not Autism.

I am not retarded.

I am not weird.

I am not limited.

I am not disabled.

I am not what you think.

See ME.

I am worthy.

I am full of wondrous possibilities.

I am amazing.

See. Me.

Taking a Leap of Faith

Life has a funny way of changing one's perspective.  I have been, and always will be, one of public schools' greatest defenders.  I am so proud to be a public school teacher, and even though I can only sub now, the days I teach are always my best days.  I love what I do.

But I am getting ready to hang up my hat permanently, so that I can dedicate my energy to the task of educating my son on my own.  Yes, I am going homeschool.  No one is as surprised at this change in attitude as I, but it has been a decision that has brewed for a long time, and both Robert and I believe that Gabriel's education is best served in our own hands.  Nick and Elijah will continue to be public school students, as they have been served well and are thriving.  Gabriel is a different story.  I believe the public school is doing its best.  I love his teacher, I know she adores him and she works very hard with him.  But the results aren't there, and it has become more and more apparent to me that the public school system, as a whole, has a lot of changing to do in terms of how it views kids with special needs, especially kids with Down Syndrome.

I used to argue that Special Ed teachers were better suited to teach our kids than mainstream teachers - a view that didn't make me a particularly popular in the DS community.  I still think that is true in terms of kids with special needs in general, but over the last couple of years, I've come to see that Down Syndrome is unique among special needs, and Special Ed teachers have been trained to teach a broad array of needs, without much in the way of specifics for each need.  Kids like Gabe need specific teaching strategies and respond well to a way of teaching that is antithetical to the way we, as teachers, know how to teach, particularly when it comes to reading.  This last year really made that point clear to me.

Last summer, I attended the National Down Syndrome Congress Conference, and I attended every workshop on teaching they had.  I heard from the world's BEST teachers on how our kids learn and the best strategies for reading, for number awareness and math.  I came of home from that energized and excited.  I went through my materials, I put together my own program from pieces of others based on what I had learned and decided I would "extra-school." Gabe.  As life can be messy and chaotic, I was not as disciplined as I should have been and my time working with him was inconsistent at best.  Some weeks we didn't work on anything at all.  In April, we met for his annual IEP and one thing jumped out at Robert and I.  When reviewing his skills and accomplishments for the year, and looking at the list of sight words he could read, two-thirds of those were what he learned from me working with him at home inconsistently.  If I was able to get better results with an inconsistent effort, than he got at school, something was wrong.

There were other concerns, as well.  He has nearly a dozen doctors he sees.  He gets sick more easily that others.  His attendance, consequently, can be less than ideal.  In particular, his sleep challenges really hinder him in a setting that requires alertness early in the morning.  He is often tired, and waking him up is usually a challenge because he doesn't sleep well at night.  Tired boy = uncooperative boy, more often than not.  

All these things we have been mulling over, and we were leaning toward a compromise of perhaps half day at school, and half day home school.  Then, this week, I was forced to stop everything by my eustachian tubes.  They are shut tight, the fluid build up in my ear has rendered me barely able to hear and constantly dizzy and nauseated, leaving me capable of nothing more than sitting still and thinking about things.  Ironically enough, this week Gabe had to see the audiologist, where it was discovered that one of his ear tubes had come out and the other was clogged and he, once again, was hearing through a filter of fluid.  This has been a constant problem for him for as long as we can remember.  Up until this week, I thought that the fluid build up merely dulled his hearing, and that speaking directly to him in a slighty raised voiced would properly compensate.  Now I know better. Fluid doesn't just dull the sound.  It distorts it.  Severely in some cases.  What starts as words entering my ear ends as a series of indescribable screeches and . . . well, distortions that have the same effect as nails on a chalkboard.  Meanwhile, in my less affected ear, I can hear voices, but the interference from the other ear makes it challenging.  If there are more than two kids talking, I cannot distinguish words.  If we watch a movie, I can only understand the dialogue when there is no loud background music, and if there is an action scene, forget it.  This was Gabe's first week of school, and he had a terrible week.  Well, no wonder.  With all the ambient sounds of a classroom, the music and the voices of other kids and aides, I'm sure he can't make out half of what is being said and his frustration is expressed through his behavior.  I have been short-tempered and easily irritated because of the sounds coming in my ear.  I can't imagine how frustrating it is for Gabe to be in the same situation, and not be able to express what he hears or why he is frustrated in the first place.

If we bring him home, allow him to sleep and get up when he is ready, work with him one-on-one with no other sounds or distractions, I think we will see much greater progress. When I work with Gabe, I see such amazing potential.  Yes, there will always be limits to what he can do, but those limits are moving, and I don't think the educational system has caught up.  I've come to believe that, as a whole, the educational system has not yet fully divorced itself from the era that viewed kids like Gabe as uneducable.  They are making progress, but I think there is still an entrenched view that their education should be centered around self help and life-skills.  It's going to take another generation - Gabe's generation - to grow and prove to people what they can do.  I am going to help make that happen.

This isn't a path we ever thought we'd choose, but it seems every day there is one more reason we should.  I am scared to death, but I'm more scared of letting him be pushed through a system and then wondering if I have let him down, and limited his future.  So, we are getting our ducks in a row.  We're calling for another IEP, and hoepfully, by the end of the month, will have him learning at home.  I have designed my lessons, set up a schedule. We are standing at the the edge of the diving board, staring into the deep water, praying that when we jump, we can swim.  It's a huge leap of faith for us. In the end, I pray it's a leap worth taking.

Can We All Just Calm Down?

As you've no doubt heard, five high school students in California were asked to turn their shirts inside out or go home because they bore the American flag on Cinco de Mayo. Obviously, the decision made by the Administration was wrong, and in violation of the students' constitutional rights to free speech.  I don't think I've heard any disagreement on that point. The decision was reversed and the Principal of the school issued a public apology.  That should be the end of he story.  Sadly, it isn't.

Despite the apology, the mother of one of the boys contacted Fox News (of course) and a media maelstrom was born.  The teachers at the school started getting hate emails, the local Tea Party group has called for a rally in the town, and there is even a facebook poll asking if the Principal should be fired.  (95% have answered yes).  Fired.  For one bad decision.  I hope all the people who are calling for the firing are judged as harshly at their jobs.  Imagine knowing that a single error in judgment could send you to the unemployment line?  

The reaction is so wholly disproportionate to the offense, it's disturbing.  Why are people so easily angered?  Why do they use the slightest infraction to justify that anger?  

Yes, the Administration of the school made a bad decision, but let's not operate under the delusion that those five boys were somehow innocent victims.  These are kids on the verge of adulthood.  They are aware of the world around them, they know what's going on and they were perfectly aware of the political climate and heightened anxiety in this country over the issue of immigration.  They made the decision to wear those shirts on that particular day not out of some deep sense of patriotism, but to be provocative.  (Set aside for now the fact that patriotism has nothing at all to do with what you wear, put on your bumper, or post as your facebook status.) They did it to cause a stir and garner attention.  They got exactly what they wanted and now people are unjustifiably angry.  If they thought their actions would somehow help the public discourse in this country, they miscalculated.

 What is so rally worthy?  Were all the teachers asked to take down the American flag in their classrooms?  Was the Pledge of Allegiance suddenly banned?  No.  In a misguided attempt at being sensitive, and proactively avoiding conflict, a bad decision was made.  That's it. One bad decision, with good intentions.  A decision which was consequently reversed and for which an apology was issued. That isn't good enough for the "I'm more patriotic than you" crowd, and now their self-righteous anger has led to hate mail being sent to good, honest, hard working teachers, who in all likelihood have a better grasp of what it means to be patriotic than the people propagating anger and hate in the name of patriotism.

I find hope in the students. In the wake of this nonsense, they gathered together to hold an impromptu peace rally on their campus.   They had a moment of silence for the teachers receiving hate mail,  and they raised the American and the Mexican flag together in a show of solidarity and mutual respect. The next day, many of the students wore plain white shirts to school to promote peace and calm tensions.

I wonder if the rest of the country will take a moment to learn a lesson from these kids and all just calm down.

Out of the Darkness

I've wanted to post about this for several days, but was so emotionally drained from it all, I couldn't even get started.  Now that I am finally sitting down to get it all out, I only hope I can do with the respect and eloquence it deserves.

Last weekend was a strange juxtaposition of emotions and events.  It began Friday afternoon, when I donned my pink "Bosom Buddies" T-shirt and headed out to spend the night with my fellow "Bosom Buddies" at the Relay for Life.  For those unfamiliar with it, the Relay for Life is a fundraising event put on by the American Cancer Society.  Each team commits to having someone walking for 24 hours.  We work in shifts, usually two at a time, but often more, walking for an hour.  We have tents set up behind our booth where we do fundraising in a variety of ways.  I learned about this team through a teacher I substitute for, who happens to be a breast cancer survivor, hence the team name.

We began our event with opening ceremonies, including survivors who shared their stories, which had us all thinking "Damn, I forgot to bring my kleenex" as we wiped away our tears.  Then the walk began at 6pm, with the first lap being walked  by the survivors while we handed them flowers and blew bubbles.   It is both encouraging and humbling to see so many people who have fought, and won, this battle and very unnerving to see how many of those survivors were young people.  It was a wonderful start to a truly amazing night.  We stayed up talking, laughing, playing games and taking turns walking.  Eventually, we even managed to sneak in some sleep.

I had planned to stay for the full 24 hours, but life had other plans, so Saturday morning I got up and left my team to go to a Memorial service for a wonderful man. This man had been a part of my life since I was a child.  He was my youth pastor growing up and head pastor of the church we attended when the kids were small.  He officiated our marriage, baptized all my children, spent time at my house when he came over and brought his trains to have a playdate with my son.  He was also my dad's best friend, and he and my dad would take my son to multiple airshows every year.  He was in every way a part of our family.  The service was beautiful and emotional.  More people showed up than the church could hold (over 700 people!) and everyone had a story to share about how this man touched them.

If I told you that my pastor died after a very long battle with illness, what would you think?  You might assume cancer because it is so ubiquitous a disease.  I'd bet you might also think he must have been a brave and strong man to have fought his disease for so long.  But cancer is not what took our pastor away from us.  Instead, he lost a battle with depression.  It's very hard to reconcile the man we all know with the act that took his life. Knowing that he took his own life, do you still think him brave and strong? Until that day, I was like everyone else who thought "People who commit suicide are selfish - too selfish to care how they are going to hurt others."  Isn't that what most of us think?  Maybe that's true for some people.  But not my pastor.  There was not a selfish cell in his body.  He spent his life caring for others, nurturing others, healing others.  Even just days before he left us, he was tending to others, calling my dad and checking to see how he was handling an early retirement that was forced upon him by a plant closure.  He was ALWAYS taking care of people, and guiding them to God.

So, I naturally spent the first several days after his death feeling just . . . lost.  I was raised to believe that God is bigger than all our troubles; a belief, a FAITH, that was guided and nurtured by my pastor, and throughout my life that has always been true.    Then WHY wasn't God bigger than my pastor's troubles?  How could the man who helped guide my faith not be saved from the pain of depression by his own faith? 

I spent the entire week after his death barely able to sleep because I could not turn off my mind.  Then I went to the Relay for Life, and I listened to all of these wonderful, inspiring stories.  Every survivor had a unique tale to tell, but they all had one very important common denominator.  They had support.  They had people - friends and family - who stood by them and took care of them and their children.  Their support team read with them and stayed with them during treatment and made them laugh, and cried with them when they cried.  As I listened to all of these wonderful beautiful stories of love, I looked around a saw a thousand people all gathered together, giving up a day to walk in support of those they love, and in support of people they will never know.  It made me very very sad, because it answered all the questions I had been struggling with the week prior.

How many of you have participated in an event to raise awareness and support for some disease?  I have walked for cancer, for MS, for Down Syndrome. There are events for AIDS and autism, leukemia, breast cancer, premature babies . . . but there is nothing for depression.  No walks to raise awareness, no rallies to show support, no fundraisers to fund research . . . nothing.  That needs to change.  We need to stop looking at depression as a mere emotion and acknowledge it for what it is:  a disease.  We need to stop judging people who suffer from depression as weak, and support them for who they are: brave, scared people fighting a disease.

I will never again assume that anyone who has taken their own life has done so out of selfishness or weakness.  My pastor was neither of those things.  My pastor was strong and he was brave.  He was brave enough to care for others while he suffered in silence.  I hope anyone who comes across this will do the same.  We need to bring depression out of the shadows and into the light.  We need to acknowledge it, and dignify those who suffer from it by giving it the same deference and attention as other illnesses.  Depression is real, depression hurts and depression kills.  Let's shine the light on it, and maybe, if we do it together, we can save lives.

What Keeps Me Going

What a Week

When I woke up this morning, I was feeling really . . . off. My throat was scratchy, which is no big deal, but I had no energy. I felt like I hadn't slept all week. Robert is such a saint, he let me take a nap all afternoon, and while I am no longer tired enough to sleep, I still feel really drained. Honestly, I think if I had a good cry, some of my energy might be restored, but I was sitting here trying to figure out WHY I feel so rotten, and it occurs to me this week was probably one of the most emotionally draining weeks I've had since Gabe's last serious illness. The obvious event was the surgery of my friend's son, Teddy - the one for whom I dyed my hair blue. The surgery was on Wednesday, and I spent the day at the hospital with my friend's family until he was in recovery and they could go be with him. It was a pretty tense day, waiting while an eight year old boy we all loved had his brain exposed so the surgeon could remove a tumor that we smack in the center. At the end of the day though, Teddy proved what an amazing kid he is, and he proved the power of prayer a hundred fold. The surgery went smoothly, they were able to remove the entire tumor and it looks to be benign. That night I really felt like crying, but never did, so I guess I've been carrying that around all week.

What Teddy' surgery did for me, however, was re-align my perspective a bit. I like to think that the experiences we've had on this parenting journey with kids who aren't typical has given us a pretty decent perspective on life - an appreciation for the important things, the ability to recognize the big stuff from the little stuff, and that 99% of it is little stuff.

But sometimes I lose my way, and get off track. I've been wasting a lot of time lately worrying about the fact that my house is always disorganized, and that I can't keep up with anything, and I've been spinning my wheels trying to fix that instead of spending more quality time with the kids. At the same time, the fact that all three of our kids can now be described as "not typical" has come into sharp relief.

For Nick, those little quirks and idiosyncrasies of Aspergers seem to have graduated from minor annoyances to hindrances and problems. I think we are at the beginning of what is going to be a far more challenging period for Nick, and I have to say, I'm not sure I'm up to the task. I am truly feeling wholly inadequate to guide him through what's coming, and I'm desperately afraid he won't make it through without some collateral damage. It doesn't help that I feel like I'm flying blind. Aspergers is such a great unknown to me, and it is such a wide net, that I don't even know which way to go. I think we are lucky that Nick seems to be one of the milder cases - he's been able to function in school and do well, even if he hasn't been able to make friends. But right now, that doesn't make it any easier. In many ways, dealing with Down Syndrome is sooo much easier. I have a whole support group, and there is so much more concrete information about DS. There is at least a kind of road map we can follow. With Aspergers, I feel like I'm in the middle of nowhere without a GPS to guide me.

Also this week, we finally had the speech eval on Elijah. It went exactly as I expected. For a four year old, he doesn't have the articulation he should, and his deficits are enough to qualify him for speech services through the school. It's not news to us. We expected this outcome, and honestly, it really isn't worrisome to me. Speech articulation is a whole lot easier to deal with than either Aspergers or Down Syndrome. Even with his deficits, Elijah already speaks much better than Gabe, so it's really small potatoes, in the grand scheme of things.

But then it hits me, the very real possibility of having three kids all with IEPs. I'm an old pro at it, but still. Three kids on IEPs. I hate having to deal with just one. The thought of three is overwhelming to me right now. I know, on an intellectual level, this is nothing. My kids need some support and I *know* how to get it for them, and how to work with them. This week, my friend had to deal with the terror of having a child with a brain tumor. I can't even imagine what this week has been like for her, and I feel a bit guilty that I am even the slightest bit upset over my kids - my funny, energetic, loving, HEALTHY kids. Teddy is helping me keep it in perspective. We are all healthy and together and that's the only thing that matters. All that other stuff is small potatoes. It's just that sometimes, too many small potatoes make me feel like . . . how I'm feeling today.