"Lighten up..." (The R- Word )

I am infuriated today… Gabby informed that today her band teacher used the R-word (retarded) today.

I am not infuriated at the fact that he used the word, rather that he disregarded my daughter’s feelings.

The fact that he cut her off as she tried to explain how her little brother, the little boy that has her wrapped around that stinky little finger, has Down syndrome, and how that word is degrading to people like her brother and insulting to those that love them.

Instead he told her to “lighten up, people call me ‘Baldy” all the time…” well Baldy, I assure you that being bald is not degrading your existence (per society) nor those the word “baldy” have a negative connotation and implies stupidity.

And like I mentioned, I am not completely infuriated that he used the word. Truth is at one point of my life, before I even knew what Down syndrome was, before one of my greatest blessings was ever born, I used the word often.

I didn’t mean to insult people with disabilities, although in some way I was. In some knowing way, I was.

When my phone (or some other object) started to act up, I would refer to it as a “retarded” phone… because it was stupid and dumb and worthless…  because the word retarded came from “mentally retarded”… and somehow, those people were dumb. Hence the usage of the word seemed appropriate.

Stab me in my heart, why don’t you. That is exactly how I felt when Ethan was born. Heartbroken.

So retarded doesn’t imply stupidity, I’ve learned. Sadly society has twisted the word.

Back to my point – I understand if he doesn’t understand  what the word means. I understand if he doesn’t see how hurtful the word can be.

But DO NOT dismiss my child’s feelings. Do not make her feel like less for standing up for what she believes in. DO NOT make her feel little in a room full of students. DO NOT shatter my daughter’s confidence. DO NOT teach her to hold in her feelings in matters that DO MATTER.

And middle school is tough! TOUGH! Not academically, but socially. This is where kids who don’t know who they are, fall in with the “wrong” crowd. This is a time of a child’s life where we need to direct them and feed them how amazing they are and how they CAN make a difference in this world. Lets empower these children not bring them down.

 

Thanks for the advice you gave my daughter, but I assure you that neither she nor I will “lighten up”.

By the way, did you know a man with Down syndrome, Sujeet Desai, plays 7 instruments… impressive.

 

-Erika

Just an update...

It has been a while since I’ve put some thoughts into words lately.

Blogging was definitely my outlet… my way to express my thoughts and feelings. And lately all of my feelings have been  all bottled inside. And honestly I’ve been so busy that I havent even had a chance to go over my own feelings in my head.  I know I have been struggling with some things lately, I just havent been able to reflect on them.

Also, life has become so **normal** that a lot of things just don’t faze me or I’ve learned to deal with/overcome/change… honestly having a child with Down syndrome just hasn’t been as scary as I thought. And to be even more truthful, I wasn’t necessarily scared to begin with, I was just brainwashed by society to be scared… because oh my gosh having a child that is different is SOOO scary…

It hasn’t been a walk in the park…  it does have its challenges but nothing that cant be overcome. Or at least I like to think so.

Well everything is fine and dandy in the Saldana household for the most part.

We did hit a very difficult time in our lives, but we are overcoming it.

The girls are doing great and they are about to become extremely busy with a (dance) drill team for a local park football team. I am already kicking myself for signing them up. Besides being very costly, all of the game times are on the weekends and I am very busy on the weekends! But I’ll make it happen somehow.

Ethan, well he will be 3 late August.

My baby boy. It is all still so very surreal.

I still love him more and more each day. My heart still skips a beat, every single morning when I see him. Through those dreamy sleepy eyes that he tries so hard to keep open. And yes, most of these mornings lately have been started off in my bed, because we have done the unthinkable, the #1 NO-NO I said I would never do…. : to let him sleep with us.

It starts off with us letting him fall asleep in our bed, me taking him to his bed once he is out and somewhere in the middle of the night, Ethan either quietly finds his way back to our bed or he very loudly calls out for his “dad”… and as if he was lost in the woods, there we go, eagerly jumping out of the bed and running to his rescue.

He makes every morning especially hard to wake up and get out of bed. I want nothing more than to just snuggle next to him and take in his scent. I place my cheek against his soft warm cheek, I kiss his tiny perfect nose, his pouty, even while he sleeps, lips.

I’ll admit it - I cant let him grow up. I love every second with him, I struggle with the thought of him growing up. I want him to be my baby, I want him to be small in my arms, small enough to cuddle in between me and his daddy, small enough so I can carry him on my hip (which I do a whole lot more than I ever did with the girls at this age)… I want him to stay just as he is. Just small. I want to chase him around the living room and hear his laughter, I want to laugh at him as he climbs on his toy trucks and tries to ride them. Just the way he is.

I know I cant keep him small forever. I know he is growing up and will continue.  I know.

Aside from becoming rather manipulative, his speech is still at stop. Not really going anywhere.

A few months back it really looked like it was going to go somewhere. He was repeating back words, almost perfectly. From “pancakes” to “I love you”. Then he got sick one weekend and he regressed. He is still attempting the words but not with much enthusiasm or clarity.

He was wearing his Spongebob swim trunks yesterday and he did say “bopbop”.

I really do not know what to think. A huge part of me wants to say that it is his hearing. I don’t believe he is hearing perfectly clear and nor can he hear himself. Many times it looks as if he has the word, you can see it in his eyes, but he holds it in. Almost as if he is scared to pronounce the word wrong so instead he stays quiet and just smiles at me.

An ABR test has been suggested by many.  

His eating has also not improved. He still has the same food items: pancakes, eggs, ramen noodles. Snacks on crackers, oranges, berries, cereal. Also tolerates donuts, yogurt, ice cream and peanut butter.

His school referred us to a Feeding Therapy place (with behavioral  approach, because at this point it seems to be more about his behavior and what he wants to do) but I just cannot make it work in our schedule. And it is something that we need to be consistent with …and well… I am just going to say, to be nice, that is just not going to work.

And that is a whole other story on its own. A battle I fight daily within myself…

And another big issue I am dealing with recently is his behavior. That is another post on its own. I promise to write about that soon. I really struggle with my feelings when it comes to his behavior. 

Some of you might have seen some of these pics already,,... but for the rest of the world - this is my Ethan!

 We went camping for 4th of July... Ethan had a blast!

 The beautiful Texas Hill Country. 

-let's see if I can make blogging a habit again!

Erika 

 

Photos of the week

What have we been up to?

All sorts of fun....

 and a photo of me as well! I've been holding Boudoir sessions once a month, since they have been such a great big hit and the last session was just way too fun for me to not join in!

XoXooXxoO

Just wanted to wish you guys a Happy Love Day. So what is wrong with a Holiday that is all about love? You don’t have to be married or  be in a relationship to enjoy your day. Celebrate the ones you love! A sweet gesture, a piece of candy, a note saying how much you appreciate them -something simple that will definitely bring a smile to someone’s heart.

TO ME, valentine’s day is not about me and my husband… I love him dearly and he loves me in a beautiful way (because I said so -haha!). We have other moments together to show each other what we mean to one another and show our love… But for my kids, it’s an extra special day to give them a sweet little gift and add an extra sparkle in their day.

And an extra day to show my girl friends how much I treasure our friendships! I had a lovely lunch with a couple of girlfriends and exchange gifts, totally made each other’s day.

Ethan made sure he spread his love today!

He made a Valentine for a classmate last night.

 NO, he didnt just want to show off all that hunkyness, we were working with paint,

 so that requires a shirtless little guy **WHISTLE**

 putting so much thought and love into his Valentine

 He is such a lover boy!

Happy Valentines, from my little love monster!

-erika

Momentarily- it brings me down

  

This morning a dear friend on FB posted about how she learned today that the kiddies in her 2yr old’s class can count to twenty. And she had a Ds mommy breakdown.  

I assume the differences in her son and other peers his age became very apparent at that moment.

(First I must say, neither one of my girls could count to THREE at that age.)

And I know this mommy, and she is a really amazing mommy and she has unbelievable love and faith in her son (don’t we all). But sometimes getting slapped in face with what it (ds) really is, is harsh.

In reality I think we all have our Ds "sad" moments, or whatever you wish to call them. Some of us might have them more frequently than others, and some of ours might be shorter lived than others, but I guarantee you they are still there. No matter how you feel about Ds.

I know most of the time I have positive things to say about Ethan and most of the time it seems like nothing in regards to DS fazes me. For the most part, it is true. I was able to accept Ethan’s diagnosis within a week, I didn’t love that he had Ds, but I accepted it. I later came to have an “understanding” with Ds, and we became tolerable acquaintances. You know, like a coworker you have to work with that you neither hate or love, but they are just there and you are able to tolerate them well and sometimes you even like them and you even go to lunch occasionally and you actually enjoy it. Yeah, that has been my relationship with Ds.

But lately, this “friend”  that I neither hate or love, is starting to annoy me and frustrate me.

Yup Ds is finally starting to annoy the crap out of me.

I love everything positive that has come out of my life because of Down syndrome. I appreciate the change in myself and my husband. I love that I can honestly say that we are better people because of it. Honestly, I appreciate my children more now than ever. I truly understand how blessed I am now.

But who am I kidding, Ethan’s delays are becoming more and more apparent. Really, it is what is and I can live with it, but sometimes it momentarily brings me down. Not for long, not for days or hours nor minutes, just split seconds. I know I cannot dwell on the negative. I can’t benefit Ethan if I stay in my funk.

But damn. It sucks.

To know that Ethan is a 2yr old little boy that functions more at a 1yr old level. To see your child struggle in areas where other 2yr olds are just flying by him.

The thing is, I am NOT in denial. I am around A LOT of people with Down syndrome. We have many dear friends with children with Ds of all ages. I’ve seen them all! From the ones that can talk your ears off to the ones that are nonverbal at age 20. So I know that anything is possible. And in all honesty, I will handle whatever comes our way and I will make the best of it. While it might momentarily bring me down, I know it will all be ok. But I just know that anything can be our reality.

Sometimes I think to myself, “what if Ethan is nonverbal?”

And I know it sounds ridiculous, I know. He is only 2.5yrs old, his speech is naturally delayed because of Ds and there might be other underlying issues. I can’t predict what he will or will not be as an adult or as a person in general. I feel in my heart that Ethan will talk, but at a later time, just not today or tomorrow. And I know it is “typical” for kids that are usually walking earlier than other kids with Ds, they might be lagging behind in speech  and those who arent walking have better speech.. I know, I really do know.

But at those brief moments when that thought crosses my mind, it momentarily brings me down.

Every day I tell Ethan, “Say {insert word} ” to try to get him to repeat a word back to me. I’ll gently grab his jaw and move his jaw for him.

Lately whenever I tell him to repeat a word he’ll grab his jaw and move his mouth for me… or he’ll just move his lips but NOTHING comes out. NOTHING. Not even a squeal. I see the desperation in his eyes, with a slight hint of disappointment. Right after he does that he runs off as if trying to hide the fact that he can’t do what I asked him to do. OR he’ll throw himself at me and starts to wrestle as if to change the topic. I’ll scope him up and kiss those tiny adorable lips, and I tell him it’s ok.

It’s ok Ethan. I’ll wait for you.

I cant say it doesn’t break my heart, because it does. Momentarily.

He might not be talking yet, but he is still an amazing little guy full of many things I wish I could be. How blessed is he, that he will never know some of the pains I know. My sweet sweet child.

While Ds can momentarily bring me down, there are things that are amazingly beautiful that have come out of it and my love and joy for Ethan is infinite.

-erika

The Tales of a Toddler - From Crib to Toddler Bed

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 We’ve been talking about converting Ethan’s bed into a toddler bed for a while, but of course we just like to talk a lot and never actually do stuff until like years later… finally this weekend we converted his crib to a big boy bed!

He took his first nap in it on Sunday. We barricaded him in the room with a safety gate so he wouldn’t run out of his bedroom. It took him about 30-45 minutes to finally fall asleep, between getting up and crying at the gate and going back to lay down, he was out for good and napped a good two hours. It seemed too easy and too good to be true. 

 And it was. Bed time was horrible!!

It didn’t help that he had taken a late nap and wasn’t too sleepy by 8pm. So he screamed at the gate off and on for about 2hrs. Finally he fell asleep on the floor!

Throughout the night I had to check on him to make sure he wasn’t on the floor, and I only found him on the floor once, sound asleep at about 3am. He was extra fidgety in bed and I could hear him all night long just kicking in his bed.

As bad as it was, it wasn’t nearly as bad as it could have been and the next night would be better.

 

NOT.

It was worse.

 

He cried more but at least he stayed in his bed most of the time.

But it was - ALL. NIGHT. LONG.

Apparently everyone else slept through it because the girls and the hubby said he did so much better and that he hardly cried… umm, ok were they sleeping in the same house as I was. The kid whined and moaned and cried all night long. At one point he started to cry really loud and I was determined to let him cry it out, I was way too comfy under my blankets and worn out but daddy went to the rescue and brought him to the bed with us. That seems to be the only thing Daddy remembers. He eventually put Ethan back in his bed and woke up whimpering not long after that. Mommy went to the rescue this time and I caressed his little face, within minutes he was out again and he was mainly out for the remainder of the night.

Part of me considered to convert his bed back to a crib, YES, shamelessly that thought crossed my  mind.  Sleep deprivation can cause you to do silly stuff, like giving up. But I didn’t .

Now some of you are probably like “what is wrong with this woman? Why does she insist on her baby sleeping in a toddler bed, why doesn’t she convert it back to a crib or let him sleep with her..?”

 

-Well he cant sleep in his crib forever. My other kids were out of their cribs by this age. No need to baby Ethan a little longer just because he has Down syndrome.  I want him to learn and be independent and be able to fall asleep on his own. Like the big boy that he is.

-And no way am I going to let him sleep with us. Yeah sometimes we let him snuggle inbetween us at night until he falls asleep, but I learned my lesson with my first born and breaking her out of that habit has been one of the worst things I have ever experienced. She cried bloody murder all night long, Lord did she cry. At that time we were living with my inlaws and they even broke the door down to get in the room to “rescue” Gabby… - true story. Ever since then I vowed to never get my kids in the habit of sleeping with us. Andrea was so easy to transition from crib to bed.. to her own room. She is a trooper, she can sleep with no lights on and the door closed and sleep till the cows come home. Gabby on the other hand, still needs a night light and just recently started to close her door.

Those have been my experiences… AND I like having the bed for just me and the hubby. I think it’s healthy for a marriage to be able to spend some cuddle time with just you and your spouse in bed. Without a kid kicking you in the face.

(I am not bashing anyone that decides to co-sleep with their children.. it just didn’t work for us, that’s all.)

LAST night, I was for sure it was going to be another awful night.

It actually turned out to be much better. A whole lot less  crying and if he did cry he would do so from his bed instead of at the gate, although he would go and just stand to see if he could see anyone. Around 9pm I found him snoring and heavily asleep on the floor by the gate. 

But it was a better night.

THANKFULLY.

Proof that this kid is still wired even on little sleep, pictures from Tuesday morning at school:

Climbs into someone's cubby

 Runs away from me:

Down the slide

WHAT are you doing Ethan???

 Oh, he was just KICKING his teacher...

HAHAlarious, Ethan thinks it is

Tries to run over one of the teacher’s assistants…

 

And this was all in about 10 minutes, I don’t have much time to spare in the mornings sinceI have to rush out of there and head to work. He runs on some sort of magical toddler crack.

LAST night, just because he is a silly boy!

wearing daddy's work boots

He makes my heart so happy. My little guy! 

-erika