The End of Eating : A Boy’s Journey in Congenital Muscular Dystrophy

Darling Boy has always loved to eat.  When he was just starting table food, my mom made some of her famous barley beef soup,  mmm,  delicious.   We put him on some telephone books and tied him onto the kitchen chair with her leopard print scarf.  (All Italian grandmothers must have one.)  He smacked his lips and ate that soup like a champ.

It’s always been like that with his eating.  Everyone involved with feeding him gets pleasure because he enjoys it so much.  The assistants at his school would fight to see who could feed him because he had so much fun when was eating. People often commented  about what a big appetite he had because he was quite a skinny kid.

The trouble with eating started when he stopped gaining weight and fell off his upward line on the growth chart.  Although he can’t walk, he moves constantly so getting calories into him is important.  D.B.  is like a kinetic wire sculpture, There’s always a part of his body that’s moving; fingers grab for tubing, his feet fidget, he squirms and jerks and only stops when he’s asleep.   He used to be able to crawl and he would pull to a stand right in front of the t.v.  and sway to whatever he was watching.  That boy burned all his calories and then some. He didn’t need his food blended or chopped and would spit out anything that was too big a bite.

Then he entered his current school and the staff evaluated him to see which class would be a good fit.   At that time,  they said that he needed a swallow study because he was at risk for aspiration, which happens when food and liquid goes into the trachea and lungs and not the stomach.   Dutifully,  we took him to get one and found out that he needed to have his drinks thickened and his food either chopped finely or blended.

This worked for about a year.  Our neurologist suggested a g-tube and with much trepidation, he got one placed in August of 2013.  He was still getting most of his meals by mouth and we were using the g-tube for supplemental feedings and giving meds. It was great because he gained 25 pounds in about 6 months and grew taller as well. Even better, his seizures were better controlled because he wasn’t spitting out his medicine.

As this past summer progressed,  we noticed that he needed all his foods blended and would cough after each meal.  When we took him for his neurology check up in August and told the doc about this latest development, he suggested another swallow study.

D.B. was so cooperative during this test.  He’s really growing up and not as scared as he used to be when at the hospital.  After drinking and eating some barium laced food, the test was done and we met with the speech therapist that ran the test.

We found out that he was silently aspirating any liquid, even thickened, that he was drinking.  This means that it would trickle into his lungs and he wouldn’t give any signs like coughing or tearing eyes.  And when he ate, it would pool in the sinus cavity and some would go in his lungs.  She recommended that we give him no more than 2 ounces of food at each meal and use the g-tube for all his nutrition.

I was ok with this.  As long as he could still get the taste of food in his mouth, I was  happy.  This guy loves so much of what I make,  meatballs and mashed potatoes, like the good Italian-Irish- American that he is.  Darling Boy was the only one in the house besides me who liked the pumpkin chili I make.

He had a shirt like this when he was in elementary school. D.B. always loved his pasta and his mashed potatoes.

The next day I got a call from the G.I.  office and I was told that after reviewing the swallow study,  the dr. felt it was no longer safe for him to eat anything by mouth.  They told me to keep him on the 3 cans per day and they would get me a follow up appointment with a nutritionist to see how much formula he needed.  I got the appointment for the next day and she figured out what he needed and what schedule to follow for his feedings.

These are the events as they happened.  The emotional reaction was devastating.  When I came home and told Darling Boy’s nurse, she said,  “but he loves to eat so much.” When you have a child that can do so little for themselves,  it’s a happiness to make them their favorite food.

I know this is the best way to keep him healthy.  The speech therapist explained that even if he wasn’t getting pneumonia from aspirating,  it was changing his lung function.  And we don’t want that in a kid with muscular dystrophy when we know that will eventually be a problem.

And that’s the other part that is so painful.  We are always waiting for the other shoe to drop.  When he got the g-tube,  I knew that down the road it would be his only means of getting nutrition.  I didn’t think it would be this soon.  The next step is having the breathing get compromised and of course that scares the bejeezus out of me.

It’s hard to watch your child’s physical abilities deteriorate.  At first it was his movement.  He never walked but he sat, rolled, crawled and even cruised on furniture.   He lost his pincer grasp as a toddler, now he doesn’t use his hands functionally. For a long time we had a plateau.  As a matter of fact, he wasn’t even looked at for a diagnosis  of muscular dystrophy until 2012.  Before that he was diagnosed with Cerebral Palsy.

He is growing and changing in many ways; definitely maturing physically and emotionally.  The boy has grown a little blonde mustache and unfortunately has developed acne. His ability to use assistive communication devices at school has improved greatly.  Just the other day,  I came home from  a dinner out with the girls and he said “home” as clear as a bell.

So we have the good parts: the funny sense of humor,  the big smile,  the small milestones.  And we have the miserable stuff.  But, being the funny guy that he is,  he lets me know that he doesn’t like the tube feedings.  At least once per week, he somehow manages to pull at his tubing and disconnect himself from the feed.  My silent ninja can use his hands when he wants to.

As I finish writing this, he’s getting his last feed in of the day.  He’s much better hydrated with the g-tube and staying healthy.  I will be thankful for that and deal with the other stuff when it happens.

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small world

across the world

take me

on silver clouds i float

adventure girl

crossing oceans

feeling at home in the sky

 

down

down

to

minutiae

small details of a life await me

i didn’t see this coming

i didn’t see the dragon unleashed

striking fire

causing tremors

 

across the room

take me

to  hands that quake in mine

no control

but wonder

no fear

 

into your eyes

take me

to the color of the ocean on a cloudy day

what lies behind them

 

the dragon waits inside your head

ready to shake your body

and roll those eyes around

the body goes limp

and we don’t know where you go

 

the world shrinks

to the minutes

how many go by before we

have to tame that dragon

or does he leave on his own

 

after

sleep steals upon you

and I lay down beside you

and breathe

feel your body

resting, quiet, no tremors

 

and the world

becomes the breath between us

Good Bye to Superstition

Yes, I wore one of these in high school. Mine was made from tiger’s eye.

I grew up in a household heavily influenced by Italian superstition; learning about the evil eye and how other’s envy could literally make you sick to your stomach.  My mom had lots of ways of keeping bad luck from the house.  On New Year’s Eve, we would bang pots and pans at midnight to keep  the evil spirits away for the year.  Then as good Catholics,  we had the tradition of putting a statue of the Virgin Mary in the window to keep the rain away for special events like the May Day parade and picnics.  And there were little things like don’t put your shoes on the table because it was bad luck.  Who would put shoes on the table anyway???

 

Then I married Lovely Husband who has generations of paranoid Italian superstitions to fall back on.  Sometimes he reminds me of the Nicholas Cage character in  Moonstruck.  If 2 bad things happen, he waits for another one because bad things always happen in threes.  He can’t sit in a restaurant with his back to the door because you always have to see who is coming in.  ( though I think this is more an urban Italian thing, like assuming you’re being photographed by the F.B.I. when you go to a funeral)  But I digress,  the point is I have been brought up in this culture and until recently it’s been in my head as well.

Italians are NEVER overly dramatic.

 

Recently, through working on mindfulness , I realized that I am giving up on superstition.  Being a parent to a sick child is a daunting process.  As soon as things are going well, some other shitty thing happens.  His seizures were pretty much controlled until he hit adolescence.  Then they worsened to 2 or 3 times a month.  He was at the emergency room for various reasons about every 2 months.  We also found out that he has a rare muscular dystrophy.  It’s no wonder I thought if I crossed my fingers,  jumped over a broom and did the cure for the overlooks; Darling Boy would stay fairly healthy.  When you have no control, it’s easy to believe in superstition.

I now realize that I have so little control that I best make the most of what’s going on NOW.  He’s doing well, you guys,  really really well.  When I told my sister-in-law, she said not to say anything because then he’ll get sick again.   See what I mean:  it’s everywhere. And that’s ok for them but for me I’m taking up celebrating the days that he’s well.  He hasn’t had a seizure in several months.  He’s growing like a weed.  He actually fits into a Small men’s t-shirt because his shoulders are that broad.  We are ordering a new wheelchair and the wheelchair dude says that his leg length is adult size.  He’ still a small guy for 15 but not as small as he used to be.  

 

And I know down the road this will not be.  It ‘s the nature of the disease that at some point he will have breathing issues, we just don’t know when.  There was no bad luck involved in his disease: just science.  Lovely Husband and  I both happen to have the autosomal recessive gene that causes his Congenital Muscular Dystrophy.  Although neither of us have family members who have been affected in our families’ memories, that gene defect has been passed down for generations.  He got his blue eyes because both his grandfathers have them and he is the outlier in our brown eyed family.  Unfortunately he got these very rare genes as well.

 

So for now,  I will be happy for another seizure free day.    

Lessons Learned, So Far

I’ve had a little revelation about what it’s like to be a special needs parents for almost 15 years.  Darling Boy spent time at a birthday party for one of his classmates.  I got to talk to some parents who are in the same situation.  It’s hard to get together because D.B.’s school draws from all over the city, surrounding suburbs and even surrounding states.  It was a great day of bowling and pizza and celebration. And I realized that these parents all had teenagers with special needs and we have learned so much from them.

Which brings me to the other revelation I had this weekend,   I have learned how to cope with this life and would like to share some of my insights for those of you out there with a child newly diagnosed with some vague description like developmental global delay.  When Darling Boy was first diagnosed he was 18 months and was given that vague diagnosis.  He also got  a medical diagnosis of encephalopathy which generally means your brain ain’t normal.

 I was an early intervention teacher who spent most of his first year testing him for things like object permanence.   That’s when you put a cookie or toy under a tissue and see if the infant pulls the tissue off because she remembers that it’s there.  It usually kicks in around 10 months and is the precursor to language because one must know that an object exists even if you can’t see it in order to be able to attach a meaningful sound to it. He actually made most of his first year milestones  on time except that he never made consonant sounds.  But he rolled over and sat up and crawled and cruised furniture.  He even touched (never pointed) to a picture of a cat when asked.  But he never walked on his own,  so he started early intervention services at home for everything:speech, occupational therapy, and education.  I was pregnant with twins, working full time, living in a 2 bedroom apartment and having people coming to my house all the time.

I learned that my house didn’t have to be perfect.  That my in-laws loved coming over and helping out when we were both at work.   The biggest thing I learned during this time made me a better special education teacher.  I found out that all the activities and exercises that the therapists left me were too much.   I did what I could and remember I had just finished doing early intervention for a living.  Who better to implement this stuff?  yeah, that didn’t happen because I was too busy being pregnant with twins and then having 3 kids 22 months apart.

So, if your child is newly diagnosed, do what you can about what the therapists tell you but remember that you can’t do it all.   There will be breakthroughs, especially in communication, so keep at it.  But don’t feel guilty if you can’t do everything that therapists tell you to do.

I remember during the early years of his diagnosis googling his symptoms: microcephaly, , low tone and developmental delay.  None of the outcomes were good but I kept thinking he would walk and talk.  I had great hope.  And this is something that’s important to hold on to because coming to terms with a diagnosis is a gradual process.  There’s no one moment that you say,  Oh, this is what it is and I accept it.  When Darling Boy turned 7, I finally admitted to myself that he wasn’t going to walk, talk and was intellectually disabled.  I drank for a week and I am not a drinker.  My husband told me that he would give me a week and so I took that week and drowned my sorrows.  I’m not advising this as a coping strategy but it did work for me.  It was the beginning of me accepting that this was permanent and feeling really horrible about it.

Please be kind to yourself.  It can be so hard when you can’t sleep at night because you’re worried about your child’s future.  Darling Boy will never be independent or hold even a job with supports.  I’ve decided that his job will be to provide jobs for other people and I’m happy about that.  I work in the special needs field and I love my job.  Now D.B. can provide meaningful work to other people.

A side effect to having a child with special needs is that it makes your life simple.  Despite all the complications that arise,  you will find meaning in simple joys.  I appreciate all of my other children’s developmental milestones.  It was an eye opener when I took one of the twins to the E.R. last year because she needed fluids.  She hopped up on the bed,  I  talked her through the stick and we watched a Project Runway marathon.  I wouldn’t call it a fun outing but it was so easy compared to D.B.’s little excursions.

After over a decade of being a mom with a special needs child,  I’ve learned some neat things.  I am not broken.   I feel that way sometimes and I felt that way a lot when everything was new.  My dreams for Harvard (never really likely) died.His dad’s dreams for playing football and soccer with him died.  But they are feelings and they pass.  I am not broken and neither is he.  Now that I have an actual diagnosis,  it helps me to be prepared for what will come next.  His muscles will deteriorate but his mind keeps moving on.

If you have a child who doesn’t talk,  keep talking to them and exposing them to everything.  I assume that Darling Boy understands more than he can say.  We’ve started reading him Harry Potter books and he really enjoys them.  We watch reruns of Castle when he gets home from school as well as  music videos and even TED talks. Just the other day on the way to the birthday party I wanted to stop at the post office.  As soon as I pulled up near it and said that I was stopping, he pitched a fit.  This from a teenager who loves to take car rides.  I changed my mind and that little bugger was fine for the rest of the car trip.  I think he wanted to get to the party, don’t you?

I hope that I can be helpful to those who are just starting this kind of parenting.  It doesn’t necessarily get better but it does become normal.  I never thought that I would be able to deal with seizures and g-tubes but here I am.  I’m often sad and overwhelmed by this experience but that’s because it is difficult.  There’s no other way of saying it.  But I do love him so and he loves me so unconditionally.  And with teenage twin girls in the house,  that is a blessing!

Stress Free Holidays?

I always have great plans for how I’m going to dress Darling Boy for Halloween.  This year I was thinking about it over the summer and decided to have him dress as  Doctor Who and we could make his wheelchair into a T.A.R.D.I.S.  I enlisted my crafty friends to help me execute this and Stark Raving Mad Mommy found this adorable  wheelchair T.A.R.D.I.S.   It’s just what I wanted.

so adorable, he ‘s dressed as the 11th Doctor.

But that was August.   When October rolled around I thought about it and no other action occurred.    Of course, I felt guilty about it.  Guilt is a given for someone with Irish/Italian ancestry with some long years of Catholic education thrown in.  (16 years, people, I even went to a Christian Brothers college.)

For the past several years, due to the magic of the internet, I’ve seen more and more cute ideas of how to incorporate a wheelchair into the costume.  I am including some pictures that I got from the 3E movement.  I love all of them and admire how these parents are advocating for their kids to be included.  But really I am lucky I can wield a glue gun without burning myself.

Of course, this gets me into the whole train of thought that I should be able to do this.  Despite the fact that I generally suck at constructing anything.  For instance, The oldest daughter put together D.B.’s stroller out of the box without reading the instructions and she was only 14 at the time.  She has that kind of brain.  The same task would have taken me several hours and I would have at least one extra part that I didn’t know where to put.  To add to that, I just don’t have  the energy to transform his wheelchair into a blue police box. This is when I wish I taught at Hogwarts and could just magic it up.  Besides,training in nurses and doing my normal every day stuff like working and keeping up the house, dr. appointments,  and ferrying  kids to sporting events seemed to fill the day.

The 9th Doctor, played by Christopher Eccleston

I came across this blog post, Lowering the Bar and I started to  feel better about my lack of effort.  Really, we have the whole costume thing planned out.  He ‘s going as the 9^th Doctor.  There are 11 of them, people, and the 9^th  is the easiest.  I bought him a black v neck t-shirt and he’s going to wear his dad’s leather jacket.  I’m putting this quote on his communication device:

“I’m the Doctor.  I’m a Time Lord. I’m from the planet Gallifrey in the constellation of Kasterbous.  I’m 903 years old and I’m the man who is going to save your lives and all 6 billion people on the planet below.  You got a problem with that?”

Voila: DoctorWho.

Life is much easier for me when I lower my expectations.  I remember how we would recycle Halloween costumes that we got from the five and dime store.  It was so exciting to go up in the attic and get the costumes down to see what fit.  Then we started making our own costumes as we got older.     I remember that every Halloween we would go to a neighbor’s house after trick or treating and have cupcakes.  They had 5 boys and the dad always came up with some creative costume like being a table with fruit on it or a comfy chair.  We loved it but we never expected it from our parents.  He was the exception when I was growing up.  Now we hype up every damn holiday to the point that people get stressed over it.  I am going into this holiday season with a new calmness.  I will get done what needs to be done so that we can enjoy each other.  As the kids get older, we try to cut down on presents and do things that require presence.  This may involve going to the movies or seeing a play.  The Oldest Daughter and I want to create memories for our kids of doing things together.

What are your thoughts on the upcoming holiday season?  Do you think we make things more difficult by having such high expectations for ourselves?

10 Things You May Not Know About Me (response to John Scalzi)

1. I ran over my daughter’s foot when she was 6.  Only bruised it!

2.  Worked for unionizing Child Care Workers.

3.  Married to a former Professional Wrestling (ok, only local )

4.  Learned Applied Behavioral Analysis from someone who learned it from Lovass.   (big deal in the ABA community, but not anywhere else.)

5. Am only 1 degree separated from Kevin Bacon.  My sister went to PA Governor’s School of the Arts with him back in the day.

6.  Chased muggers and almost caught them.

7.  Sang ” We are Family” on stage with Kim Sledge.

8.  Had a poem published when I was in high school.

9.   Got sent to the hospital with a bone bruise when a student threw a chair and it hit me. (working emotional support, need I say more?)

10.  Rode on the top of the bus when I was sightseeing in the Cordillera Mountains when I was a Peace Corps volunteer in the Philippines.

 

Doublethink or Just a Normal Day at the Department of Education

This is how I picture Department of Education policy wonks.

I have a life outside of taking care of Darling Boy.  And in my working life,  I get to sit in my office and attend webinars.  The definition of a webinar is: a  good day to clean out your desk drawers. Catch up on e-mails.  Oh, and listen to some policy wonk in the State Department of Education tell us about accommodations allowable for high stakes standardized testing.  At first, I was just listening for what I needed to learn about English Language Learner students.  Not my area of expertise, as we say in the education biz.   Wasn’t even thinking about how stupid the testing is because I have been brainwashed was just doing my job.

Someone asked a question about settings and students with test anxiety.  I’m not sure, refer back to the not really listening part.  Then I heard something like this come out of the presenter’s mouth: “ The adults can really stress the students out about the test.  You must be careful not to do that. I know that’s hard because now you’re evaluations are based on them.”

WHAT???  COULD. YOU. PLEASE. REPEAT. THAT?

I have come to the conclusion that all education policy makers are practiced in the art of doublethink.  It’s a term from Orwell’s book, 1984.    It means that someone can hold 2 opposing thoughts at the same time without any discomfort.  Kind of like this:

Dept. of Ed: 1) Don’t stress the students out about high stakes testing.

                    2) Your evaluations are based on high stakes testing.

Dept of Ed.  1) We know from research that standardized testing isn’t reliable.

                    2) We are basing your evaluations on unreliable information.

Dept. of Ed.   1) Don’t teach to the test.

                      2)  Here’s some professional development on how to teach kids to                                 analyze test questions so they can get more right answers.

And my favorite:

Dept. of Ed: 1) We will have 100% of American students reading at their grade level.

Dept. of Ed:  2) Here’s a standardized test for students who can’t read.

So, next time you think that politicians can talk themselves around anything, just sit through some professional development from any Department of Education.

Seizures Suck

Seizures: a lightning storm in the brain

This will just be a quick little post.  On Thursday, Darling Boy had a seizure.  While this is nothing new, he hasn’t had one in 6 weeks.  That’s the longest he’s gone without a seizure since he hit puberty.  So,  I was coasting along thinking, “Maybe he’s getting all his meds in because of the g-tube and the seizures will be controlled.” Like, as if I could even think that for a little moment because “bwaa ha ha ha!!”, said the neurons.  “Let’s have a lightning storm.”

Oldest Daughter had just walked in to pick up BamBam.  We were talking and I was finishing up feeding Darling Boy.  He fell over, which happens because he loses his balance.  Then, his head started convulsing.  This is new, I thought.  So I cupped my hands under his head and told Oldest Twin to start timing.  It felt like forever, watching his head shake and it looked like he was gasping for breath.  He didn’t turn blue though.  Then it stopped, just like that.  Sudden start, sudden stop.  It was only a minute and a half.

I am grateful that it happened while BamBam’s mom was here.  He wasn’t even aware that anything bad had happened.  The twins have seen these so many times that they know the protocol; start timing when mom asks.  But they don’t really watch them and if Dad is home, they just run upstairs.  I think that ‘s a pretty good strategy for them.

He didn’t fall asleep right after but did sleep in the next day.  He’s been pretty cranky since then.  But that could just  be constipation :). Let’s hope it’s another 6 weeks before we see another!

 Photo credit:

http://wsusna.files.wordpress.com/2012/02/1109valashiya-epilepsy1.jpg

I Got Skillz

Could this be me?

In my younger days, I remember loving the Cherry Ames book series.  She was this very cool nurse who also solved mysteries.  Sweet, a detective and a nurse!  To this day, a good mystery will hold my attention, but medical stuff doesn’t.   Sitting at a lunch table full of nurses talking about how good it is to feel the vein and finally get the needle in there made me a little sick to my stomach.  So who in a million years would ever think that I would be so proud of my new nursing skills……certainly not me or anyone who knew me in high school or college.

 

But life throws things at you and you deal, right?  When my brother was on hospice care for A.I.D.S. at our house, my mom and I divided up the nursing duties.  She cooked him delicious meals that he would eat when nothing else tempted his appetite.  I was in charge of dispensing meds.  It was pretty easy, I just had to count them out and make sure he  took the right ones at the right time. And then I would hook him up to his port and give him his heavy duty antibiotics for the M.R.S.A. he had contracted post appendectomy surgery.  He was such an easy patient, always so nice, even when he was in pain.  So, I had a little home nursing skill before Darling Boy came to town.

 

And now I can do all these things with a g-tube.  Today I cleaned a clog with some soda because my nurse friends told me that was a cheat that they used in the hospital.  Thanks, ladies!!  And I can give him feeds with the pump or the syringe.  

 

The only thing I was really freaking out about was what would happen if the tube got pulled on.  Darling Boy loves to pull on things: strings on his sweatpants, his shirt or pants, and you guessed it, the tube that now hangs out of his stomach.  Actually, he pulled it enough that he dislodged the bar that is flush to his stomach to the point that the doctor had to fix it.   I learned how to unsnap the doohickey and place it flush against his stomach if it happened again.

 

And it did. ON.THE. RIDE.HOME.FROM.THE. HOSPITAL!  D.B. is like a ninja that way, whatever you don’t want him to pull on or knock over, that he will. He is very quick and very strong.  Just because he doesn’t walk, doesn’t mean he doesn’t move.  And the boy has some skills.  Especially the skill of pulling on things on or near his body.  

 

So, I get home that night and felt too tired and edgy to deal with it.  So was D.B., neither of us really slept after 4 hours of doctors’ appointments ending in an x-ray. The next day,  I attempted to disconnect the doohickey  and slide the tube back into his stomach.  Yeah, in a couple hours it was out again.  That night, as I was tossing and turning ( did I mention my anxiety?)  I figured I would call the hospital and see what they had to say.  Either I would have to go to the e.r. (it was the weekend) or I would go in for a visit on Monday.

 

The g.i. doctor called me back and explained in very specific detail how to feel the tube tug inside his stomach and then inch the doohickey down to his tummy, not to pull the tube as I had been doing.  We agreed that if I wasn’t able to do this, I could get an appointment on Monday.  Now, to be fair, the doctor who showed me how to do this had no time to explain because Darling Boy was thrashing around the table and screaming loudly while he was showing me how to do this wondrous thing.  Well, Lovely Husband came back from errands and I tried to fix the doohickey just as the weekend doctor explained.  I felt the little tug and I slowly moved the white piece back towards his belly. Voila,  everything was back in place.

 

So, if anyone could find a mystery for me to solve,  maybe I could change my name to Cherry Ames.  Ack, no,  I still can’t handle the blood and veins thing.  

 

Batshit Crazy with a Side of Venom

To the Lady Who Wrote This Hateful Letter,

I think you may be a seriously deranged person.  Please hie thee to a psych ward. Your description of a normal residential neighborhood makes me cringe.  You can abide the sound of barking dogs but not a non-verbal kid’s sounds?    Did you ever think they may be sounds of joy?  I saw a clip of the kid on a news video.  He was happily flapping away and jumping up and down.  He has no idea that there is so much hate in the world. He may know when people don’t like him.  He knows what makes him happy but trust me, he isn’t trying to scare your kids.  This is your opportunity as a parent to educate them to be tolerant of difference.  But I guess you missed out on that parenting strategy.

 

This kid and the kids like him don’t scream to annoy you.  They scream to communicate.  Trust me, my non-verbal son has several high pitched screams.  One usually means he’s in pain, the other means he wants us to change the tv channel.  And there are times when he’s been screaming for hours and I  just want him to shut the “f” up.  I understand that it can be annoying but here’s the thing: he’s a human being.  I know you’re one too but you are a sad representation of what is “normal”.  I’d rather hang out with my son or that kid who annoys you so much.

And just what do you mean when you say that “you should take his non-retarded body parts and donate them to science.”  Are you a reincarnation of a Nazi? You are talking about someone’s child.  You also talked about him never getting a job or being loved by a girl.  All I can think, is What the What?  Life is so much more than the little box that you live in.  My son will never be married or hold a job but he will provide other people with jobs as they care for him.  And many people love those with special needs. Before my son was born, I was a special education teacher and loved all my guys, even the ones who screamed.  

 

I hope  the police do find you and your neighbors know just what kind of human being you are.  But if they don’t,  at least you’ll know that your ignorant attitudes are no longer accepted in our world.