when being archie's sister isn't easy

Monday, December 1, 2014

I have written before about Ace's anxiety and her worrying about Archie. She worries about him so much and she has very much taken on the role of his protector. I walk a very fine line every day between wanting to praise her for always sticking up for and watching out for him, but also trying to avoid her taking on adult roles or stress that a six year old should not have to deal with.

Last year after school, I picked them both up in the carpool line every day. They would sit together and wait for me. Except for on some days if Archie was still working on something, or if he was having behavior issues, he wouldn't come out as early. And I knew as soon as I saw Ace's face walking towards my car if it had been one of those occasions. She would come out with tears streaming down her face, sobbing. Couldn't catch her breath. 

The first time it happened I was all, "what in the world is going on?" It was like slow motion as she walked to my car practically hyperventilating. Every bad thing that could have possibly happened ran through my mind. Then a teacher helped her in, and explained to me that Archie hadn't made it to the carpool waiting area yet, and she was upset and scared. Talk about a mom heartbreak.

We waited a minute and then Archie was shuffled to our car by his aide. He hopped in and immediately asked, "why Ace cry?" She couldn't talk, but leaned over and wrapped her arms around him and laid her head on his shoulder. It was as if she thought she would never see him again and was overcome with relief when she finally did. She was doing the whole gasping for air cry, so I pulled the car over and climbed in the back with them. Ace and I sobbed. Archie was beyond confused. Begging us to "no more cry, please!"

That happened on and off for the rest of the year. And no matter how many times I told Ace to please not worry, she reacted the exact same way every time it happened.

She used to regularly express her fears of Archie having to go back to Bulgaria. She would cry and tell me she didn't want him to have to go back. She was always needing me to reassure her that he would indeed be with us forever. Every once in a while if she hears something or sees something that makes her mind go there, she will ask me to promise her that he will never have to go back.

Sometimes being Archie's sister is tough. I think siblings of kids with special needs are some of the most amazing humans there are. It is a whole different world. So much of who she is has been shaped by being Archie's sister.

Of course, I want Ace to be a kid. And to not have to worry about her brother every second. And we are getting there as they get older. Slowly but surely. It involves a lot of talking, reminding, and reassuring.  But she will always protect him and have his back. And that is okay with me.

Lots of Love!

why i like to give my son opportunities for failure

Thursday, September 25, 2014

Last week I wrote a post in which I talked a little bit about how I like to give Archie (my ten year old with Down syndrome who we adopted from Bulgaria at age seven) opportunities to fail. I got several responses from people who were concerned with my love for a good failure. Some insinuated that was cruel and unnecessary. So I thought I would go into a little more detail about what I mean.

One commenter asked, "You 'love' giving him opportunities to fail? Doesn't life do that?" Of course, life gives every single person in the world chances to make poor choices. That's not the point. Down syndrome or not, life gives us all plenty of chances for failure daily. As Archie's mother, it is my responsibility to give him opportunities for small failures. The thing is, if he isn't allowed minor failures today, then there is a much greater chance of him making catastrophic mistakes later in life. So yes, when I see an opportunity for him to potentially make a bad decision (that won't be harmful to himself or anyone else), I jump on it, step back, and let him learn.

His first Christmas home, we were walking through Urban Outfitters and he came across a lovely display of shiny, very breakable ornaments. His eyes lit up and he walked up to the ornaments and stuck his chubby little hand out to grab one. I KNEW what was about to happen. If I wanted to take the easy, less stressful way out, I would have grabbed that ornament out of his hand and told him not to touch them. But I just watched him dangle it in front of his eyes. His fingers separated and it was like slow motion watching that thing fall to the concrete floor and break.

To be clear, this was not Archie's first time in a store. And he had been told many times before not to touch things in stores, and especially not to drop things on the ground. HE KNEW. Would it have been fair for me to let him do that if I thought he didn't know any better? No. But, regardless of how helpless that boy can make someone think he is....he knew exactly what he was doing.

Luckily, the ornament did not smash into a bunch of pieces and I was able to pick up the few chunks and we went and stood in line to pay for it. I was also fortunate that my mom and sister were there with us, so I was able to whisk Archie home for a time out and leave Ace with them. A little while later Archie and I went back up to that store. He walked in with his hands behind his back and kept them there as we slowly strolled past the ornaments. And to this day, he remembers that incident and does not grab and break things in stores.

In my last post, I told a story about Archie losing cake privileges at a birthday party for attempting to blow out the kid's candles. And another commenter asked if I should have given Archie some sort of verbal cue when he was faced with a situation in which another mom was trying to get him cake. No! Most definitely not. Again, Archie knew what to do in that moment. Yes, he looked at me with a "is this a test?" face, and I could have absolutely said, "no, Archie, remember you aren't allowed any cake today." Of course I could do that. That would be EASY. But here's the thing- our goal for Archie is independence. And I am not going to be there holding his hand throughout every step of his life to say, "No, Archie, remember, we don't (fill in the blank)." He has got to learn to control his impulsiveness and make good decisions without me there to remind him.

This video shows one of my most proud mama moments. Ace and Archie had a choir performance at church. During rehearsal, Archie could not help himself from messing with the bright lights shining up from the floor. He kept reaching down and grabbing them, and earned himself several timeouts in the pew with me. I was certain come show time, those lights would catch his eye and he would be right down there on the floor with no concern of what was going on around him. But a miracle happened. Around 1:15 in the video, you will see his eyes find the lights. Then he grabs Ace's shoulder as if to say, "don't let me do it, sis." Then he signs "good boy" as a reminder to himself. He wants so badly to jump down and mess with those lights but he doesn't. He is fixated on them for the remainder of the performance, but he controlled himself. And he was so proud. And his dad and I were SO proud.

If I wanted to eliminate stress, and ensure that Archie could not screw up during the actual performance in front of a packed chapel, I could have had his teacher move him away from the lights. But then he wouldn't have had the opportunity for that great SUCCESS. And that smile and laughter in the end is him being so excited that he did the right thing. That is a major win.

So when I say I love to give Archie opportunities for failure, it is not because I am being mean or cruel. It is because I love him and I owe him that. I owe him the greatest chance at independence. I owe it to him not to take the easy way out on things, but to go through the struggles, and fights, and failures with him so that he can learn.

Lots of Love!

no, actually, it's not okay for my son to lick you

Tuesday, September 9, 2014

Over the last three years I have been really trying to learn and figure out how to properly navigate this world of having a child with Down syndrome. I am a major work in progress as a mom to all three of my children, not just Archie, but he obviously adds some unique aspects to motherhood. The one part I am still trying to figure out how to handle with tact, grace, and patience is other people's reactions to my son. It is such a huge spectrum.

One that I encounter often is the "Archie should get away with things and get special treatment because he has Down syndrome" philosophy. The idea that since he has a "disability", all the rules don't apply to him. This thought process is problematic on so many levels and will only hold Archie back from being an independent person with socially acceptable behaviors.

Recently we were at a birthday party and as it got to be time for cake, Archie insisted on standing right next to the birthday boy. Here's the thing: Archie has an obsession with blowing out candles. It's one of the most difficult things for him to control. His impulsivity kicks into high gear and most times he just loses it. So as he begged me to stand next to the birthday boy, I explained to him very clearly, "you DO NOT blow out the candles. If you blow out the candles, you will not get any cake." He knew the drill. He excitedly exclaimed, "yes, mommy, I know. I won't!" And I know that he wanted that to be true. It was a really long shot, but I took a couple steps back and was prepared to give him the opportunity for a huge moment of success, or a major failure. And as the lights went out, and the cake approached, with those bright flickering candles, I saw the wheels in his head begin to spin out of control. He sang "Happy Birthday" in his loudest Archie voice, and before the final "happy birthday to you" could get out, he lunged forward and blew with all of his might before the kid even had a chance to make a wish. (Fortunately his aim is pitiful so not too much damage was done.)

I quickly escorted him to the other side of the room and calmly explained that he would not be getting a piece of that delicious chocolate cake. (One of his favorite things in the world). I wasn't mad at him. I wasn't upset that he failed. In fact, I was quite happy. I love giving him opportunities to fail and I give them to him often. Those failures, and the consequences that follow, are exactly how he learns. He cried and begged and threw a fit. People looked on awkwardly. One mom in particular stood close by and observed. After I was finished talking to, and hugging on Archie, the mom looked down at him and quietly asked him, "would you like a piece of cake?" I was shocked. So was Archie. He looked at me like "is this a test?" I looked at him with wide eyes like "yes it is, do the right thing..." Then he looked at her and through sniffles and tears said, "yes, please." (FAIL AGAIN!) She reached her hand out to him to take him to go get a piece and he started to move towards her. In my head I was all, "what the??" But I politely said to this mother who I had never seen before in my life, "actually Archie here was told that he wouldn't be allowed any cake if he tried to blow out the candles and unfortunately, he did. So we will have to skip the cake this time." She made a frowny face and gave an audible "awwwww". Seriously, lady?

The thing is, I can say with great certainty that if Archie had been a typical child, she would not have even looked twice. In fact she may have even thought, "too bad, punk." But because Archie has Down syndrome, in her mind he needed to be let off the hook. Um, no.

His Down syndrome is a major part of who he is, but it's not a golden ticket for him to go around doing whatever the heck he feels in the moment.

Here are some examples of things that Down syndrome does not give my son an excuse to do:
Spank your butt
Grab your boobs
Lick you
Pinch you
Blow out someone else's birthday candles
Eat food off of someone else's plate
Drink the rest of someone else's juice box
Drop things on the ground to see if they will break
Push your kid down
Cut in line

The problem is, when any of the above mentioned incidents occur, and I correct Archie, most people's reaction is, "Oh it's okay....no problem....he's fine...." Actually no. It's NOT okay for my son to lick you. It IS a problem if he spanks your butt. And it's NOT fine for him to cut in the line just because he's got an extra chromosome.

I completely understand these reactions from people. They mean well, and are really just trying to make me comfortable and make sure I know that they aren't bothered by Archie's antics. And while I appreciate that (and I really do), allowing him to act like anything less than the ten year old boy that he is, is not doing him any favors.

Lots of Love!

ace and archie today: a new video

Wednesday, August 27, 2014

For World Down Syndrome Day in 2011, we made a video of Ace talking about her brother, his adoption, and Down syndrome. I had no idea that the video would get the attention that it did. And I have been so thankful for all of the responses and emails I have gotten from parents who have been encouraged by it. Parents from all over the world who have just received a Down syndrome diagnosis and say that seeing our video gave them so much hope and joy in a difficult time. Those messages make all of the hateful comments from the trolls more than worth it.

(If you haven't seen that video, here it is:)

Recently, the video started circulating again...and since it is so old, we thought we would make a new video to show Ace and Archie today. Archie did not have a lot of language and his speech was very unclear back then. It's a whole different story today. He has lots of words. All day long. The words don't actually ever stop. Whether I want them to or not. 

So without further adieu, Ace and Archie today:

(My friend Jenny and I have launched a new blog where I will be doing most of my posting- check it out at www.momsyndrome.com)

Lots of Love!

radko james

Monday, June 2, 2014

Oh hey! It has been a while. We have had quite a bit going on around here with the addition of our new little guy! Wasn't sure when I would find time to write this post. Thanks to "anonymous" for the comment that nudged me back here.

So Radko James Eicher arrived on March 8 at....well, shoot....at sometime in the afternoon. (My brain still doesn't allow me to remember details)

Since he had given me such a rough pregnancy, I was very pleased with him when he made the delivery as easy as could be. He weighed just under 8 pounds. They flopped his little body on my chest and I fell madly in love. He was perfect.

So his name: Radko. As you may know, we were having a hard time deciding on a name. Joey wasn't loving ANY of my ideas. Yet he had no ideas of his own. None whatsoever. (That's so annoying. I mean, if you hate all of my ideas at least throw some of your own out there!) Thanks to everyone who did offer up suggestions-- we had fun looking through all of the names and were so thankful for yalls' help! 

One night I thought, "hmmm, I wonder if there are any cool Bulgarian names that we both might like." (With Archie being from Bulgaria, and Bulgaria being such a huge part of our family, I thought that would be really special.) So I made a list of ten names originating from Bulgaria that I liked. I knew which one was my favorite right away. I gave the list to Joey and asked him to look over it and pick his favorite one. He finally decided on his favorite and I told him that we would say ours at the same time. "So I counted 1, 2, 3...." and we both said "Radko!" We smiled at each other, put the list down, and that was that. Radko he would be. His name means "happy, care, and joy".  And James is my dad's first name. And my dad just happens to be an amazing man and father so we went with that. 
It's one of those names that takes some getting used to, but we LOVE it. And it is so him. Of course he has several nicknames- "Rad", "Koko", "Kokonut". But Archie prefers to call him by his full name. Every single morning he asks me, "Mom, where's Yako Jame?" (He's usually laying right next to me or in my arms...Archie just likes saying his name). Same thing when I drop him off at school. He always has to stand outside the car and yell, "bye, Yako Jame. Luh you!"

Ace and Archie have both really stepped up and been such big little helpers. I knew for sure that Ace was going to be such a little mama. But I wasn't exactly sure how Archie was going to handle it all. Ace was carrying him around the house within days home. She is a natural. 

Archie mostly just observed for a while. And I had to keep reminding him to be more careful with his floppy body, because we now have a small baby in the house. He's not the most observant child, and there have been several times where he has just flopped himself on the bed or couch right on top of Radko. And every time he's shocked, like, "Oh yeah, totally forgot this kid lives here now." And he quickly says, "Oh, sorry, Yako Jame! I didn't mean to." Archie has AMAZED me these last couple of months. He is such a big help. He has some intuition that I didn't see coming. 

The other day, I put Radko in his swing while he was asleep and went to hop in a quick (and ridiculously needed) shower. Of course, the second I got in I heard him start screaming. I turned off the water and was heading that way when it got quiet. I thought, hmmm I guess he fell back asleep. So I continued with my shower, taking my sweet time, listening for his cries as my sign to get out. It was still quiet when I finally got out. I walked into the den and found this:

Archie had gone all on his own into the kitchen and found a bottle that Radko hadn't quite finished. And was feeding him perfectly. He had one hand on his little chest and was gently rubbing it. And he had been doing that for a while. I never told them where the bottle was or to give it to him if he started crying. Nothing. He just on his own went and took care of his baby brother. My heart completely melted in that moment. 

We are starting to get into the swing of things. My bigs' behavior has been better than ever lately which is such a huge help. Because at one point, between Ace's whining and Archie's defiance I had no idea how I was gonna make it through a day. But both have been behaving so well lately, and it makes life so nice. I told Ace the other day, "I am SO proud of your behavior these days." To which she replied, "I know, mom, I have never even had behavior like this before." 

Good times. 
Lots of Love!

it's a love story (baby, just say 'yes')

Wednesday, January 8, 2014

Fourteen years ago today, Joey and I went on our first real date. We were fifteen years old. I was a sophomore, he was a freshman.

We had been hanging out the entire Fall semester, and he had become one of my very best friends. However, our friendship revolved mostly around him telling me which sophomore girl he thought was "hot" and me trying to put in a good word for him with said girl. 

The whole thing got old quickly, and one day I thought to myself, "this kid is such a cocky little punk." Soon after that realization,  a couple of my friends and I started the "We Hate Joey" club. I was president, and we sported the letters "WHJ" written in Magic Marker on our hands. 

This was definitely one of those "little girl throws sand on little boy because she likes him" moments. I didn't hate Joey. I far from hated him. I was secretly head-over-heels in love with him. But I was not ever going to let anyone know that...especially him. 

After the devastating fallout of the WHJ club, Joey got back into my good graces, and our friendship really started to develop. We were together every day, and when we weren't together we were talking on the phone. But of course when my friends asked, I denied any sort of feelings for him. "Are you kidding me? Ewww, no!" Was my typical response.

One of my very best friends was a senior, and she gave me a ticket to the Senior Girl's formal. It was a HUGE deal to go to Senior Girls as a sophomore. I was pretty excited to say the least. On the phone one night with Joey, he threw me a curveball and said, "so I heard you haven't asked anyone to Senior Girls yet....I will go with you." (Did I mention he was a cocky and ballsy little freshman?) I did NOT want to take him. How humiliating, taking a FRESHMAN?! But in a moment of weakness, I said, "sure, I guess that would work." (In my defense, the boy was incredibly good looking. Girls got all googly eyed just being near him. I tried so hard to pretend I wasn't one of those girls. But I so was.)

So the night of the dance came around. His entire family came to my house to take pictures. It was totally awkward. And his mom drove us, which was obviously super cool and romantic. I can remember the way he did his hair. He had cut his signature shag, and was now sporting some sort of gelled do that he clearly didn't know how to work just yet.

We ended up having a great time and I was so in love. I didn't expect that the feeling was mutual though. He was this guy that girls dreamed of being with. And I was a very simple girl. I felt certain that his interest in me was purely platonic.

But the next week, in Mrs. Sansom's fifth period geometry class, it all changed. He sat a few seats behind me in the classroom. He got up one time while we were doing independent work, and as he walked by my desk to go "ask Mrs. Sansom a question", he set a note and an unwrapped James Avery box beside my hand. I read the note first. It said things like, "you are the girl of my dreams", "you are my soulmate", "I want to spend my whole life with you." I opened up the box and dumped out the little grey pouch to find a tiny, silver James Avery ring. A little heart with a flower on each side. My heart melted, but of course I couldn't let him know that. When I looked back at him, he put his pointer finger to his lips to tell me to, "shhhh". As in "don't tell anyone, no one can know I'm not exactly the bad ass that I seem to be."

I played hard to get for a couple of days, but he didn't let up. So I finally gave in. {You're welcome, sweetheart}. And we have been together every single day since.

We were together every waking minute of every day. We passed notes all day long at school. And I saved every single one. I made a big collage out of some of my favorite parts of our notes and gave it to him for his birthday one year. This one is my all-time favorite (from me to him):

{"Oh yeah, I'm not going to be able to pick you up from soccer because there is a really good Sally Jesse Raphael coming on at 4. So do you think you could get a ride to my house?"}

Happy fourteen years, my amazing husband! I cannot imagine doing life without you.

Lots of Love!