What can you do?

Little Man had surgery today.  He broke his nose this spring and as a side issue to that he developed a cyst between the bridge of his nose and his left eye.  After multiple rounds of antibiotics and draining the fluid from it by needle once, the doctor finally decided the only way to fix the issue was to put him under general anesthesia and excise the cyst. 

I think any surgery for a child, no matter how minimal, is emotionally fraught for the parents.  I may be biased but I think with a special needs child there are – well - maybe not more worries but special worries.  Because Little Man understands and operates younger than his 6 years it was very hard to explain to him what was going to happen.  I know his ENT doesn’t see him enough to understand his limitations so it’s not all that surprising he was unprepared for how freaked out Little Man was by the anesthesia mask.  I did warn the doctor that although Little Man listened calmly to his description and seemed unconcerned, that it was not going to go smoothly once we were in the operating room.  I don’t think he fully believed (or maybe just did not fully appreciate the magnitude of) my warning until I was pinning my screaming, flailing son to the gurney while he and the nurse tried to still his thrashing head enough to get the mask in place.  I cried the whole time I pressed his little body down and sang his favorite lullaby and eventually he succumbed.  I then cried my way out to the waiting room. 

Unfortunately - in addition to the delightful start to the process - Little Man had a reaction to the anesthesia and stopped breathing during the surgery so they had to intubate him.  What was supposed to be a 30 minute procedure ended up taking an hour and a half in the procedure room itself and four hours in recovery.    Little Man appears fine now, other than a sore throat and some itchy stitches (and he would have had the stitches regardless).  Mama however is traumatized by guilt - for restraining him while he cried and begged me to help him and they gave him the gas that could have killed him, by the scar he is certain to have, and by his pretend play since we got home, where he holds down his screaming teddy bear and smothers it with a pillow.  So much of my parenting is second guessing.  Is it like that with neuro-typical children?  I don't have any so I just don't know.

What could I do though?  I could not leave the cyst unaddressed.  We had tried that for months and at one point it swelled so large that it was affecting his vision.  That is when they did the needle draining.  Maybe if we'd done this sooner he would not have the scar.  It would not have gone any easier but I didn't gain anything by waiting either.  I guess I could have let strangers restrain him.  But wouldn’t that just be sparing me – not him?  I guess I should have tried harder, more, longer to make sure his specialist understood how the process was going to effect him emotionally.  I get so tired though of educating sometimes - especially the doctors and educators. 

Reluctance by Robert Frost

Out through the fields and the woods

   And over the walls I have wended;

I have climbed the hills of view

   And looked at the world, and descended;

I have come by the highway home,

   And lo, it is ended.

The leaves are all dead on the ground,

   Save those that the oak is keeping

To ravel them one by one

   And let them go scraping and creeping

Out over the crusted snow,

   When others are sleeping.

And the dead leaves lie huddled and still,

   No longer blown hither and thither;

The last lone aster is gone;

   The flowers of the witch hazel wither;

The heart is still aching to seek,

   But the feet question ‘Whither?’

Ah, when to the heart of man

   Was it ever less than a treason

To go with the drift of things,

   To yield with a grace to reason,

And bow and accept the end

   Of a love or a season?

Happy Birthday Daddy.  I still miss you. 

Mazel Tov

I need to start buying cigars.  Oh and call CNN.  Little Man is apparently pregnant.  He has been walking around for the last three days inviting everyone to feel the baby in his tummy.  I have no idea what had brought on this burst of fertility.  He does have 2 baby cousins but since they are 10 and 7 months old it seems a little late for that to be the driver.  I’m not aware of any other pregnant woman he may be seeing.  Since he seems to give birth on average twice a day I probably should also be stocking up on diapers and formula.  Unless he reverts to wanting me to breast feed all his babies.  When his cousins were first born that was his obsession.  He would walk up and shove stuffed animals down the front of my shirt because they were hungry.  As long as he doesn’t start that again I’m cool with all his offspring.  Hey – just think of the dependents I’ll have to claim on next year’s taxes!!

But seriously, the dysmaturity that comes along with FASD is not always a problem.  Sometimes, like Little Man’s latest pretend play, it is a delightfully funny surprise.  Sometimes it is piercingly sweet, like the way he still loves to rock and sing and cuddle every night before bed.  It can make my heart almost stutter in my chest when I hear him give a rolling belly laugh of the kind kids seem to lose somewhere between toddlerhood and school age.  And it swamps me in a tidal wave of love when he melts into my arms, tears clinging to his lashes, comforted just because Mama kissed it better.

I saw a rainbow on the way home from work the other night and it immediately brought to mind that trite old phrase – you can’t have rainbows without the rain.  As much as I hate the sticky sentimentality of clichés, I have to admit there is some tiny grain of real truth stuck in all that syrup.  I may mourn what Little Man could have been without the prenatal alcohol exposure but I love who he is now and FASD is a part of him.  I would not wish the pain and problems he will experience from this disability on anyone but I wouldn't change him either.  I will just celebrate every sweet, wild, sensitive, restless, frustrating, amazing bit of him just like I drank in the shimmering beauty of those surprise colors. 

Parenting Kids with FASD is like

Adrienne at https://www.facebook.com/fasdfamilies asked for folks to fill in that phrase.  Wow what a question!!!  I have been trying to work on a post about what it is like to be a caregiver for a child with FASD and not gotten very far.  I am usually pretty articulate.  I'm the person in meetings at work that tosses off an idea or a line and has others saying "slow down I want to use that."  But not when talking about this.

I wonder sometimes why that is.  Is it the sheer exhaustion that ties my tongue in knots, or how fervently I care about it all, or some days I secretly wonder if FASD isn't contagious.  I know my though processing, my memory, my impulse control are all so much worse some days than others.   Taking a step back from trying to explain it all and just finish the sentence I came up with these:

Parenting Kids with FASD is like...

Swimming in a blender.

Riding a roller coaster that never ends.

Being the only sane person locked in an asylum with a lunatic in charge.

Jogging through knee deep peanut butter.

Rollerskating down (and back up) the hills of San Francisco during an ice storm.

Training cats.

Trying to learn how to land a plane before the fuel runs out, from someone who only speaks Mandarin with controls all labeled in Cyrillic. 

Living the very best and the very worst day of your life at exactly the same time – over and over again - every day.

I'm still not satisfied that I've nailed it but there you go - it gives you an idea.

Test Time, Part two

Continuing on with the on line course that SAMHSA (Substance Abuse and Mental Health Services Administration) offers here are a sample of questions from the next three units. 

Identify from the list below the signs and symptoms of an FASD in a child between 6 and 11 years old.  Select all that apply.

A.    Speech and language deficits, particularly with comprehension, social communication, and pragmatic aspects of speech

B.    Tendency to be led by others

C.    Problems with boundaries (e.g., inappropriate touching)

D.    Truancy

Identify from the list below three secondary disabilities among individuals with an FASD (age 12+).  Select all that apply.

A.    Memory problems

B.    Stealing

C.    Failure to understand ownership

D.    Lying

E.     Destructive behavior

 

You can learn more about FASD Signs and Symptoms here 

Identify which of the following are accepted prevention strategies.

A.    Universal prevention strategies are usually prevention messages in reading material or media that are aimed at reducing or stopping drinking during pregnancy.

B.    Selective prevention strategies include screening and motivational interviewing

C.    Indicated prevention strategies for women at risk include identification of risk factors, identification of FASD in women, intensive case management, “aftercare” programs, and programs that combine intervention and contraceptive use.

D.    All of the above

Identify the five P’s of prevention from the list below.

A.    Public education, programs and services, prenatal information, proven assessments, professional training

B.    Public policy, professional training, public education, programs and services, parent and citizen activism

C.    Public prevention, programs and services, public policy, police intervention, professional training

D.    Programs and services, parent and citizen activism, professional training, public education, psychiatric education

FASD Prevention is covered in this section.  And-

Identify three barriers to diagnosing fetal alcohol spectrum disorders from the list below

A.    Lack of a physical test

B.    Few practitioners qualified to diagnose

C.    Lack of sibling history

D.    Features related to an FASD are harder to recognize in adolescents and adults

E.    Unavailable paternal history

Identify an effective strategy for the home, school, and work environment in the treatment of FASD.

A.    Therapy and medication as needed

B.    Daily routines and structured activities with predictable choices

C.    Skills training

D.    All of the above

the last two questions come from the section I had been waiting for Diagnosis and Treatment of FASD. Except I was disappointed.  I didn't really learn anything there I didn't already know.  It is a good site for the very basics - but WHERE is the advanced material on this!!!  I keep thinking it must exist somewhere.  I never find it though.

 

 

 

Satisfaction

From reading just this blog you may have the impression that I like conflict.  I sure write about plenty of it with Little Man's school.  The truth is I really hate it.  I get a stomach ache even thinking about confrontations.  I just won’t let that make me back down.  I’ll white knuckle my way through it when I think it’s important.   Getting mad helps me sometimes (and sometimes hurts) but even when my temper cools, I slog through it with a kind of grim determination. 

Tonight was our PTO board meeting at Little Man's school and grim determination is how I’d describe myself headed into that. I spent at least half the day dreading it since I knew that the letters I sent had been delivered yesterday and I would have to sit across the table from the principal  who flat out lied to me and who I had publically called out on it.  I was a little curious how he would handle it but mostly I was determined to stare him down - stomach cramps and nausea be damned.  If I let him walk on me now this school system will walk on me and worse fail Little Man for the next 12 years. 

He did not raise the issue during the meeting.  This is good because I’d have handed him his head for discussing things related to my son specifically with people who have no business being involved.  After the meeting though he asked to speak with me a moment.  To my surprise I received personal apology AND the written one I had requested.  To my further amazement he admitted in both that he was “less than forthright”.  I didn’t expect he would ever say he lied.  (OK, technically he didn’t but there aren’t too many ways to interpret “less than forthright”).  I expected he would tell me that he had sent the memo but some secretary forgot to get it the teachers’ boxes and I misunderstood him.  Or some other shift the blame strategy.   It definitely was not what I expected.  So – is it enough?

Well, it doesn’t get someone on the staff trained but honestly I think that is more important at the middle school and high school levels than it is now.   My request that there be such a person and the fact that I offered to pay for the training which they declined is officially on record.  Those I think are important points for the future.  I also feel like I made an important point, not just to the principle but to the school board and special ed department, overall.  I won’t be walked on, brushed off,  or ignored.  I will call them on bullsh** when that is what they are shoveling.   

I know I’ve mentioned my tendency toward the cynical before so you know I’ve had my thoughts about how sincere his apology was and how much was a show.   However, even if it was for show, we’ve both learned from the fact that he felt compelled to put one on that I can make him “perform”.   I accepted his apology.   We’ll see how it goes from here.

Test Time, Part one

If you've found your way to this blog chances are pretty high you are already familiar with FASD in some way, but how much do you really know?  I found an on line course that SAMHSA (Substance Abuse and Mental Health Services Administration) offers complete with pre and post tests.  I'm going to reproduce some of the pretest questions from each section over the next couple of posts.

Identify when there was a known connection between alcohol use during pregnancy and subsequent fetal harm.

A.      Identified in a 1946 article in the Journal of the American Medical Association.

B.      Identified in a 1946 article in the Journal of the American Medical Association and in a 1968 study by Dr. Paul Lemoine.

C.      Identified in a 1973 study by Drs. David Smith and Kenneth Jones and the 1946 article in the Journal of the American Medical Association.

D.      Identified in a 1973 study by Drs. David Smith and Kenneth Jones, a 1968 study by Dr. Paul Lemoine, and a 1981 report by the Surgeon General

E.       All of the Above

Identify two studies that had a significant impact on the field of FASD. Select all that apply.

A.      A 1973 study in which Drs. Jones and Smith identified specific patterns of malformations, growth deficiencies, and central nervous system defects and coined the term “fetal alcohol syndrome”.

B.      A 1995 study on fetal alcohol syndrome and the neurobehavioral effects of prenatal alcohol exposure

C.      A 1996 study on secondary disabilities by Dr. Ann Streissguth funded by CDC

D.      A 2004 study on pregnancy and alcohol consumption

Want to try your knowledge against more questions like these two or just learn more?  Follow the link to the module about Historic Perspectives on Alcohol and Pregnancy.  I did not know all the background info they had here.  The most important point to me though, is how LONG we've known about this issue and how very little we have learned about how to help those effected.

I'll bet every parent or person caring for someone with FASD can answer these questinos from the next module:

Identify sign(s) of alcohol-related neurodevelopmental disorder.

A.    Sleep disturbances

B.     Attention deficits

C.     Sensitivity to noise

D.    Difficulties with attachments

E.     All of the above

Alcohol-related brain damage may be indicated by the following conditions or behaviors:

A.    Mental retardation

B.     Problems with cause and effect

C.     Poor impulse control

D.    Hyperactivity

E.     All of the above

But if you want to try your knowledge against more questions like these two or just learn more then follow the link to the module about Effects of Alcohol on the Fetus.

Organ systems are most vulnerable to damage by alcohol during the period of most dynamic development. Based on animal models, this most likely occurs during:

A.    Weeks 2-7

B.     Weeks 3-8

C.     Weeks 2-5

D.    Weeks 3-9

Identify the correct statement that lists risk factors for FASD.

A.    Maternal drinking patterns, fraternal drinking patterns, maternal lifestyle factors, such as nutrition and parity, and timing of alcohol consumption during pregnancy

B.     Maternal drinking patterns, genetic susceptibility, maternal lifestyle factors, such as nutrition and parity, fraternal drinking patterns, and timing of alcohol consumption during pregnancy

C.     Maternal drinking patterns, genetic susceptibility, maternal lifestyle factors, such as nutrition and parity, maternal absorption and metabolism of alcohol, and timing of alcohol consumption during pregnancy

D.    Maternal drinking patterns, maternal smoking, extended periods of sleeplessness during pregnancy, and maternal absorption and metabolism of alcohol Binge drinking (drinking 4 four or more drinks in 1 sitting) about 2 hours) has the same effect on the developing fetus as having 1 one drink per day for 4 days.

You can find more questions like these two or learn more in the module about Risk Factors for FASD. 

I'm not sure I learned anything in these first three modules that directly helps me help Little Man.  But I did pick up facts and stats that have helped when dealing with his school and knowing how to talk their  "lingo" has helped me with doctors that I need to interface with.  So it has helped me advocate for him more effectively and that makes it worth knowing for me.