Wednesday, November 27, 2013

We are all "People First"

Language is powerful, and unlike what we learn as children from the well-known saying “sticks and stones may break your bones but words can never hurt you” words do hurt.  They can be powerful enough to create limitations and set low expectations. As a society we understand that it isn’t socially acceptable to use racial slurs, or to call others degrading names. But, why is this same social rule not transmitted to all situations, specifically towards people with disabilities? I recently read that around 54 million Americans have a disability of some kind. Now, the word disability is broad and there are many different types of disabilities out there. BUT, I can 100% assure you that even though their disabilities may be different, every single one of those 54 million Americans would agree on one thing: they do not want to be defined by their disability, they are people first!

Take a moment to consider their feelings. How horrible it must be to feel as if your disability embodies all of who you are, causing others to pity you, or think that you are helpless.  By using labels, it creates an image that they are “less-than” or "not the same". They become prisoners to their disabilities. It is time to help them break free from the stereotypes and from the shackles of their disability. They are people first! We are all people first. 

As individuals we are constantly changing and evolving who we are. People with disabilities do not always have that same privilege, because they are defined solely by their disability. If you do not use people-first-language you are robbing others from discovering who they really are, you would be taking away their identity.  I understand that the “politically correct” terminology for special education is always changing and hard to keep up with. You probably have said things in conversation that you did not even know was hurtful or offensive. However, you can be sure that one thing will always stand true, when referring to a person with a disability, the person always comes first before the disability or diagnosis! Using people-first-language is not rocket science, it is just common courtesy, and it is the respectful and polite thing to do.

 As a teacher with a special education degree, I have learned all about using “people-first-language.” However on July 25th, it all became very real to me.  My son, Anthony, was born with Down Syndrome. After receiving this diagnosis, I understood more than ever why it was so important to use appropriate language.  I do not want Down Syndrome to ever define who my son is. My heart aches when I hear people refer to him as “the down’s boy”, or “my down syndrome son”. It pains me to even write those things. He is amazing, loveable, funny, and sweet…just like any other baby. That is how I want him to be treated, just like any other baby. He just happens to have Down Syndrome, but it does not make him who he is. It is a little part of his whole; it is not a primary defining characteristic.  I want Anthony to have all of the opportunities and experiences he can in life. I want him to grow up and create his own identity.  I know he will accomplish amazing things, if we give him the chance. I will never limit him because of his diagnosis, and neither should you.  So please, help me to spread the knowledge of using people-first-language and we can start putting emphasis on the person rather than the disability.

Here are a few examples of how to use people-first-language:
Say this:                                                                                          Instead of this:
He has Down Syndrome                                                     Downs boy/ down syndrome person
He has Autism                                                                    He’s autistic/ the autistic person
She has a cognitive disability                                               She is retarded
She receives special ed.  services                                        She is special ed/ a special ed. girl

Child/person with disabilities                                               Disabled person         

When I first learned about Anthony having Down Syndrome I came across a few videos with messages from the NDSS about how we are all more alike than different. I decided to make my own video since these videos were made with adults. Please watch and share the video staring Anthony and his friends! I will also post the other two videos with the same message!

Monday, November 25, 2013

Four Months Old!


Date: 11/25/2013

Age: 4 Months

Weight: 14 lbs 0 oz

Height: 25 ½ inches

Head Circ.: 40.32 cm

Eating: He eats 4-6 oz every 2-3 hours

Sleep: His bed time is around 9:00 to 10:00. He sleeps through the night and wakes up around 7:00am.

Likes: Laughing and smiling, his jumperoo, Elmo, his keys, TV

Dislikes: being sick and coughing

Milestones: looking to both sides, hand/eye coordination with grabbing toys, kicking feet up, shaking toys, holding his head up for very long periods of time during tummy-time, tracking toys and people, jumping and standing with assistance, sitting straight with guidance, very close to rolling over!  

being silly with daddy before taking the 4 month old pictures

Hey Mom! Just hanging with my daddy!

ooohh you say I'm four months old, mommy?

wooohoo I'm such a big boy!

Watch this karate combo mom! Pow!

Hiii-yah! watch out owl, I'm four months old! 

ooo! Mom did you see me kick the owl? 

Boom! Knocked that owl right out!

Just kidding mom! I love that owl!

Look at that bottom lip! This kid already knows how to get everything he wants!

Sunday, November 17, 2013

We're Back!

"I mustache you a question... did you miss me these past two weeks?"

Recently I have taken a little unintentional break from blogging. I have been so overwhelmed with everything going on that it has been hard to find time to write and edit videos. These past two weeks I found myself craving my warm bed after a long day versus blogging. Don't get me wrong, I did try. I kept putting it on my "to-do" list every day, genuinely wanting to cross it off... but it was always pushed to the very bottom with Anthony's needs taking priority. For over a week Anthony has been sick with his very first cold. Usually I love to celebrate all of Anthony's firsts, but this one I could have done without!The poor little man.

Last Friday we put Anthony to bed as we normally do, but we woke up not long after to a sound that I thought was Anthony banging his legs against the crib bars. Joe and I ran in to find Anthony struggling to breathe. In our fogginess from just waking up we fumbled to find the aspirator to help him clear his nose. We knew from doctors telling us before that even though babies can breathe through their mouths, they prefer not to. Anthony's nose was completely blocked and he was freaking out that he couldn't breath the way he liked to. So, we cleared his nose and put the humidifier on in his room. I tried to go back to sleep but my eyes were glued to the baby monitor. I couldn't sleep because I was so nervous that something might happen to him, I guess that is the one of the joys of motherhood! He was still really bad in the morning and I called the on-call doctor. She said that since the baby was still little, and he didn't have a fever, there really wasn't much we could do. We were advised to use the aspirator, saline, steam showers, have him sleep on an incline and the humidifier. A LONG couple of days passed where Anthony only seemed to get worse, and one morning he woke up with a low-grade fever. I decided to call the doctor again, just to make sure that there still was nothing else we could do. I just felt so helpless and I wanted my baby to get better! They told me to bring him in so they could make sure that he was fine. For the past few days Anthony was not himself, he wasn't eating as much as he normally would, and he was really cranky from feeling pretty horrible. He was also getting annoyed by the aspirator and every time he would see it headed towards his nose he would start to scream. But of course when we took him to the doctors he put on a show and was completely fine, the little stinker! Today Anthony is still sick, he is less congested but has developed a cough and has an upset stomach. Hopefully we will kick this cold soon, because baby needs to get back to normal and mommy and daddy need sleep!

Sick little boy with his aspirator and saline spray close at all times

I hate being sick, blah! 

 But I'm still so cute, even if I am sick! 

My Elmo makes it all better!
Stop right there daddy! Don't come any closer with that aspirator or you'll get it!

What else we have been up to these past two weeks:

On the 3rd Anthony had his first physical therapy session. She came over for an hour and worked with Anthony mostly focusing on his torticollis. She brought over a new product that was introduced to her just a few days ago at a torticollis conference. It was a little hat called the Tortle. Joe and I couldn't help but laugh when she put it on Anthony, he just looked so silly. It has foam built in on one side of the hat to prevent the baby from looking that certain way. It was developed by a pediatrician-mom to prevent flat head syndrome (It's one of those products that you see and say "Man, I wish I thought of that!"). Anthony has started to develop the slightest flat head on one side because of his torticollis. Our therapist told us that Anthony should wear the hat whenever possible, except bed time. It all sounds so easy and wonderful, but Anthony really hates the hat with a passion! For that first week we were really good at making Anthony wear the hat, but then once he got sick I became a big push over. I hated seeing him cry when I put it on when he was already so sick. So, I was a bad mommy and took it off to make him feel better. The therapist probably wont be too happy with us when she comes tomorrow, oops! But in all honesty, Anthony has been showing a lot of improvement in looking towards the other side, and I promise to be more strict about him wearing it once he feels better! For more information about the Tortle click here.

Anthony also had his second play date with his two besties Maddox and Antonella. He was awake and playing but once I took out the camera he decided he wanted it to be a sleepover and not a play date! 

Hey wake up Anthony and play with me!

We're the three best friends that anyone could have..

I also plan on going back to work this week... well, kind of! Since I am not a contracted teacher yet I did not have a specific maternity leave like other mothers. But, financially I need to go back to work for at least a few days a week. I figured I would ease into working again by subbing for 2 to 3 days each week while my mom and Joe's sister watch Anthony! I feel torn about the idea of going back to work. I miss teaching so so much, but I also know that it will be a big adjustment trying to juggle getting ready for work in the morning and getting Anthony ready. I am also nervous about finding time to pump in work, hopefully I will figure something out! And, honestly, who am I kidding, I will miss my little nugget tons!

I leave you with some of the wonderful pictures from Anthony's photo shoot after the buddy walk last month. A big thank you to Monica Jones for capturing these precious moments.

I did not have time before posting this to edit videos from the past two weeks. Hopefully I will put some up tomorrow! Don't forget to subscribe to my youtube account so you can see all of Anthony's videos!

Sunday, November 3, 2013

Hakuna Matata- Halloween 2013

This year Joe and I decided to host a family Halloween party! We figured it was the best way for everyone to see Anthony's costume, without us having to run around to each person's house to show it off. 
As always, even though I had been prepping for this party for a few weeks, it came down to the very last minute. Everyone was scheduled to arrive at 6:30, and I had planned out a whole entrance to reveal Anthony's costume. But, instead... I was blow drying my hair at 6:29 and had to throw all plans out the window. It is crazy how much longer it takes to get ready when you have a baby, and I was never fast before the baby either, ha!

I wanted to do a family "group" costume, but Joe hated all of my ideas. We finally settled on the Lion King. That worked for me, because I wanted Anthony to be something fluffy and cute for his first Halloween, and a lion was pretty adorable! So, Anthony was little Simba, I was the mama lion Sarabi and Joe was Rifiki. 
It's the circle of life!

Mama lion, Simba, and Rifiki

I really wanted to do an entrance similar to a scene from Modern Family: where their baby Lily was revealed to the Lion King music. I thought it would have been funny for Joe to walk down the stairs to "'s the circle of life..." while holding Anthony. Oh well! 

The party was a lot of fun, I loved seeing how creative everyone was with their costumes (and some of the Halloween themed dishes too)!
Sugar Bear, June and Honey Boo Boo

Lunch Lady, Old Man, Devil, Zombie

G.I Joe
"Superstar!" Mary Katherine Gallagher

The bats I was so proud of making! Another Pinterest success!

Some decorations. The Pinterest inspired banner says "beware"

Some of the great food... mummy wrapped hot dogs, dirt dessert, kitty litter cake

the two penguins 


Scary Mom Mom and Pop Pop

Mama and her baby lion

How could you not love that adorable little face?

All in all, it was a wonderful night! Anthony had a "minor" hiccup where he had a complete meltdown. As a parent, that was honestly one of the scariest moments... yes it was even up there on the scary list with him being in the NICU. At least when he was in the NICU I had the nurses and doctors there to make sure nothing went wrong. Anthony lost it, I dont know if it was being in the hot costume, or being passed around a lot at a noisy party... but it was all just a little too much for my sweet boy. I took him upstairs after his third outfit change (he was spitting up that much!) so that he could compose himself in a quiet room with just his mommy. He started screaming so hard that his face was turning purple. No matter what I did I couldn't sooth him and he just kept screaming harder. I swear I wanted to call the doctor because I thought something had to be wrong with him. He never screams, and if he ever is upset he is very easy to calm down. Not this time! I was so scared, and felt helpless. Joe came up and we both tried everything. I started to cry myself, which probably didn't help the situation. It was just so hard to see my baby so upset. He finally was able to settle down and I rocked him to sleep. Poor little guy was all partied out. "Hakuna Matata" little man... no worries, I promise you'll love Halloween next year!

I hope everyone had a very spook-tacular Halloween!