Wednesday, February 1, 2012

Green Eyed Monster

We have had a visit from the Green-Eyed monster.  Jealousy, envy, and even rage are upon us, and I don't mean my kiddo. I am the guilty party. 

We just passed the holiday season, a season that is supposed to be about thankfulness and celebrating the blessings in our lives. I confess - I have failed miserably.   Truthfully, the holiday season was brutal. My daughter has little tolerance for groups of people and a lot of noise.  At the Christmas get together with family,  she actually put herself to bed at my sister's house.  Not in a quiet, slipping gracefully away kind of way, but a very dramatic, the whole world must know how disappointed I am kind of way.  Ditto for new year's eve, at our own house, with her friends in attendance.  It pains me to see her suffering.  She gets so anxious before any event that it consumes her mind.  She was one step away from a full on panic attack when our guests were late.  It makes it very hard.  I have an amazing extended family and they are all understanding, but it still robs me.  Watching my nieces who are two years younger; reading my friend's facebook post about her daughter's  'A' on a math test; these are the things that set me off.

My heart really aches when I see other moms barking at their kids for the silliest, stupid stuff.  Don't they realize how blessed they truly are.    Can't they understand that the issues they are bitching about are so pointless.

Jealousy is ugly, but it is so hard to sit here at the end of a really stressful day at work, in the middle of fighting a fight I don't want with the special school district, dealing with a kid who won't stop kicking the table or screeching in her high voice. I would love to snap at her, but I have learned long ago that is just makes matters worse.  The fastest way to a meltdown is for me to raise my voice. Sometimes I just want to scream, or vent.  I suppose that is exactly what I am doing here.

I don't want to be this way, so in an attempt to evict this green eyed monster, I have decided to turn my thoughts to things I am thankful for:

- My daughter is very easy to put to bed. When she is tired, it is pajamas, teeth, bathroom, story, bed, and out like a light. Sometimes she only does the last part.

- My daughter loves broccoli and she eats all that other uber healthy stuff with very little complaint.

- My daughter likes to follow rules.

- She lets me chose her clothes.

-  My daughter is not shy. She has her own special charms. The other day we were going through the checkout, and my daughter was up at the front of the cart - talking to the clerk as she always does, outside of my earshot.  I don't know what she said, but when I got up there the clerk told me how unusual my daughter was - and a good sort of unusual.

-  My daughter is never purposefully mean.  Thoughtless sometimes, but never mean.

-  She has no problem taking pills or vitamins.

- My daughter says what is on her mind. A few weeks back, while attending church, my daughter was up at the front during little worship.  The pastor, after discussing what Christmas is really about, asked if we follow man's will, or God's will.  Apparently my daughter did not like the choices as she announced with much conviction "Santa's". She got a chuckle from the congregation, and the pastor- calling her by name, spoke of his delight. 

-  She knows everyone, or is determined to. We were at the post office sending out some xmas packages, and my kiddo gave the postal clerk a little grilling " Do you remember me? I was in here last week?"  She fully expects people to know her, and she gets results.

-  She always knows where I parked the car, and can always tell if I am about to make a wrong turn.

-  I never need to drag her out of bed, and she never makes me late.

-  She has made me a better person (mother) and enabled me to see what is important.

-  She loves me. . . .  enough said!

Wednesday, October 26, 2011

Random Thoughts

I have had a lot of thoughts running around in my head lately, so I thought I would just jot them down.

Are we geared to be content? If we were all satisfied with our stations in life, would we ever strive for more? Wouldn't society just stagnate? Would we have new inventions, new experiences, new buildings? Perhaps not being content is what led to our development as a human race. I have a desire to simply be content, but maybe that is against human nature, and something I should not even long for.

I have had occasion to meet a lot of parents of these special kids, and I have discovered that these moms are pretty amazing. They are forceful, persistent, organized, and patient. They would make amazing employees, or business owners for that matter, if they weren't so darn busy taking care of their kids.

Education: (Venting alert)
Why are all of the public schools geared toward one type of learner, the left brained learner? There are 3 public schools all in about the same distance from my house. Why can't one of them have a right brained curriculum. I think we can tell at kindergarten if our kids are left or right brain, and fragile x kids tend to be right brained. Look at all the different kids who end up in trade schools in high school after struggling for years with the existing curriculum. These are really smart kids, but after years of sub-performance, their confidence is shot, and they end up as 'behavior' problems. This could all be averted at an early age by sending them to the right school. There is a huge section of kids with potential that is not being tapped. The curricula are out there, my daughter went to a Reggio based preschool which actually worked well for the way her brain is wired.

I am locked in to attending a public school to achieve the special services my daughter needs, but it kills me to pay my taxes to a public school system that is failing so many of these kids.

Report cards:
What a waste of paper.  All they tell me is that my daughter is below grade level.  I already know this.  It would be helpful if they told me what she can do - what level is she at now?  Same for IEP's.  What does 'making progress' actually mean?  And why is it relevant that she can regurgitate x amount of words in so many minutes?  What does that signify?

Respite and Guilt:
I spend so much of my time thinking about, researching, worrying, sharing stories with others and talking about Fragile X.  Sometimes I need to get away from that world, and hang out with strangers who know nothing about it, or declare a 'no discussion' zone.  The problem is that I feel guilty when I do that,  like I am not doing everything I can for my kid.  I also feel guilty leaving my daughter with babysitters, although she doesn't mind.  I do not have the luxury of having close family members that can watch my child.

As parents we are already strapped down with so much guilt about how our defective genes caused this burden for our kids. It is a hard emotion to overcome. I do know, however that the respite helps me to recharge and I need that to be a better, and more positive, person for my kid to be around.

Could be worse:
Even though my daughter has fragile X, I am fortunate that she is high functioning for this syndrome. There are others who have it so much worse.  I was sitting around some DS parents at a therapy session, and they were talking about the kids who are much worse than their own.   The funny thing is, that almost everyone I meet says this.  There is always someone who has it worse. Who is the person at the bottom of this - who has it the worst?  And does that person think they have it the worst or do they think that is someone else.  I guess it is a matter of degrees and what you hold as important.  One of these boys can barely speak, and my daughter never shuts up, but this boy can read at a much higher level than my kid.
My sister has 2 kids who have kidney conditions that required transplants, years of dialysis, many hospital stays and near death occurrences.  While sitting in a waiting room with other parents, she was always the one the other parents looked too, thankful their kids weren't like that. She certainly didn't feel like she had it the worst.  Her kids were smart. They had friends, and when they were well, a fairly high quality of life. They are both in college now, leading independent lives.  It comes back to your own values.  My niece and nephew have a medical condition that can take away their life.  My daughter is the healthiest kid I know.     

Wednesday, October 12, 2011

"My Fragile X Made Me Do It!"

These are the words that came from my daughter's mouth this summer when she got in trouble at camp. After setting her straight about expected behaviors, no excuses, this really made me pause. Is my daughter getting special treatment because of this one little chromosome. Am I treating her differently than an uneffected child because of things I think she can or can not do? How are my expectations affecting her life? 

I already know that it is having an impact at school.  Last semester, I received a call from her teacher about an altercation with a fellow student.  This other student was suspended from school, but my daughter was forgivien because "she can not control her behavior, and the other child can".   Part of me is glad that she did not receive this punishment, but I have to wonder if it is really true. I know for a fact that I can not play tennis.  I have no depth perception, so I cannot tell where the ball is in relation to my body.  I also know for a fact that I can not give my daughter multi-step instructions. She would never be able to remember all of them, and would not be able to abide. There are limits.  The hard part is recognizing where they exist. 

I heard a tale this summer at a symposium that I attended.  One of the speakers, a mother with 2 effected boys, was asked a question about potty training.  The first one, she said, was very normal. He was trained by 2 1/2 but that was before we knew about Fragile X.  The other boy, who was diagnosed as an infant, took 7 years.  Clearly, an expectation affected the outcome.  I hear girls with fragile X are poor at math.  I happen to be very good at math.  If I make an assumption that my daughter will be bad at math, am I dooming her to a foregone conclusion.  I am certainly frustrated by her difficulties, because it is something that I found so easy,  but just because she finds it difficult, does not mean that it will not fall into place.  Do I keep pushing her, and patiently spend 40 minutes with her to complete a task that should take 10?  When do I push, and when do I retreat and formulate another plan?  Reading and writing are another issue with her.  We are now writing letters in rice, and building them with play-doh, anything to add a tactile element to the process, but I can't say that it is working.  She has sensitivity issues and can't stay with it for long -  or does she?  Is this another convenient excuse to get out of doing her work?   She has never liked play-doh.  But she also has a very short attention span and never stays with any project for long.
My daughter is a master at manipulation and negotiation. She has all kinds of tricks up her sleeve to help hide her shortcomings. She is very good at getting people to do things for her and she does it with sweetness and charm, which may prove useful in future life, but I don't feel like it is something I can support.  She is well under way into the new school year, and she is really testing all her teachers.  Things are harder, and she is feeling overwhlemed, so she is pulling out all of the stops to avoid doing her work.  I am getting a lot of calls about arguements and refusals.  I know this is her way to gain control of the situation, and to avoid demonstrating her inadequacies.  She is 8 years old, and self realization and esteem are becoming issues this year.

She is always changing the subject.  Is this a part of fragile X because she can not remember the current conversation, or is she simply diverting to avoid something she doesn't want? When she was 4 years old, her pre school teacher was trying to get her under control.  In the middle of her tantrum, she blurted out - How is your baby boy?  Considering that his son was in the hospital, this remark was enough to send him off course.  Diversion and avoidance were successful.  Was this a purposseful action on her part, or did the idea suddenly pop into her head, and she impulsively blurted it out?  She was only 4.

She knows exactly how to push buttons, and mine more than anybody else.  I have to take a hard look at myself, and really figure out what type of ground work I am laying down here. I have to admit that giving in sometimes certainly makes my life easier. I bet I am not the only one who has tied a shoe to avoid being late. I know this is an issue all parents face.  I just wish I knew more about what was going on in her head, so that I know if something is futile, like me playing tennis, or just simply difficult. How long do I pound my head against the wall? 

On a good note - she has never repeated this excuse.  If this truly is manipulation, then perhaps my daughter is a LOT smarter than even I give her credit for. People say she misses social cues by not reading faces.  She is reading something, because she is almost telepathic when it comes to reading emotions.  Is there an oscar catagory for this because I am getting really good at acting like I have none.       

Monday, October 10, 2011

The Key To Happiness Is....

I don't have the first clue.  I just thought I needed a good tag line to get people to come back to my blog.  I have been away since the spring.  I would like to say that I had a nice summer hiatus, but to be honest my summer was not good.

People always ask "Enjoying your summer?  It must be so nice to get summers off." Well, as a teacher, you don't really get them off,  you just have to spend all summer doing the crappy stuff.  Add to that the high heat and the low budget,  there wasn't a whole lot to do.  

"It must be great to spend all that time with your daughter." Yes, I had the whole summer to hang out with my kiddo, which was ok some of the time, and extremely challanging the rest of the time.  This was the first summer after our diagnosis, and it was a chance for me to get up close and personal on a 24/7 basis with all that Fragile X means. During the school year, she went off to school and I went off to work, and my mind was occupied by other things. Summer was a full on reality check.  Last summer she was in summer school, but that was cut this year due to the state budget.  I am not cut out to be a stay at home mom - and special snaps to all those ladies who are.  It is HARD.  The summer finally started to get better in August, and I think that is when I figured out that I had to stop fighting my situation, and just accept it.  I thought I already had,  but with all the close contact,  loosing my patience everyday, facing new realities and shortcomings everyday,  I guess I didn't realize.

Acceptance.  That is a tough thing to accomplish.  While it may not be the key to happiness, I would have to say it is the key to contentment.   When I stopped being jealous that my friends could stay out late, or go to movies, things got better.  When I stopped caring that invitations for play dates and birthday parties did not come our way, things got to be better.  When I just let me daughter be, and stopped trying to fix everything, things got better.

We also spent some time adjusting medicines to see if we could find something that might be a little more productive.  We discovered that higher doses of stimulants made her so anxious she became paranoid, and that withdrawel from Abilify is very nasty, and we could not last more than 2 days before we went back on a minimum maintenance dose.  With the onset of the new school year, we decieed to move forward with an anti-anxiety drug, but I have to admit, we are not seeing benefits yet,  just an increase in hyperactivity. Exactly what we do not need.  This new drug seems to have sent us on a vicious cycle.  Higher stimulants make her anxious, requiring anti-anxiety meds.  These meds increase her hyperactivity and lack of focus, requiring higher stimulant doses.  This is a completely unsustainable cycle.  We will try it out for a few more weeks, as they say it takes 4-6 weeks to see full efficiacy,  but we may be back to square one.  It is so frustrating when you realize a medicine you had hopes on just doesn't work.  Back to acceptance again.  Stop trying to fix it.

There is one more event that happened this summer, and that is the introduction of the IPad into our life (and Netflix).  I think that every person with disabilities should be issued one of these.  Mine is merely on loan for the time being, but I do not think I could live without one now. There are so many apps that can be beneficial. If nothing else, Steve Jobs legacy will be helping out these kids in ways he never even imagined.  I saw it give a voice to another little girl who couldn't use her own.  This is not a commercial for apple, but this one device, that can keep up with the 5 minute attention spans, and can sneak in some reading lessons and counting lessons, etc. brought a little sanity in my life.  Dare I say ...  the key to happiness is an IPad?  

Thursday, June 16, 2011

Missing parts

A few weeks back, we were getting ready for the Fragile - but not broken -  X walk.  While the rain was pouring down outside, my daughter asked "Mom, can they put the missing parts back in?" Even though she didn't say it, I swear her next words were "so I can be like the other kids".  I was completely speechless, and that is rare.  We weren't really discussing Fragile X, but she knew what we are getting ready for, and she obviously was thinking about it.  I can't say that I ever really discussed it with her, other than saying that God made her a little differently.  Obviously she has been listening in to my conversations with others when I describe Fragile X.  This is the girl who gets zeros on all her report cards - below grade level. Maybe on letters and numbers, but I swear she can read minds.

The next monday morning, on the way to school, she said she wanted to be a doctor.  Well I asked her what kind, because unlike most kids, she has seen many varieties. She said she wanted to help people.  Speechless again.  My unspoken response to her question before, you see, was that doctors are working on it - because they want to help people like her.  How many pieces can a heart break into?

While I carry this hope around with me, I do not want to tell her.  I want her to accept who she is and not be relying on a Dr's future fix. It is hard enough just being a kid today.

By the time the walk started, the rain had stopped, the sun was shining and it was wonderful to see all the people who came out to support these kids.  And snaps to everyone who put the walk together.  Thank you to everyone for your support and your efforts.    

Tuesday, May 3, 2011

The Electrocute Snake

The other day, we caught a break in the weather and I took my daughter to the park.  She managed to find a few boys to play with - one her age and one a little older.  They were very nice boys and they were getting along very well.  One of the boys had 2 wooden snakes with him, the kind that are made up of small wooden segments painted like a snake that allow the snake to bend and 'slither'.  This boy offered one to my daughter, which she gladly accepted.  Her main joy in life is playing with other kids. After a little while she announced they should play "electrocute snake".  I have never heard her say this word before, so my first thought was the snake would be electric and would light up. The next thought was that it was simply  'cute'. When the boy asked her what she meant she announced,  "You know,  if you touch it you get electrocuted and you DIE!"   Brilliant.

Am I really celebrating the fact that she is playing a game that involves pretend pain and death.  You better believe it.  My fragile X kiddo typically plays in an organizational manner.  Pack up the baby and her clothes and move to the other side of the room.  Unpack,  change her clothes, re-pack and move again.  Or perhaps she just arranges and rearranges the furniture in her dollhouse.  There is actually very little role playing (or pretending) taking place. She just organizes things.  The type of play where you imagine you are something else and carry out a series of fictitious events involves a much higher level of thought process.  It is called executive functioning and is governed by the part of the brain that is very weak in my daughter.  She has almost no short term working memory and sequential thinking is very difficult, but it is critical in pretend play. You have to remember what you just did and keep building on the story. When she demonstrates something that involves this type of functioning I am very excited.  It also shows that she was able to stay in context with the boys (they were playing 'war') and come up with something they might like to play.  This is very sophisticated engagement with others - another thing these kids are poor at.   Bravo! Maybe I need to let her play with snakes (and boys) more often. Or not!

Tuesday, April 26, 2011


I was enjoying the company of friends the other night and the conversation turned to heaven.  We all assumed there was one, so we were wondering what heaven would be like?  It didn't occur to me at the moment, but we all assumed we would be going there too. I hope we weren't presuming too much.

One particular friend has children with developmental issues, and his view of heaven was getting to meet his kids without their genetic flaws, and knowing them how they were supposed to be.  My first response was they are already perfect in God's eyes. I hate the "what if" or "only if" or "this is how it should be" thinking that always leads you down a dead end. I have not stopped thinking about this though.  They are perfect to God - but is it God's heaven or our own?  Wouldn't heaven be our own heaven?  Is heaven where we find happiness? Total bliss? Are we at our best physically?  Mentally? Do we get to meet our parents at the prime of their life? Our grandparents?  Can we meet Michelangelo or Abraham Lincoln? Do we play the piano perfectly? What about tennis? God never intended this for us - but wouldn't that be heaven?  What is heaven? Too many question marks.

One more. . . .

Do I really believe?