Stuck

It's been about 10 years now since the two halves of Levity and Perspective joined forces
and I thought it would be fun to share what I consider an important moment in our relationship.
Before I shed some light on this particular moment, a little background information.

One of the fun things about having a kid with Down Syndrome is that the diagnosis comes
with a host of other medical issues. One complication that Maggie had dealt with was frequent
choking. Due to this, my wife, myself, and Maggie's older sister have gained more than a
passing familiarity with the Heimlich maneuver. After several doctor appointments, 911 calls,
and more than a few PTSD inducing choking events, it was decided that in order to counter this
issue Maggie would need vascular ring surgery to reroute her esophagus.


Maggie had already had several hospitalizations due to chronic aspiration pneumonia, a mitral valve repair, an AV canal repair as well as a diaphragmatic hernia. When I say several hospitalizations I don't mean like a couple of dozen. For the first few years of her life she was in the hospital nearly as often as not. I learned all of this second hand as I was not yet in the picture. This surgery would be my first venture in to the wonderful realm of inpatient care.

At this point we had been together for several months and were in love. It was wonderful, but I had been in love before. I did not know yet that this was going to be the big one. I remember the moment that I came to this realization.

Maggie was having her central line dressing changed. This was located in her neck and as far as I understand, was a line that fed directly into her aorta. Probably a fairly routine procedure when done on a willing patient. Due to Maggie's inability to understand what was going on, she would not be a willing participant. Imagine trying to thread a needle, but you are performing said needle threading on horseback at a gallop, also if you miss the eye of the needle your needle can bleed to death. Nurses really are amazing.

I myself had no idea what was about to unfold but began to gain the smallest bit of understanding as my wife prepped the nurses. I remember the phrases, "Don't underestimate her strength" and "we'll need more people" being repeated several times. Part of me thought that five adults to restrain a 9 year old child seemed excessive. But the confidence with which the woman that would eventually become my bride spoke caused me to believe that we may be short handed.

Don't worry she made it. We had her raking leaves within the hour.

What transpired next would forever redefine the words love, trust, and strength to me.

As the nurses held Maggie down and performed their duties, my better half held our daughter's face and reassured her. Maggie did not understand the procedure but she knew that it hurt and she was afraid. She fought with every ounce her little body could muster. The nurses were nearly outmatched. They performed admirably.

I have never felt more useless. As the nurses and Maggie and a woman that I'd only known for a few month's struggled, a shameful thought occurred to me.

I could just leave.

Everyone was distracted and I could be halfway to the parking lot before anyone even noticed I was gone. This was too much, WAY too much for me too deal with. I wasn’t ready for this.
Up to this point in my life I'd never dealt with anything this scary or intense. I'd had relationships aplenty, but I'd also done a pretty solid job of avoiding anything that smacked of any REAL responsibility or sacrifice. This blatant display of love, bravery, trust, and raw emotion was a lot to process.

She told Maggie it was all going to be OK. She told Maggie that it was almost over. She told Maggie that she was safe. She told Maggie that she knew that it hurt and she was sorry.
Maggie believed her, Maggie trusted her. This was a situation that the woman that I was in love with had been in several times and she kept doing it; she did it over and over and over again. She would face this every day for the rest of her life if necessary. I had never seen such strength. I never would again.

All thoughts of flight disappeared. Cowardice was replaced with a steely determination to stay as close as possible this woman for the rest of my life. I was stuck. Not stuck in a bad way; like in a cage with 5 rabid koalas. Stuck in a good way, like on a couch with 3 happy sloths and a new season of (whatever you're into).

On my best days I feel like I stand in the shadow of her courage. I'll never not be impressed with her. She is the most amazing person that I’ve ever known and in knowing her, I am becoming a better me. I’m not proud of the me that she initially fell in love with nigh a decade ago. The me that saw a scared Maggie and wanted to flee; but I’m getting pretty happy with the dude that has been created, in no small part, by her love.

She is way out of my league, I hope she never figures that out.

Cheers

L&P

Tips and Tricks

So as you, the frequent reader knows, we have five children, a 17 year old, a 15 year old that has Down syndrome with a smattering of autism, a four year old who identifies as a three year old, and twin two year olds. One of the most frequent questions that we get is, "How do you manage?"

Well being that we do this blog not only to share our story but also to help out fellow parents, I thought it would be sporting to answer this question with our organization tips that we use to help keep our sanity.

So here it goes.

1. Put all of the kids' diapers on at once: Changing a diaper takes about 3 minutes. Since the boys have twin power, they have synchronized their bowel movements, every time there is a diaper change, there are two diaper changes. That means roughly 6 minutes for every poo. The way that we shave time off of this chore is to put 7 or 8 diapers on the kid first thing in the morning. Sure the clothes are a bit snug but the time you save just stripping off only the outer most diaper is invaluable.
2. Always wear a hockey mask. Kids can be messy; we have a hard enough time trying to keep them clean. A hockey mask not only keeps the kids messes off of me, but it is surprisingly comfortable. Also kids LOVE masks!
3. Cry Driving: When you have three toddlers begging for your attention at all times, the tension mounts. Being overwhelmed isn't an occasional occurrence; it's a way of life! I've found that the best way to release some of that pressure is when behind the wheel. Not only does this assist in getting out of tickets (no officer with a heart can ticket a sobbing 37 year old man) but it models good driving habits for our 17 year old. Namely, being able to multitask when driving.
4. If you have a child with special needs then you know the frustration of trying to get the school district to follow through with your kids IEP (Individual Education Plan). Save time and frustration by assuming everyone involved in your child's education is stupid. During the IEP meeting speak slowly and clearly. Bring shiny objects to keep thier attention and a punching bag to release the rage in a safe place. (Side note, this does not apply to Maggie's grade school teacher, that woman is a mother f'n saint!)
5. Remember not to neglect the emotional needs of your spouse. Make eye contact at least three times a day.
6. Showering can take up to 20 minutes and is only considered a necessary daily activity in some westernized countries. Aquaman never showers and he is the King of Atlantis. If not showering daily is good enough for royalty, then maybe it's good enough for you too. Think about it.
7. Sleep is a necessary evil, but the bible says that we should work against evil. Utilize the knowledge that god gave you and fight that drowsy eyed demon with the chemistry of amphetamines.
8. Maintaining the safety and security of your home is your responsibility as the adult in the home. Purchase a hand gun and fire it into the air outside your home at random times throughout the day and night. Soon your reputation will grow and no one will dare come within spitting distance of your abode.
9. A pet is a great way to teach your child responsibility. But if your child neglects the dog or cat then guess who’s on the hook for animal neglect? Not your toddler that's for sure! Cut out the middle man and just leave an animal carcass someplace in your house.
10. Take time for yourself. Of course, no one in your house will let you do this, because they are all selfish a-holes that have no respect for your time, personal space, or all the hard work you put into maintaining the home. So just cross your fingers and hope that you don't lose your damn mind before they are all in school and it buys you three f'n seconds of peace and quiet.

Cheers

L&P

p.s. this is satire, we love our kids, please don't report us.

R Word Part Deux

      A while back I posted this blog including some arguments and counter arguments regarding use of the R word. Something that I did not cover well in this entry was why the R word should not be used. While this might be obvious to some, others may require a bit of explanation. Being that we are advocates for special needs education, it makes sense that we should also be advocates for educating others about those with special needs.

      I suppose I can start by telling you that what inspired this post was an exchange with an old friend who had used the R word in a face book post. I feel compelled to point out to anyone that I feel is smart enough to discuss the topic without feeling attacked that using the R word is thoughtless and rude. I have found that I get better success when these discussions are private and I do my best to make sure the other party does not feel attacked or shamed.

     The discussion I had with this particular friend was a perfect example of how it should go. The following is a quick summation of how the discussion went.

Me: Hey dude, that hurts my feelings.

Friend: I’m sorry, I wasn't trying to be a dick.

Me: I know you’re not a dick you are awesome.

Friend: No YOU are awesome.

Me: No you are awesome, also handsome.

Friend: You too!

Hugs.

So without further adieu,

1. It is Rude: If I was to meet a person named Richard and I immediately began to refer to him as Dick I would be considered rude. If said Richard was polite and patient and said something along the lines of, “I prefer Rich or Richard” but then I continued to call him Dick, then which of us would be the dick? I think you know the answer….Its me, just in case you didn't know the answer. In case you had not received the memo, no one wants to be called the R word. The R word is hate speech.
2. It makes you look like an asshole: Like I just stated using the R word is hate speech. If you would be comfortable substituting any other word you know to be hate speech for the R word and would not bat an eye. Then congratulations, you, sir or madam, are an asshole. However, if you would be comfortable using the R word, but hesitate at use of another word that is considered hate speech, maybe one that starts with the letter N, then maybe you are just a hypocrite and a coward.. This brings me to my next point.
3. If you use the R word then you are bully: Sarah Silverman, made an excellent point (not about the R word but about something else), when discussing the use of hate speech. Some hate speech is considered a bit naughty, but it is socially acceptable. While other hate speech makes you a social pariah. For example; racial slurs about Asians are acceptable on prime time television, while hate speech about African Americans is a big no no. The point that Ms. Silverman makes is that the reason for this is that no one is afraid of Asians so it is ok to make fun of them. Whether she means physically afraid, or financially afraid (think bus boycott) I do not know. The same reasoning applies to use of the R word. If someone lets loose with one slur but hesitates at other slurs, then we can pretty easily draw the conclusion that it is because they either do not fear or do not respect one of those groups. What makes this person a bully is that they are essentially beating up the group that can defend itself the least. Speaking of respect…
4. You are also disrespecting the advocates: Every aspect of our lives is affected by the fact that we have a child with special needs. I mean EVERY. I will not list these off as I feel that would become tedious and I have a hard enough time staying on task. I may go into this in greater detail at a later date, but for now I’m going to just ask that you trust me when I say that we do not even get a break when we are asleep. We work hard to try to ensure that Maggie has the best quality of life possible. We take a lot of pride in this while at the same time always feel as though we could be doing more. When someone uses the R word, they are not only disrespecting our child, but also us because they are being dismissive of our child who also deserves respect. 
5. You are on the losing side of history: Much can be told about a culture by it’s language. When I was a kid I was told that Eskimos had 100 different words for snow. I did not realize until I was older that this was not a reflection of how boring it must be to talk to an Eskimo, but of how big a role snow played to the lives of Eskimos. The huge number of words for snow reflected the many different kinds of snow and subtle differences which would most likely be lost to me. Also, I’m pretty sure that the number 100 is wrong but I don’t feel like looking it up. The reason I bring this up is because our language is a snapshot of who, when, and where we are. If I was to talk to an elderly person from the south and they dropped the N word but did not seem to do so in a hateful fashion, I would probably just assume that the reason that they thought this was an acceptable thing to do was because, it is a reflection of their era. While this person’s grandchildren would be horrified (I hope), at the cavalier use of such a hateful word, it would be a peek into a time when it was not considered a hateful word at all. I am not psychic but when considering current trends towards tolerance and cultural sensitivity, I think it is safe to assume that the R word is going the way of the Dodo. So please, if you do not want to embarrass your grandchildren, be a bully, be an asshole, or just be disrespectful to yours truly, start to make correction action to your language now.

I realize that this entry may not effect any change whatsoever.  Some who read this may consider me overly 

sensitive.  We are Maggie's parents and it is our responsibility to advocate for her at every turn. If you still 

feel the need to use this word I will encourage you to remember what Jesus said.

"Don't be a dick."

Jesus is a guy I worked at a restaurant with.

L&P 

Adventures in Maggie Rearing Vol. 2

The best thing about being a part of Maggie's life is that it is never, EVER, boring.  Being Maggie's parent forces one to develop a 6th or maybe even 7th sense. Prior being her parent I was a deep sleeper.  Now I wake up when the refrigerator is opened on the other side of the house. This is due to the PTSD that I now have from cleaning up the messes that Maggie makes when she "cooks". When Maggie is getting into her shenanigans the hair on the back of my neck begins to stand up.  The following are examples of instances in which I ignored that feeling.

Exhibit A

  The above photo is taken from the second story of our home.  Due to the fact that Maggie is largely non-verbal we are typically forced to guess at her intentions.  This picture was taken shortly after we purchased the movie Tangled.  Our working hypothesis is that Maggie was recreating some of the scenes in which the main character jumps out of the window.  Barbie's taking flight is not a new occurrence though, prior to moving to this address they would frequently find themselves pitched into our neighbors yard.  Our neighbor at the time had a good heart and would simply toss them back.  He once stated that he believed they were "camping".

Exhibit B

Maggie loves the water.  Swimming is her favorite activity.   Even if the water isn't deep enough, she is content to sit in a wading pool for hours on end.  When the weather turned too cold for her to enjoy this activity outside, Maggie thought outside the box. I believe we were napping when she first dragged this pool in from the yard because if memory serves what woke us up was the frequent trips up and down the stairs as she filled a 16 ounce glass up in the bathroom sink over and over, then trotted it downstairs and tossed the contents into the pool.  Had I been a deeper sleeper, she may have eventually succeeded.

Exhibit C

This picture was taken shortly after we brought Maggie's little sister Merritt home from the hospital for the first time.  Maggie must have been sick of the late night cry fests and lack of attention.  She packed what she needed for a life on the road, (a suite case filled with Barbies) and headed out.  Luckily she did not get far before my wife convinced her to head back home.

Lately, Maggie's sleeping meds have been failing us and she has been waking up pretty regularly at 1:30 in the a.m.. She almost always stays in her room playing so it has not been much of a disturbance.  The biggest issue is that part of her play includes random screams, singing, and banging on the wall.   Most parents would be concerned about the screaming, but when I check on her I am greeted with an insistent finger pointing for me to leave and either the word "GO" or simply her blowing raspberries at me.

The Costuming is VERY important

It would seem that when I enter her room I am interrupting the delicate role play that she has created and am breaking her concentration.  She may only be saying "go" but the way she says it make it feel more like she is saying, "Do you have any IDEA how hard I have been working on this scene?!"

She has done a better job than we expected of adjusting to the twins joining our family.  We have had a few requests for picture featuring her and the twins.  She may have accepted that they are now in the house, but she still is not crazy enough about the idea that she is willing to sit for a photo.

More Adventures in Maggie Rearing in the future.

L&P

Not the Worst Thing I Have Done, But Close

I must admit that I have not always been the beacon of special needs advocacy that you now know and love.  True I have always had a soft spot for those with special needs.  I have also always respected those that struggle alongside the special needs population so it should come as no surprise that I fell in love with my wife and shortly there after with fatherhood and parenting a child with special needs.

But as I previously mentioned, these skills needed to be honed.  In my defense, my heart was in the right place, even if my head was lodged squarely in my ass.

Enter Prince.

Not that one

I have roughly 15 years of food service experience.  In that time I can tell you that there are several types of individuals that seem to gravitate to different fields of the food service industry.  Those that are very personable and organized, (and occasionally gay) seem to become servers.  Individuals that have criminal records tend to work in the kitchen.  Psychopaths tend toward management.  Prince was a dishwasher.

Dishwashers are usually one or several of the following; alcoholic, special needs, teenagers, migrant workers.

Prince is an African American gentleman from Louisiana.  He has a thick accent, a fairly oddly shaped head, and worked as a dishwasher.  Prince and his brother Kenny both worked with me at a restaurant which will remain unnamed.  For months I worked with Prince but had minimal interaction with him as I was a server and we usually worked different shifts.  When I did talk to Prince he would talk about going to school.  I assumed this was a special needs school where he would work on life skills.

One day Prince came to work directly from school. Prince was wearing hospital scrubs.  It slowly began to dawn on me that if an individual with special needs works in a hospital it is not usually a position in which scrubs are necessary.  A terrible terrible feeling began to creep over me as I turned to Prince's brother (who did not have a criminal history to my knowledge) and asked, "Kenny, does your brother have a learning disability or something?" (Kenny's accent was also not nearly as thick as his brothers.)
"No? Why?"
"No reason."
I had assumed that due to Prince's oddly shaped noggin, slow manner of speech, and employment as a dishwasher, he was an individual with special needs. The following is a list of things that I ACTUALLY SAID to Prince.
"Great job busing that table buddy!"
"You mopped that floor all by yourself!"
"Wow! You carried 1,2,3,4 glasses and didn't spill a drop!"

 The horror of my situation must have been evident on my face as I uttered the words, "My god I gave him all those hugs."

Kenny (again, who does not have a criminal record) must have pieced together what I was going through and laughed the laugh that only a black guy can laugh at a white guys discomfort as I sputtered my poorly thought out reasoning for believing his brother had special needs.  Even more terrifying was the thought that Prince may have believed that I spoke to him in the manner that I did because I was racist and placating him.

Now if you can tell me how to explain to someone that you spoke to them as if they were a child, not because you are a racist, but because you thought that they were an individual with special needs, then I sir or madam will eat my hat.  Because that is a situation that is fucking impossible to navigate gracefully.

Thankfully shortly after this Prince moved on to another place of employment.  Probably one with less racist white people that treated him like a simpleton.  I don't know if Kenny (again, not a convicted felon), ever explained to his brother that I was not intentionally being an a-hole.  But that I was only accidentally being an a-hole.

The moral of the story dear reader is this; much in the way that you should never assume a woman that looks pregnant is pregnant, never assume a person has special needs until they tell you specifically that they have special needs.  Unless they are blind of course in which case you probably should err on the side of blind and not toss them anything.

In conclusion I would like to apologize to black people, those with special needs, my family, and anyone I may have inappropriately hugged.

L&P

Adventures in Maggie Reering Volume 1

Throughout my tenure as a parent to a special needs child I have learned many valuable lessons.  One of these lessons can best be summed up in a quote by Albert Einstein. I include his first name to ensure that you do not confuse this Einstein with the purveyors of my favorite coffee and bagels at Einstein Bagels.  By the way Einstein Bagels, endorsement deals are available for your fine products.

Anyways, Albert Einstein once said, "Only two things are infinite, the Universe and human stupidity, and I'm not sure about the former."

This was brought into glaring clarity several months back when talking to a co-worker.  We had some down time and conversation turned toward our children and eventually, as any proud father would do, I began to show off pictures of my kids. When I got to pictures of Maggie the co-worker turned to me with a concerned look on her face and asked, "Whats wrong with her?"  Being the eternal optimist that I am I assumed that something was smeared on the picture so I looked at the picture, finding nothing wrong with it I asked her to clarify.  At this co-worker made a gesture to her face and stated, "Her eyes."

"Oh, she has Down syndrome." I responded, not really thinking much of it.
I should point out that this co-worker is of Asian decent so the next part I was going to chalk up to her unfamiliarity with the Kings English.  After all, what other reason could there be for her then saying, "Oh that's bad."

Again, being the eternal optimist I was going to let her clarify since, at least at this point.  She couldn't possibly mean what it sounded like she meant. She continued, "My sister found out that she was going to have one of those and she told that doctor to take it out she didn't want it.  It's really bad."

I'm going to stop here to clarify something because I am treading on delicate territory.  I am not going to go into anything about reproductive rights, or when life begins, or anything like that.  That is not what this blog is about.  Moving on.

At this point in the conversation I was faced with two choices. The first choice was that this woman is a stone cold stupid bitch.  I mean bitch on the Ann Coulter level of Bitchdome.  That reminds me of a joke.

Ann Coulter walks into a bar, the bartender says, "Why the long face?"
Then the bartender beats her senseless with a softball bat wrapped in barbed wire.

The second choice was that what I might be experiencing was a difference in how various cultures view those with special needs.  I have been told that in the past the Japanese viewed any physical deformity with great shame.  I thought to myself that perhaps this was a view that was prevalent in many Asian cultures.  I didn't have time to look it up mid conversation, so I gave my co-worker the benefit of the doubt and assumed that she was not being rude, just responding to an  individual with Down syndrome in a way that is appropriate in her native culture.  Not unlike a person who is told that being gay is an abomination their entire life without ever actually meeting a gay person may respond.  If an individual grew up never having that "truth" challenged then why would they not think that homosexuality is an abomination.  Then again, a few lines after that verse in the bible it also says that shellfish is an abomination and I have yet to read a news report on Red Lobster being protested by the Westboro Babtist Church.

Moving on.

The academic that I am I was excited for the opportunity to educate her, "There is nothing wrong with her, she just has Down syndrome."  To me, and many other parents of children with special needs, this statements makes perfect sense.  To her it must have sounded like I was saying, "What do you mean your computer is broke, it's just in two pieces now." I make this assumption based on the look of confusion that spread across her face.  She then asked if my wife had known that our daughter had Down syndrome prior to giving birth.  I did not have the time or presence of mind to capture my wife's elegant thoughts on this question which can be viewed here.  I informed her that, yes, my wife did know.

She then asked, "Well why did she have it then?"  in retrospect I am impressed at my ability to not turn from loving and caring father into a machine that's sole purpose is to dispense neck punches to undersized Asian women.  After all, what parent doesn't love having their child referred to as "it".  This coupled with a display of arm movements which can best be described as flabbergasted.

I put the question back to her as to why wouldn't my wife have her, after all, there was nothing wrong with her.

The conversation ended here due to the fact that we were suddenly expected to do work of all things.
I am still unsure if her response to my daughter was ignorance driven, some good old fashioned prejudice, or culturally driven.  Which brings me to my next point.  Other cultures are stupid.  Dammit out of time, I will have to tackle that one next time.


L&P 

The R Word

As we go through life our experiences shape who we are.  For instance, I used to hate the flavor of coconut.  Then one magical night I got pretty tipsy on Malibu rum and cokes.  Now I just hate the texture of coconut.  
I am the parent of a special needs child.  Prior to this experience I had, on occasion used the R word. Many of us have done it, and lets be honest there was a time and a place when we all laughed at it.
Needless to say, now that I am the parent of special needs child, I abhor it's use and have since taken corrective action.
I have heard the use of the R word defended in many instances.  Please read the following points and counterpoints. 
Point

I'm not actually making fun of the retarded, they can't help the way they act, I'm just making fun of people that act like them that should know better.

Counter Point

“Ray I'm not saying that you are black, I'm just saying that you are late to work... you know, like a black guy would be.” This would get you face punched.

By Kimbo Slice

 Point

They don't know any better so how could it hurt their feelings?

Counter Point

Sometimes they do know, and even if they don't it is an interesting insight into the type of person that would be terrible to another human being because they could get away with it. Using this same logic we just lost the faux paux on roofies inspired date rape and sticking your room mates toothbrush into your asshole.

Point

I have a cousin that has cerebral palsy, so I get a pass.

Counterpoint

No, HE gets a pass.

Point

Carlos Mencia does it

Counterpoint

Carlos Mencia does it

Point

I think that it only really offends the people that are their advocates, fuck those guys.

Counterpoint
Those using this defense either have no idea that we advocates are involved in a daily battle simply to keep those close to us alive or are simply assholes that know that they are in the wrong but are to damn stubborn to admit it.

Point

Oh I don't mean it that way.

Counterpoint

When I ordered a Diet Coke what I really meant was coffee. Words mean things. They have definitions. The only thing keeping the dolphins from taking over are thumbs, language, and the fact that we know better than to bet on the Chicago Cubs. Keep a stranglehold on the shit that tumbles out of your mouth because people will and do judge you on what you say.

Point
It's a technical and/or medical term.
Counterpoint
Yes, at one point in time this was a socially accepted term.  Given the proper (medical) context, it occasionally still is. Language, like everything else, evolves.  It is no more socially acceptable to call an individual with Down syndrome the R word than it is to call a black person the N word or Anderson Cooper a "confirmed bachelor".

Sorry Ladies

Conclusion

Using the R word is inexcusable.  Worse than that it is a missed opportunity. You are trying to inform an individual usually of an opposing viewpoint that they are of less than average intelligence. Going to the insult well and coming up with retard is hack. You can do better. Take that round out of the clip and replace it with a few new ones, try them out and wait until one sticks. If you need to take someone down a notch, lets not do it by comparing their actions and opinions to those that were born with an extra chromosome and are doing their damnedest just to get by. Lets pick a new, more deserving example of drool inspiring simpletonism.

One Suggestion

One of the ways that the LGBT movement gained momentum was by getting out of the closet and letting their friends and neighbors know that they they were indeed, friends and neighbors.  In other words, it's a lot more difficult to claim to hate gay people when you find out that one of your best friends is gay.  Familiarity breeds acceptance.  In keeping with this theme I would like to introduce you to Maggie in hopes that the next time you consider using the R word, she crosses your mind and you reconsider.

She loves anything with Disney Princesses, Abba, They Might Be Giants, the movie Grease, and pretty much any other musical.  I have been lobbying for introducing her to the South Park movie but her mom has thus far shut that plan down.
She has two sisters.  One is a year older and infinitely patient and loving.  The other is a honey badger.
She is mostly non-verbal but does have a limited vocabulary and can use some sign language.
She has an infectious laugh and smiles with her whole body.  
She loves loves loves to dance.
That is Maggie.
I recommend attempting to replace the R word with the word Ridiculous.  This way you can get one syllable in and still turn it around.
L&P

Why do you ask?

As most of you know I have an 11 year old daughter with Down syndrome.  She brings tons of joy and laughter to our lives, but she is by no means "very loving" or "really sweet" she is her own person with likes and dislikes and mood swings, orneriness, silliness and sweetness. I really don't believe she falls into any generalization about persons with Down syndrome.  She has had many health problems including two open heart surgeries and one closed heart surgery, diaphragmatic hernia repair, and too many other surgeries to count, several hospitalizations due to pneumonia's and other infections.  It is most likely that due to these surgeries and other illnesses she is more developmentally delayed than she would have been had she not experienced so many illnesses.  It often feels like my life is largely devoted to keeping her healthy. She also has, what we like to refer to as a "side" of autism.  She is largely non-verbal, but she uses a device to help her communicate, knows a few signs and has vocabulary of about 100 words, but her receptive language is expansive. 

I adore her.  I would not want my life to be any other way.  She is perfect.  I would choose her again and again.  My love for her is as deep and complex as it is for my other "typical" children.

What I find totally fascinating is that I am constantly asked if I knew she had Down syndrome before she was born.  The answer is YES, I did know.  I was 11 weeks pregnant when I learned I was expecting.  When I had an ultrasound to see how far along I was, the ultrasound tech detected thickening on the back of her neck which would indicate a chromosomal abnormality.  I then had an early amniocentesis which clearly identified her chromosomal abnormality as Trisomy 21, meaning she had an extra 21st chromosome.   I was devastated. I did a lot of grieving.  I felt like I would never be able to live a "normal" life again.  I did not want to be different than everyone else.  But as I pondered all of the families I knew, I realized that all of us are different in some way.  Some families have children with ADHD, Autism or drug addiction.  Very few of us are able to know what our children face before they are born.  So for me, continuing the pregnancy was a no brainer. She was my BABY, and I already loved her and wanted to protect her.

In the months leading up to her delivery, I did lots of grieving.  I also did lots of research.  I knew through a fetal echocaridogram that she would need open heart surgery by the time she was 3 months old.  I learned that kids with Down syndrome benefit from early intervention and lots of stimulation.  I prepared my life to welcome this new baby into our family.  I had friends who agreed with my decision to continue my pregnancy and I lost a few friends who thought it was cruel to bring her into the world.  For me the decision was deeply personal, not something I thought anyone else had the right to weigh in on. 

By the time Maggie was born I had prepared myself in every way I knew.  When she arrived, I was shocked by was her perfection!  She was so beautiful with a head full of silvery hair and wise blue eyes that could melt your heart.  I had done most of my grieving prior to her arrival and was able to rejoice in her flawlessness. I was able to open my heart to her and begin the battle for her survival.
So the answer is yes, I knew.  That is the beginning of Maggie’s story and my journey as her mom.  She is a blessing, as all children are.  She is zany, and I mean zany.  My life is filled to the brim with adventure.  She challenges me to be a better mother and a better person.
Please feel free to ask me questions about Down syndrome, I love to answer them.  In many ways she is different than many children, but her similarities are many as well.

This is Maggie. She has had an AV canal repair at 11 weeks, and Mitral valve repair at 3 years old, and a vascular ring repair at 9. She is quite a little character!

Adventures in You Can't Make This Shit Up Vol. 2

As a parent of a special needs child there are many challenges.  Eventually you get used to the stares and rude questions.  But in the grand scheme of things the curiosity and ignorance of strangers is small potatoes.  The daily hurdle that is the toughest to clear for our family is the potty training issue.

I feel that I should give some background on our kiddo to lend some perspective.  Our 12 year old was born with Down Syndrome.  Yes my wife knew ahead of time and that is a story that will be addressed at a later date.  Children with Down Syndrome vary in ability much like other children.  There are those that are super kids and, physical differences not withstanding, have very little difference them and typical children.  Think of Lauren Potter from Glee.

Also known as, the girl that turns me weepy.

Then there are children on the other end of the spectrum.  Our child is largely non-verbal, has a dash of autism, has had three heart surgeries, one of which was botched which caused her intestines to grow up onto her lungs which reduced her lung capacity, and chronic pneumonia.  Also asthma, and as I mentioned earlier, the potty training issue.

Over the past couple of years we have narrowed down the time in which she needs to spend in pull ups to the sleeping hours. This is not to say that there are not accidents, just that we have about a 30% success rate of using the toilet during the day.  This is only with number one.  Number two usually ends up on the bedroom floor and picked up via rubber gloves and much gagging.  This is also why a phrase commonly heard in special needs house holds is, "Please tell me that's chocolate...dammit."

This brings me to the events of two mornings ago.   While our child has mastered getting herself out of her clothes, she still requires a bit of coaching in how to get into them.  Many have been the morning when she has prepared herself for school in a Halloween costume.  Part of me things, F it, she looks cool.  The other part of me thinks, she already gets enough weird looks and takes corrective action.

We were to the getting out of pajamas stage of preparing for school when I saw what would ultimately lead to this entry.  You see my young one has her own special way of doing many things. I believe that this is brought about, not by the fact that she has Down Syndrome, but by the fact that she is awesome.  For example, do you like ranch dressing? I bet you do and I bet that you like to pour it into a bowl and extract with carrot sticks and celery.  Well my child took one look at that equation and said, fuck the rabbit food, I'm digging in with a spoon!

Why didn't I think of that?

As she has a unique system for all things, removing her pull up is no exception.  Rather than lowering said pull up to her ankles and simply stepping out, my daughter removes her pull up Hulk Hogan Style and simply rips it off her body.  I swear when she does so I can hear in the distance someone singing, "I am a real American!"

99 times out of 100 this is not a big deal.  Unfortunately this was that 100th time.  You see on the laundry list of health issues that my child is host too, constipation one of my least favorites.  True it does lead to less clean up, but it also leads to occasional poo pellets in the base of her pull up.  Again, not usually a big deal but when the fervor with which she removed her pull up met the elasticity of the pull ups waist band the result was a poo slingshot which peppered my face and neck and chest and arms with her leavings.
 My  reaction was, of course a quick gag followed by a flurry of face wiping and "ohmygodohmygodohmygod".

As a parent to a special needs child I have what many would consider, an interesting life.  I deal with things that would never even enter the world of most parents.  But this was first time that I have actually ever been, "Shit faced".


L&P