Thursday, August 30, 2012

Report Card Time

So far I'm not that impressed with Little Man's school's response.   Out of the stack 'o grants I found they "may be" interested in applying for one that helps special needs kids.  They selected 8 others that relate only to general education) which they would like me to do applications for.

They declined to have ANYONE attend the training I was going to pay for.

And my son's teacher sent me home a note yesterday telling me he is not allowed to bring his comfort item (small stuffed toy) to school even though he leaves it in his backpack during the day and only plays with it before and after school.  Why I asked?  Is he misbehaving with it - taking it out when he should not?   I was told - "No but it is a rule for all of the children and must be enforced for all of them".

Yeah  - I may be rethinking both the tape recorder and the lawyer for the IEP meetings.

I'm definitely not feeling the love. 

Wednesday, August 29, 2012

Good Idea or Absolutely Horrific?

A New Question of the Week for folks. 

I’m reading this book  Shut Up About Your Perfect Kids A Survival Guide for Ordinary Parents of Special Children by Gina Gallagher and Patricia Konjoian.  Because obsessively reading about FASD and special needs is what I do now.  My husband is hoping it’s a stage.   I’m only about 30% of the way through the book and so far I have mixed reactions.  First I have to say their take on how perfection obsessed our world is today is spot on and I love the idea behind their “Movement of Imperfection.”  The writing itself for some reason doesn’t snag me the way the Easy to Love but Hard to Raise did but that’s just style difference.  The content has been really good. 
Then I got to this idea – making up business style cards to hand out to people in the general public that seem or overtly act annoyed by your child’s disability.  The text on the card recommended specifically cites Autism but the idea is you can make your own for any disability.  This is where my “Hell yeah!”  /”No way in hell!” dichotomy kicked in.  I have not figured out how to resolve it after over a day of pondering.
On the one hand, I like the idea of setting the person straight in a low key way, which I’m unlikely to be able to do by speaking to them.  It’s a whole lot more likely I’ll end up arrested for assault if their judgmental attitude has hurt my kid in some way.   And I really do believe low key has a much better chance of actually increasing tolerance of difference than ” in your face” does.   Somehow once my child is personally affected though – the idea of education and promoting tolerance goes out the window and a female version of the Hulk comes to wreak vengeance a thousand fold for each tear.  I strongly believe that educating the public about FASD is VERY important.  (I could go off on a whole separate rant here about how absolutely criminal it is how little is known about FASD but I’m going to restrain myself and try to stay on point.  I think my daughter’s ADHD may be contagious!)  So a card that could be passed off as we hustle away before the “Don’t make me angry.  You won’t like me when I’m angry” transformation begins is a neat idea.
On the other hand – Isn’t that kind of like placing a large neon flashing sign over your kid’s head?  I don’t want Little Man known only as his disability.  He is so much more than that.  As he gets older wouldn’t my doing something like that make him feel even more self-conscious and “different” (different in the weird way not the ”cool, I’m a unique individual” way).  It also feels like it could come across as – I don’t know – kind of self-righteous and snotty which also would not foster much tolerance I am thinking.
I’m wondering what other people think.  Would you hand out a card like that about your special needs child?  How would you receive the message if someone gave you one?

Monday, August 27, 2012

Why I Get so Worked Up

Children affected by alcohol in utero are NOT a rare occasion. Each year in the United States, by the most conservative estimates,  40,000 babies are born with FASD.  (Centers for Disease Control and Prevention, 2010).  Recent in-school studies suggest that cases of FASD among live births in the U.S., previously reported as approximately 9 per 1,000 (Sampson et al., 1997) could, in reality, be closer to 50 per 1,000 (May, 2009). In addition, recent retrospective analyses of hospital admissions data indicate that under-reporting of alcohol misuse or harm by women may further disguise true prevalence rates (Morleo et al., 2011).  According to data released from the Centers for Disease Control and Prevention in 2012, thirty-seven percent of babies born in the U.S. are unplanned. Also published from current CDC research, 1 in 2 women not trying to conceive have reported drinking alcohol in the past thirty days.  Doing the math, as many as 18.5% of the babies born in the US could be accidentally exposed to Alcohol before their mothers even know they are pregnant!!!

If you want some comparison points, less than 1% of children in the US have Autism Spectrum Disorders or Asperger’s, 3% are diagnosed with Down’s.  FASD afflicts a larger percentage than all 3 combined! But the amount of medical resources and scientific research directed at FASD is miniscule compared to the others. In fact the only childhood affliction to outpace FASD is ADHD/ADD – and in many cases children being treated for this are in fact children with FASD.  Fully 80% of the trickle of money that is directed to FASD is spent on education campaigns to try and stop women from drinking while pregnant. Don’t get me wrong – I think that is important but SO IS HELPING THE CHILDREN THAT ALREADY HAVE THIS ISSUE.

What kills me how hard I have to fight for Little Man to get help anywhere no less in the school system. I mean I will take it out of the personal for a minute and just look at the numbers. If we take a conservative estimate - 7% of the children in the US have alcohol related disabilities - then it’s reasonable to assume 7% of the kids in our county do, yes? For our county that means 405 kids!!! If you want to limit that to just full blown FAS at 3 % we are still talking about 173 children. Heck if we want to arrow in on just the population in Little Man’s primary school and stick with the 3% you still have 15 and if you look at the full range of affected children you have 35.
(Since my husband is active with the local rescue squad and we have friends and relatives in the police and social services for the county, I’m pretty comfortable telling you that this area would have to be at or above the national averages for alcohol related issues.) 

35 children, 35! That's more than a full classroom. So why the hell am I the one educating my son’s teacher on FASD and what children with it need from the school and class room environment? This is a freaking epidemic people.   I don't think teachers or administrators are bad.  Most are pretty awsome in fact, but they are always stuck trying to do too much with too few resources.  That is what makes me so damn mad.
Since the key to getting people’s attention appears to be money – let’s talk cost.

FASD costs the US an estimated
$5.4 billion annually.

Surely we could spare some money toward effective interventions to cut down on that tab, eh?

Relationship Test

Yeah, yeah, I know you are not supposed to “test” relationships.   According to Psychology Today   testing only sets up roadblocks.  Well I say, phooey on psychology.*    I want to know just how committed my son’s school is to us.  So I’m testing them.  You know – the kind of “If you really love me you will…” test.  Actually, I have a series of tests planned.  **
First of all, I’ve offered to cover the cost of attendance for the person of the school's choice in a teleconference on teaching children with Fetal Alcohol Spectrum Disorder.  I’m not even asking them to put their money where their mouth is on this*** – just a ridiculously small chunk of time.   
Second, I’ve researched a number of grants the school could qualify for and requested time with the principal to review which he would like me to apply for on behalf of the school.  There are a mix of general education and special education grants there.  I’m really wondering which he’ll give the go ahead on. ****
Finally, and highest stakes, I am bringing a “special guest” to the upcoming IEP meeting for Little Man.   I’ve debated this one back and forth.  I attended a conference this summer where a professional Parent Advocate strongly recommended bringing both a legal representative (or advocate) AND a tape recorder to all IEP meetings.  She also recommended bringing goodies.  I’m going with the advocate and donuts.  I’m not quite ready to drag along a tape recorder.***** 

I’ll let you know how it goes.

*I really wanted to say something much ruder than phooey, but I’m working on self-censoring those words out of my speech since Little Man is still in the repeating everything stage.
** Of course I do.  Have a plan work the plan - its the key to understanding me every time.
*** It’s not like I’m expecting them to propose, or even move in together.  Heck, I’d barely equate this with going steady. 
**** Ok so this may look kind of unfair – along the lines of your kids asking you, “Which of us do you love best?”  The thing is there is a right answer – I love you all – i.e. apply for them all and just see what shakes out.
***** I’m not so sure I want a taped record of ME at these meetings. 

Thursday, August 23, 2012

Confessions of a Recovering Perfectionist

I am so totally NOT the expert on being a mom to special needs kids.  I wanted to say that straight out just in case you had missed the subtle signs for yourself.   This is hard for me to admit because I have always been the A plus, type A, on the ball, I got this, look at her go type.  It is very hard for me to admit when I’m not totally and completely competent at something, especially something that matters to me.  Asking for help with something is a skill I have just never needed and thus never developed before now.
One of the basic tenets of Special Mom-ing * I am learning is that you have to remember you are in it for the long haul.  This is a marathon not a sprint. ** So you have to know when you are close to the end of your resources and ASK FOR HELP.  You also have to know when it’s time to throw the towel in – not forever - but just for a while.  You know, pry your clutching fingers off the steering wheel and let go.  Give someone else the controls and take some Me time.  Rest, Recharge.  This is also a totally foreign concept to me. 
My poor husband tries to tell me “Relax.  Don’t worry about it.”  At which point I usually snarl at him, “Who is going to worry about it then, You?  Them?  The housework, homework, health insurance, finance FAIRIES?”  To his credit my husband has never replied, “No silly that’s covered by the ELVES remember?”***  Instead he clears everyone who might get run over out of my way or digs in to help and he’s usually pretty good at telling which strategy will work best. 
I’m working on getting better at the whole Me time thing.  My husband recently convinced me to leave both kids in the care of their grandmother for three whole days and two nights.  We sat discussing it the first night at supper and realized, it was the first time we had been anywhere together without the children IN THREE YEARS.  We slept in, moseyed through shops we could never take the kids into****, looked in museums that would have had them squirming and whining in minutes,  ate some really fantastic food which despite being absolutely delicious would have caused a huge kid eruption, and generally just did whatever WE WANTED TO without reference to their likes, dislikes, attention span, etc.   We had a wonderful time (and sex).  The kids did not burn down the house, get run over playing in the street, or get abducted by aliens.*****  Grandma even offered to do it again sometime … the year after next … maybe. 
What I really need to do though is find some day to day way to recharge that I can work into an already hectic schedule.  Expensive, long weekend trips aren’t going to come around with any regularity.  I’m gonna need help with ideas though.  Did I mention I’m not a natural at this? ******

*Hey, I like that!  I may have coined a new phrase for myself – I’m not S for Supermom,  I’m S for “Special Mom”.
** Actually sometimes I feel like “The Trail of Tears” would be a better name but that would be disrespectful to appropriate.  Ditto for the Bataan Death March.
*** Which is a very good thing because while I find it funny sitting here now that would probably get him killed in the heat of the moment.
**** Bull in a china shop doesn’t even begin to cover it.
*****  They did have ice cream before dinner and skip brushing their teeth along with some other infractions I’m sure I have not ferretted out yet. 
****** Admitting you have a problem is the first step right?

Better and Better

Yesterday was the first day of school and we accomplished waking up, getting ready, and drop off with no tears on anyone’s part.  Even Mom managed to stay dry eyed.  Mom did spend the day flinching every time a phone ring though.  With Little Man having had so much trouble last year and still not fully potty trained and Big Sister spending her first day in Middle School in a whole new town, I half expected to get a call that I needed to pick up at least one hysterical child.  Hey – plan for the worst hope for the best right?  But my only phone call related to children or school was Nana calling because my husband forgot to add her name to the approved list at the Middle School.  She wanted to drop in for lunch and could not.  I’ll get that taken care of for tomorrow but I think it may have been a good thing she could not today on the first day.
Middle School is so tricky.  Having Nana drop in to Primary or Elementary School is cool but Middle School?  Umm, I’m not so sure where that cut off is.  I’ll let our daughter drive that decision.  ‘Cause getting labeled a “baby” or “uncool” the first day is not going to promote a happy transition for her.   I worry for her because not only is she ADHD, she has a lot of anxiety issues and transitioning to a new school at the same time she transitions to a new home (from Mom and Step dad’s house  to Dad and Step Mom’s – that would be me) is a lot to take on all at once.  Oh and the hormone typhoons they are a raging as well.
But my ADHD Middle Schooler came home and said she had a great day.  She already knows a girl in her Band class and she met another girl she likes – can she invite them to her birthday party?  “Oh and this nice boy whose gonna be a friend, but not a boyfriend, just a friend in my class whose like a boy, can he come – oh maybe he won’t like a girly make over party that’s right but can he come over some time? And French is so awesome because we never have homework ever and I wanna watch TV now if that’s ok?” Whew!
Little Man had a good day.  He was happy to see me and said school was “fun” and that he “played”.  His teacher said he did well and had no toileting accidents.  (Why is that their primary concern!?!)  I’m just happy he seems happy.  He did not remember the names of any of the kids in his class – No idea if he asked their names but even if he did of course they did not register at all.  Sigh.  But the parents of one of his classmates did contact me and suggest that the boys should get together for a play date sometime.
 I’m a little worried that he had no bowel movement at all yesterday.   I don’t want to get into withholding and all the trouble that causes again.  But I’m telling myself I am not going to be as obsessed with Little Man’s toileting issues as the school seems to be.  If he doesn’t go today we’ll up his usual Miralax dose and they will just have to deal with the consequences the same as we do.  So overall – so far so good – Mama’s feeling cautiously optimistic.

Wednesday, August 22, 2012

Question of the Week

I saw this “Question of the Week” **posted on line:
1.     Question of the week: if you could ask your child’s school principal or district superintendent to do 3 things that would improve the life of your child (or others) with LD, what would they be?
And I just had to answer:
#1  Please cut down on the amount of crap you hang on the walls, ceiling, doors and windows of the class room.  This is a really simple absolutely no cost change.  I feel assaulted by all of the stimuli - I have no idea how kids with sensory problems cope.   Research has shown that a lot of children with LD have issues with this, especially kids with ADHD so its not like I’m asking you to do it just for my kid’s sake.
#2  Stop trying to tell parents "We just don't do that here." whenever we ask for an accomodation our child needs for their disability.  You know it’s a budget issue, I know it’s a budget issue, and we both know that regardless of the money problem  if its required by IDEA, Title 5, or ADA you are going to have to do it eventually anyway so stop wasting my time with 40 million meetings when we all know the outcome.  If you let us spend that energy lobbying to get you more funds you'd be better off in the long run and so would the kids.
#3  contrary to popular opinion women do not lose all brain function when they became a mom.  I have a freaken Master’s degree IN EDUCATION - stop telling me how you guys are the experts and I just have to rely on your judgment and LISTEN to me.  I am the expert in my child’s particular pattern of learning challenges.  When you produce someone with a degree and experience in teaching post institutionalized, internationally adopted children with FASD and sensory integration issues then you can tell me you have the expert. 
In fact, stop doing this to all parents regardless of their education level or age or gender - they live with the child 24/7.  They are the expert in their child.

What would your suggestions be?

** this question of the week was originally posted by Adrienne Ehlert Bashista co-editor of Easy to Love but Hard to Raise.  You can find her on facebook at!/easytolovekids and on line at or

I follow all three.  The help, ideas and support there are fantastic.

Tuesday, August 21, 2012

Brighter Days

“Gosh you’re a real Debbie Downer on the new blog, eh?” a friend said.  So I reread the whole three posts I have so far and well, yeah I guess I have been.  Sorry about that.  It’s just where I have been lately.  FASD is a never ending cycle of unpredictable ups and downs and we’ve been on the down sweep for the last few weeks.  I can see light head, and I’m pretty sure it is not an oncoming train so I should lighten up a bit soon. 
Tomorrow is the first day of school.  I’m working my way toward cautiously optimistic on that front.  Little Man and I have been going up to the school every day in the afternoon.   The teachers are there setting up their rooms and having meetings.  We don’t intrude on that, just walk around and talk about who he knows, Ms. Becky his speech therapist is in this room, that room will be his new kindergarten class, here’s the music room, blah, blah.  We play on the playground some too and talk about how it will be fun to have time there at recess each day.  Yesterday there were a few other kids around and Little Man introduced himself to one.  Yippeee!!  And he gave his new kindergarten teacher a sort of halfhearted hug.  Hey its progress!  Mom is trying to thaw out toward her too.  Her initial comment of “I’ve been doing this for 36 years.  We’ll be fine” was probably meant to be reassuring not the brush off it felt like.   He does need structure and stability and after 36 years she probably has that down, right?
We also had good news about him being accepted into the speech program at a nearby collage.  This was a find that still blows me away.  After struggling to fund $150 per session speech therapy out of pocket for almost a year Little Man’s special ed. teacher told me that a program at the college selects a few children every year to work one on one with their graduate students as part of their teaching certification program – FOR FREE. 
Three hours a day five days a week – one on one speech therapy – FOR FREE!  Anyone with special needs children needs to get their backsides to the colleges near them and see if there are programs like this for your child’s needs.   If there isn’t you need to suggest one to them!!  For real people!  I would have paid $13,500 for this amount of one on one help if I had not found this!!
Anyway with his teacher’s recommendation and my impassioned pleas we managed to get Little Man accepted to the summer program.  He made great progress and more importantly he LOVED it.  I have been holding my breath waiting to see if he would get into the school year program as well and he has!!  It is not a pain free program for us.  The financial burden is gone but the school is 45 minutes away so I did have to negotiate an altered work schedule so I can get him there and back.  Because of that It will only be twice a week not every day like the summer program but I am still thrilled. (and worried about if my boss will get sick of it and renig but that's aproblem for another day!)  Little Man does receive speech therapy at the school but it is half an hour of group time.  That was just not making a difference for him.  This summer program has and God willing the school year program will continue to even though its not as intensive as the summer program.

So, brighter days ahead, and darker, and brighter, and darker, and brighter and .... you get the picture.    

Monday, August 20, 2012

Lucky Mom

I’m a “lucky” special needs mom.  I know this because I get told all the time.  I’m lucky my child isn't blind, or deaf, or mute.  I’m lucky because he has no mobility impairment.  I’m SOOOO lucky that his IQ is in the normal range.   “At least he looks normal” someone said.  (Yes I let them live – it was a phenomenal exercise of self-control let me tell you.)  I’m lucky that when he rages or has an emotional melt down he doesn't hurt himself or others. (Now)  I’m lucky he doesn't curse at me. (Yet) I can’t even remember all the ways I've been told how “Lucky” I am.
You can probably tell from my tone that I have an issue with this.  First of all – how is watching a beloved child struggle and suffer through a world that is largely indifferent if not downright cruel to them, lucky?  Second – my son’s seeming normality is two parts heroic effort on his part, one part endless work on mine, and three parts the invisible nature of FASD.   It is in no part attributable to luck. 
 I think all – well ok let’s say most - mothers feel some level of disengagement from the rest of the world.  I think that the bond of maternal affection is so strong that it puts their child forever between them and the world to some degree.  Special needs mothers are another degree removed.  Not only is their child a filter on the world – the specific disabilities they cope with are an additional filter layered over the lens.  With a child who’s primary disability is brain damage – damage that leaves them with a normal IQ - the very “invisibility” of the disability creates even more separation.   Dealing with the constant  misunderstandings and judgments of people who believe your child CAN do things and just WON’T,   when you know they want to they simply cannot, leaves you too exhausted (and frankly jaded) to even try to connect. 
My son has a sweetness of spirit and a loving heart that never ceases to astonish me.  I don’t know any adult who could endure the things he has been through and retain the basic goodness he radiates.  When people tell me how lucky I am – I don’t even try to explain any of this.  I AM a lucky mom but it has nothing at all to do with the things they attribute it to.  I just look at my son and smile.  In the end I guess it doesn't really matter that they will never understand WHY I am so lucky.  I know.

Friday, August 17, 2012

A Life of Extremes

When I was in high school I wrote an essay titled Fire and Ice.  It was about how I planned to live at emotional extremes – to be “really alive” all my life.  I suppose it was decently well written for a 17 year old.  I have always been a competent writer (although not the best of editors).   I’m positive the theme and its expression were overwrought in the way only a teen age girl can manage.  I remember my teacher being considerate in her commentary.  She praised an elegant turn of phrase and corrected the spelling issues (which still plague me – thank God for spell checker).  She also gently advised that while it might seem that only those extremes of emotion were “really living” there was a lot of life to be experienced in the spaces between them.
I appreciate her advice a lot more now, at 40 something, than I did then.  It took too many years, in retrospect, to come to that appreciation.  In fact, I wallowed in my extremes for most of my twenties.  I finally got tired of it. No big critical event.  No dramatic turning point.  It just wore me out.   I’ve spent a bunch of years between then and now carefully pruning drama out of my life.   I found through experience that quieter feelings like contentment or serenity, while more delicate and subtle in flavor, are just as exquisite when you take the time to savor them.
Which makes it more than a bit ironic where my life has led in the last three years.  Love and Terror.  Joy and Despair.   My son brings me to extremes of feeling constantly and almost always together, like they are forged into an inseparable alloy.    These composite emotions … I find it so hard to explain them.  It seems like there should be some completely new and unique language to describe them.   How can the regular and every day words I have always used encompasses things so immense and alien?   Even less pedestrian words like fervent, passionate, ardent are not strong enough to describe the intensity with which I feel.    Bizarre, foreign, singular - they don’t begin capture the strangeness of the pairings.
I feel like these emotional hybrids have cut me off from the rest of humanity a lot of the time.  I can’t relate to the experience of simple undiluted emotions any more nor explain myself to others.  Someone tells me how happy they are about their baby taking its first steps and I marvel that while they are rejoicing over the accomplishment they are not also nearly crippled with fear for all that those steps might lead to.   It’s like Little Man was not the only one affected at the cellular level by his prenatal alcohol exposure.  The alcohol that killed his developing brain cells has seeped into me through the bond of love – mutating my emotions and leaving me forever changed.  I would not undo that change – even if it were possible.  I exult in my love for Little Man just as he is even as I mourn for who he should have been.  The closest I’ve ever come to explaining how I feel is that lame Facebook relationship status “It’s complicated.”

Back to School Tears

Not for the kids - for Mom.  No, not tears of joy or relief, tears of genuine sadness and maybe a little dread.  Are you surprised?  You are probably not if you are a mom of a child on the FASD spectrum.   For those that aren't though, I'll explain.

Last night was back to school night for my Little Man.  He's going to be six in September.  He's going to be doing kindergarten for the second time.  I'm happy about that - it was a hard fought battle to get the school to agree to retain him but he's in no way ready for first grade.  He’s not potty trained yet, although we may be getting close.  He will tell adults now when he needs to go.  Usually there is not quite enough time to get him there.  And he still withholds his stool while on the potty and waits till he gets up to go in his pull up.  He still sings and talks to his stuffed animals and imaginary friends more than any real people.  So it was not his retention while his little class mates moved on that upset me.

What made me cry, then?  It was seeing all the hard won progress he had made over the summer wiped away by walking though those doors. 

We spent countless hours this summer working on speaking up – having the confidence to speak loudly enough to be heard.  We, through slow and painful effort, had eliminated all the baby talk and nonsense words and built an understandable vocabulary he used to really interact with us.  We worked on connecting skills like:  role playing how to make eye contact with people when talking to them, how greet people, how to ask their name and give his, how to invite someone to play with you or ask to join them. 

Little man was demonstrating these skills too.  Everywhere we went this summer we would see a little more of them come out.  He was greeting people at the grocery store or doctor’s office.  I did a happy dance the first time he asked children their names and if they would like to play at the park. 

Last night though, he plastered himself to my leg as we passed through the school doors.  When teachers he knew last year approached he hid his face.  If I prompted him to speak to them he mumbled so low you could not hear – not even when they crouched to his level with their ear near his face.  He would not interact with any of the children and began to babble nonsense words to “Beedee” his imaginary friend nonstop.  And of course we had the obligatory accident in his pants in the middle of events plus a melt down over needing to be changed.

So – Why did I cry?  I cried because I don’t know how to make school better for him.  I don’t know how to make him feel safe enough there to bloom the way he does at home.   I don’t know what will become of him if he is never able to be the lovely little person he is in private in public as well.   I can’t seal him in a bubble no matter how I want to.  I can’t make people like or love him.  I can’t force them to be kind and understanding.  And I’m an older mom – the cold fact is I won’t be around forever to care for him.  What will happen to him when I’m gone?     
After we got home I had to go out for a 20 minute drive – so I could cry. I don’t like to cry in front of him.  I don’t think he would understand why and I don’t want to make him feel bad about himself – like he makes mommy sad.    It isn’t him that makes me cry – it’s how the world affects him.