"That's so retarded!"

More Alike Than Different

by Andi Sligh

People who don't have experience with disabilities don't quite know how to react to us. Many times, an individual's discomfort with disability prompts them to speak in clichés or act awkwardly. As the mother of two children with disabilities—my daughter has cerebral palsy; my son has Down syndrome—I've encountered many interesting reactions over the years.

Talking with other parents of children with special needs, we all seem to agree that certain things people do and say drive us a little nutty. Unfortunately, they're some of the most common reactions we encounter, and most are seemingly innocuous.

We are truly more alike than different, and I want to put the typical folks at ease, so I've prepared a list of the Top 5 Things to Avoid When Interacting with a Special Needs Parent:

"God only gives special children to special people."

I appreciate the sentiment, but what exactly makes me more special than another parent? I'm kinda lazy. I swear. I avoid my daughter's school field trips like the plague. Room mom? Never!

Everybody loves a compliment, but the truth is that I'm not special and I'm not amazing. I'm just a mom. If there is anything about me that is special, it's that I have special kids, not the other way around.

"You are so much stronger than me. I don't know how you do it. I couldn't handle it."

Let me let you in on a secret: when it comes to your babies—whatever it is—you handle it. The only alternative is to crawl into the fetal position and pretend it's not happening. But that's not a good way to live, so you have to eventually get off the floor and face it, because your babies are counting on you.

"I'm so sorry," or worse: The Pity Stare

Here's another secret: a lot of us special mamas actually feel sorry for typical parents, because you miss out on being a part of our community. When your kids achieve things, it's generally not a huge deal (after the first kid, anyway!). But everything is cause for celebration in our house!

Yes, there are times when life is tough. Yes, there are times we wish we were like you. But just having this thing—this challenge—doesn't mean that our lives, or those of our children, are sad or tragic.

No one is perfect; we all have flaws. Throughout life, we each choose how much of our flaws we reveal to those around us. People with disabilities have awesome strengths. The main difference is that they can't hide their weaknesses like the rest of us.

Critical statements about our parenting

(including dirty looks)

Sadly, there are a lot of less-than-stellar parents in the world. But before you make a loud comment while standing in line for the Pirates of the Caribbean ride about how strollers aren't allowed, stop to think. Maybe that stroller is being used as a wheelchair for a little girl who doesn't have the stamina to stand in line for 45 minutes to see Jack Sparrow.

Occasionally, we do benefit from our specialness. But more often, we are like salmon swimming upstream. Please don't begrudge us the opportunity to do things that typical families do. Cut us some slack if every once in a blue moon we actually have it a touch easier.

"That's so retarded!"

Most people who use the R-word probably don't know how their words affect people with intellectual disabilities, their families and friends—we understand that. When questioned, they'll say, "...but I didn't mean..." and I'm sure that's true. But the bottom line is: the R-word is never used to describe something or someone in a positive way. "Retarded" is never a compliment.

Differently-abled children (and their parents) have dreams, just like typical folks. We all need friends and love. We are more alike than different. Don't let the tiny things that distinguish us separate us.

(This article is a reprint from Dandelion Bay Area Summer 2012)

RETARD....... I'm so retarded, that's so retarded, yours so retarded etc etc etc

I'm so retarded! That's so retarded! Your so retarded!

Why is the R-word so loosely used by so many in our culture?? Well because some people simply don't realize it's hurtful not only persons with disabilities but to all who love them. People who use the R-word are not evil, they are simply careless with their choice of words. Ok just because I have been blessed with a beautiful daughter with special needs doesn't mean I'm a saint or some kind of special person. I too used the word "retarded" once upon a time. In fact to this day I have to work hard in my mind to CHOOSE better words to express myself but I CHOOSE to be mindful EVERYDAY it's not easy but I do it for my Aliyah. It's a matter of respect and that's it. 

So it's been all Rainbows and Butterflies right????

  Two days after Aliyah's birth on October 31, 2010 we were discharged from the hospital we packed our stuff and got ready to go home. Holding my beautiful newborn daughter I was wheeled down to the hospital exit by a friendly nurse. My husband Ricky pulled up our SUV and the nurse helped us buckle our little Muffin into her new car seat correctly. It was a beautiful sunny day just like the day we brought our first born daughter Maricela home almost 4 years before. This was all surreal to me the world looked more beautiful than I had remembered it before but at the same time I was completely terrified that this was the "beautiful" world that would not EVER except my daughter because she was not "perfect."

  Shortly after we arrived home I turned into an anxious mess! I was so afraid of doing something "wrong" and further "damaging" my baby girl. At the hospital I was able to nurse Aliyah a few times but she was so small at 5 lbs 7oz that she wouldn't stay awake long enough to feed for an adequate amount of time plus as with my first child because of my nipples being on the smaller side, {I know! TMI hahaha} both my babies had a hard time latching on to me. I consulted with a Lactation Consultant which advised me to nurse my baby with a nipple shield {I HATE THOSE THINGS!} every two hours plus pump afterwards 24/7 (which hurt like hell!) to keep my milk supply up. I then had to bottle feed the breast milk to Aliyah after nursing her to insure she was getting enough since its easier to drink from the bottle vs the breast. OH MY GOSH!!! that was a lot of work! I felt like a cow milking myself all day and all night running on no sleep it was horrible. After a few weeks of this hellish task I was starting to loose it big time, I was reaching my breaking point. I just didn't want to pump and feed anymore I just couldn't keep doing it, I asked to see the Lactation Consultant again I wanted to work with Aliyah so she would latch on to me without the shield so that I wouldn't have to pump every two hours! We worked hard but because of my darn nipples my baby just couldn't latch properly without the shield. The LC then told me that some "studies" in Europe showed that breastfeed children have higher IQ's and that because Aliyah had Down syndrome it was vital that I continue no matter what. Against my own instincts I agreed to keep going, if I can advise any woman "just follow your own gut you and only you know your limits."

  Mind you I was still seeing Ms.V for weekly therapy sessions this whole time, she had advised me that since pumping was causing me so much stress and most importantly sleepless night after, sleepless night (which happens to be one of my major triggers for depression) that I should stop pumping and start formula feeding my baby. But I'm stubborn and I didn't listen to myself or to Ms. V boy was that a BIG mistake.

  By Thanksgiving I was a complete disaster I couldn't sleep at all, couldn't eat, I was crying all the time I was so disappointed and angry with my own body because I couldn't do what most woman don't think twice about that is feeding their babies without machines and gadgets. Not only did I do "this" to my baby {by that I mean I gave her DS} (because I was born with a translocated 15th and 21st chromosome causing her to have an extra 21st so in my mind I was to blame for all this) but I also COULDN'T even feed her.

  By this point I also started to notice some of her "differences" for example the shape of her eyes and the way they would kinda cross at times many friends who didn't know about her diagnosis would make comments that she looked "Asian." Her tiny size, she was a few months old but was still the size of a preemie baby. She also never cried  at all we had to set alarms to awake her for feedings like she could care less if she got fed this made me so sad. Her little feet would turn blue when I was feeding her that was so scary but the Doctor's kept saying to my husband and I that it was nothing serious. I kept blaming myself for all these "defects" I had given my baby. I would cry and pray "Why God? Why did this happen? I would give my life to you so that my baby would be cured of this." but that never happened no matter how much I begged and pleaded with God.

 
  In December 2010 my depression was taking a turn for the worst. I was starting to really hate myself, I wanted to die, in my mind I blamed myself for giving Aliyah Down syndrome. Ms.V my therapist was watching me closely every week and suggested I check myself into a partial hospitalization program where I would receive 6 hours of group therapy a day 5 days a week. She insisted I needed to be removed from my mommy duties to take care of my mental illness so that I could avoid getting sicker and end up in the hospital inpatient. With great pain I agreed to treatment since I was like a zombie by this point and I wasn't really much of a mom to my girls anyway. Ricky my husband took some time off work to care for our daughters. This was so hard for me, I like to do it ALL with no one's help, I had so much guilt for just passing on my responsibilities to my hubby but he's a REAL man he stepped up once again. I started my group therapy classes and finally agreed with my Doctor to start medication for my depression symptoms. After a six week treatment I was stepped down to 3 hrs a day 3 days a week and finally discharged to resume my normal life.

  The group therapy did not "fix" my problems or "cure" my daughter but it was an eye opener I was able to sort through my negative thinking and see the reality of this situation. I was finally able to believe for the first time that I DID NOTHING WRONG, I WAS NOT TO BLAME FOR ANYTHING! Aliyah was born with Ds because it was God's will, just like it was God's will that I was born with my chromosome disorder or you were born with X color hair and X color eyes. I learned that life's hard and we all have our trials in some way or another it's all in how you look at these challenges in your life. In some ways Aliyah has given me so much free "therapy" she shows me everyday that no matter how hard something is you keep trying, she never gives up. She's my hero. Of course I am human and my depression has never went "away" (that's the nature of the beast) it creeps up on me from time to time but with the proper support and medical intervention I have been able to live my life to the fullest with my loving husband and two beautiful daughter's. I'm now happy to be on this roller coaster that was terrifying at first but now I see it as an adventure, a wild one full of twists and turns. Hold on tight!!!  

HAPPY DOWN SYNDROME AWARENESS MONTH

http://www.ndss.org/My-Great-Story/My-Great-Story-of-the-Week/

WHEN???

This blog was supposed to be about past events leading up to the present but for today I will fast forward to September 4, 2012....

Today I came across this video, a News report about a teen with Down syndrome who was NOT allowed on an American Airlines First Class flight ONLY BECAUSE OF HE WAS BORN WITH DOWN SYNDROME!! http://landing.newsinc.com/ktla/video.html?freewheel=91045&sitesection=ktla&VID=23795661

It hurts my soul so bad to think this is the world we live in it's 2012 and still people have a LONG way to go in acceptance of persons with " DIFFERENT-ABILITIES "

When will persons with "intellectual disabilities" BE TREATED AS JUST HUMANS?? LIKE EVERYONE ELSE ON THIS EARTH... WHEN WILL THEY HAVE THE SAME RIGHTS TO LIFE?  WHEN WILL THEY HAVE THE SAME RIGHTS TO BREATHE THIS WORLD"S AIR OF PERFECTION AND JUST BE PART OF HUMANITY!?!?!?!  When will the world see that!!!! It's disturbing and quite sad this could happen to any person and not to mention his parents pain and humiliation. :(

God NEVER makes mistakes

    There were many twists and turns along my journey to meet my daughter Aliyah or they may have been signs I will never know for sure......the first was that my husband and I had actually decided to start trying for another baby back in late August of 2009 I called my OB's office to set up an appointment but was informed they were booked out until January of 2010!!! Crazy huh?? Finally in January 2010 I went in for the removal of my IUD at that time my Dr warned me that since I had the IUD for close to 4 years it would be a while before I could conceive up to a year. Well.....I became pregnant within a month of my IUD removal.
 
   Shortly after I discovered I was pregnant I started bleeding and cramping, worried something was terribly wrong and scared to death I called my OB she told me that it either was nothing serious because some women have minor bleeding in the first weeks of pregnancy BUT that bleeding was also sometimes the first sign of an early miscarriage and there was nothing they could do to stop it. :(  I was advised to stay in bed and take it easy sure enough after a few days of rest the bleeding stopped. {something most may not know is that as high as 80% of baby's conceived with Ds miscarry :(  so in other words these baby's are miracles!} Now I just had to wait until my first prenatal visit at 10 weeks along for the ultrasound to confirm if there was a viable fetus in my womb....Crying from pure joy I was so relieved when I saw the tiny bean shape with the center flickering away, it was my baby's beating heart! Thank God!!

    As my prenatal care progressed I was asked multiple times if I would be interested in the triple screening test for "birth defects" by the way may I say I HATE THAT TERM!! Anyway.... I refused it twice then the third time I was asked I agreed to have it done. I remember so clearly what I said to the Dr "it wouldn't matter anyway" little did I know!! By this point in my pregnancy it was cutting it close to the time frame in which these screening tests needed to be done so I was sent to my local lab that same day for the blood work as for the ("nuchal translucency scan" I did NOT know this at the time but it's a fancy word for a special ultrasound of the baby's neck.) I was sent out of Sacramento to Roseville CA about 30 minutes away at a later date.

    I went in for the ultrasound portion of my prenatal screening I was so excited because I was going to see my baby again! :) My baby moved around like crazy so the poor ultrasound Tech was having a hard time getting the measurements she needed for the screening test. Finally my little one settled down enough for her to do her job, I could tell she was really trying to measure and remeasure "something" on the baby very carefully, she then asked the Perinatologist { A subspecialty of obstetrics concerned with the care of the fetus and complicated, high-risk pregnancies.} to come try he also measured and remeasured diligently. I at this time had no idea something was "wrong" the Doctor then asked if had I done the blood work yet? I told him I had done it in the Sacramento office he then told me they couldn't locate my blood results in the computer which he needed to combine with the ultrasound in order to come up with a proper screening result so he would need to call me later if anything came up.

    Well........ the Doctor never called. For some reason I just did not call him to follow up which I usually do with everything! I just simply assumed that with no call nothing was wrong. (Mind you that back when we had these screening tests done at 13 weeks my husband and I had decided since it was early in the pregnancy if there was something "wrong" we might consider terminating depending on the severity of the problem.)


   Four weeks later at my regular prenatal visit with my Ob (which I will call  Dr. Superman) asked me "if they (at the Prinatologist) had informed me that my baby's neck measured a little big?" I answered "No" and giggled because I thought to myself  "its probably a boy! My husband is built like that I guess my kid will play football someday, cool!" Dr. Superman then excused himself  politely he went into his office next door but I could hear him speaking with somebody over the phone and he sounded upset he was kinda yelling at them. He then came into my room again sat down and said in a very kind tone "I'm sorry that they didn't call you with your results sooner, but the screening test show that your baby has a 1 in 73 chance of being born with DOWN SYNDROME."

I just looked at him with no reactionm I WAS IN SHOCK and I had my then 4 year old with me I didn't want her to see me cry. Dr Superman look concerned he asked me if I knew what Down syndrome was? I said "Yes." I then asked him "how can we know for sure?" he said a amniocentesis would be the next step to confirm or rule out the diagnosis. I asked him "What can I do now? What are my options I'm 17 weeks along?" He told me "It's up to you, you can do whatever you like at this point." { I will forever carry the guilt of my first reaction to this news } He set up my appointment for the next morning for the Amnio I then left. As soon as I got into my car I just started BAWLING!! like a baby, my poor daughter was in the back seat listening to me I told her that mommy's tummy was hurting. I then called my husband Ricky at work to let him know what was happening he was not upset by the news or he didn't show it.

    As you have read in my post about our diagnosis we did the Amino the next day it came back 2 weeks later confirming our baby was in fact going to be born with Translocation Down Syndrome then 2 weeks after that we found out that I was born with a chromosomal abnormality myself and so on and so on.....So as you can see there were a lot of twists and turns or "signs" whatever you want to call them, everything happens for a reason God was in control and he knew what he was doing even if I at first didn't want to follow the path he set for me.


     

Drying my tears, Staying Busy, Preparing Maricela for Aliyah's birth and The long awaited BIG Sister Party!

    In the mist of my pain and depression I tried my best to NEVER let on to my daughter Maricela {just four years old at that time} that something was "wrong" she would sometimes walk in on me sobbing my eyes out and just at the sight of her little confused face I would suck it up as best I could. Unfortunately she did catch me in full blown crisis a few times but thankfully my husband or mother were always there to distract her and explain "Mommy's crying cuz her tummy hurts" my tummy hurt A LOT in those days.


   Maricela enjoyed going to all of my prenatal appointments since I had 9 ultrasounds she loved seeing her baby sister on the screen swimming around in my belly. She was so excited! to be a Big Sister in her eyes  Aliyah was just her baby sister there was nothing else about it. Looking back on this....I envied the way Maricela was able to love Aliyah so purely even before they met face to face.

    As Aliyah's due date approached started I to educate Maricela about Down syndrome without giving her too much information as I didn't want to frighten her. I didn't tell her about the holes in Aliyah's heart until we were in the Cardiologist's office for a echo, I simply told her "that her baby sister had two boo boo's in her heart and after she was born the Dr's would make the boo boo's better."

    At bedtime I read her children's books about Down syndrome, I was trying to "prepare" my little girl for her baby sister's condition. Maricela is a very sharp kid so she understood everything! at four years old she was a little expert in Down syndrome.

Here are a few of the books we read together :)

http://www.amazon.com/Well-Paint-Octopus-Stephanie-Stuve-Bodeen/dp/1890627062

 http://www.amazon.com/My-Friend-Isabelle-Eliza-Woloson/dp/189062750X

http://www.amazon.com/Best-Worst-Brother-Stephanie-Stuve-Bodeen/dp/1890627682


    Despite the crying spells I did have a four year old little one after all, so I stayed pretty busy with her and all her activities she had during that summer she was in ballet, kid's zumba, swimming lessons, soccer and weekly playdates etc etc. I tried my best and kept going I didn't want my daughter's daily life to be affected by my grief I had to put on my fake smile for my daughter's sake and that's what I did.

These photo's were taken during those weeks and months following our prenatal diagnosis......

Soccer summer 2010

This is what was waiting for me in the mornings such a blessing 

playin with Grandpa 

evening practices 

My super model 

Birthday Parties 

visits to Big Mama's 

Playdates 

Mari & Z

Swim Lessons 

Shopping for Aliyah

2010 GO!!! GATORS!!!!

Mari and her Coaches 

end of another soccer season

Summer 2010 Zumba Classes

Go Mari!!! 

shake it baby girl!

Weekly Playdates with E

<3

One little angel Ms. R.B.

Zumba Performance   

more birthday parties Mari & Lil 'G

sword fights with C 

My strength 

My Joy 

My Hope 

Spending time with our Pumpkin 

Baby Sister will soon be here! 

BALLET 

Super Star 

My beautiful Ballerina 

Mari and T

Out Bowling 

Go baby you can do it!

My pretty Princess Mari 

Movies 

More Zumba 

Playdate with the Boy's 

Zoo 

Where I worked daily with Ms. Sandy's Parent Participation Preschool Sutterville Elementary 

Preschool Field Trip's once a week 

And finally my baby shower oops I mean Maricela's BIG Sister Party! Thrown by my Mami Teresa and Mama Felicia with the help of my Sis Eva.
There were so many friends and family there to support us with their love for our baby girl Aliyah.
Thank you ALL so much!
We love you!!!

Cristina, Alina and Ruben 

Jen and baby J

Luz and my Bro Miko

Lavina F. and family

My Tia's Chula's

Lavina's little Girl's

Michelle and baby Joey

V

Tatiana, Adriana, and Mama 

Cristina R

The Ketner Family

Chris and Mako

My beautiful Mami Teresa 

Korina thank you for all your advise 

The BIG Sister opening gifts for baby sis

pretty pink <3

My wonderful mother's 

My uncle Adan the strong man of the Oseguera Family

LOL

Cake Time!! thank you Tatiana for this yummy gift <3

Me and my BBF Chris 

Tia Irma and Tio Adan

My beautiful cousin Sandra 

Tia Rosa and Maria 

Diaper cake made by Christina 

We had everything we needed, the nursery was freshly painted a lovely shade of Lilac and decorated beautifully, the hospital bag was packed and ready to go all that was left was to wait for Aliyah to come into our world..........