Jojo's 1st year: There are some things you need to know.

Thursday, August 28, 2014

Jojo had an amazing year!

We have said time and again that we can't remember a time when he was not a part of our family. He just fits and we are all so in love with him!

Expecting a baby with Down syndrome? 

One of the biggest challenges of having a baby with Down syndrome is working with them to meet their milestones. Things that "typical" babies do naturally don't happen as easily for our babies. We have to work for them. So, for those expecting a baby with Down syndrome, or thinking of adopting, I thought I would share some of Jojo's first year milestones with you.

9 weeks- rolls over
3 months-bringing hands to mid line
4 months-ate first solid food and started sleeping through the night
6 months- started sitting up in a propped position and learned to hold his own bottle
7 months- sitting up without being propped
10 months- started pulling up
10 1/2 month- finally figured out how to crawl!
1 year- army crawling all over the house!

Of course those are just the broad strokes, and every baby is different, but you may notice that he really isn't behind at all! That is because we go to therapy twice a week, and work on his goals at home. Another contributing factor is that he hasn't had any major health problems, which does set many babies back.

Considering adopting a child with special needs domestically?

These are the things "they" don't tell you.

They may not sound like a big deal to some people, but to me they were HUGE so I wanted to share just in case it could help someone else.

I was actually in the process of finishing my foster care licensing when I got chosen to be Jojo's mom. I had only 2 months to get my home study done, lots of paperwork filled out, and lots of money raised! So I really didn't have time to ask a lot of questions. But, if I had been in a position where I was considering adopting a child with special needs from the US, these are the things I would have wanted someone to tell me:

-If you are a foster parent to a child, and that child cannot be re-united with family, you can adopt them. And it is FREE. Free. (this goes for non special needs kids too)

-When you adopt a child with any special need (emotional, behavioral, physical etc) from the US, you qualify for an adoption subsidy from your State. You can learn more about what your state offers here. Let me be clear, this amount of money will not make you rich lol but it is helpful when paying for therapies etc.

-Adopted children who have special needs and many kids who are adopted from foster care get FREE insurance. Like as in I pay nothing for Jojo's health care. Free.

*Disclaimer: this is clearly not an exhaustive list of all the things you should know. I am also NOT suggesting that these things should motivate anyone to pursue adopting a child with special needs. That would be cray. No representation is made that the quality of adoption advice by me is better than the quality of adoption advice from others. Some exclusions may apply. Tax, title and tag not included. 

This I know to be true: Jojo has forever changed us all. He blesses people in ways I would have never imagined. People tell me ALL THE TIME that just seeing pictures of him makes their day. He it truly a blessing to many!!

This kid is one of the best things that has ever happened to me.

If you are considering adoption or just want to have your day made, watch this video. It will shed some light on what "special needs" REALLY means when it comes to adoption! I am proud to have had a part in making it, my kids are in it, and Aidan is the narrator!

Thanks for letting me share,

Project Hopeful: Adoption is Redemption from Lantern Vision on Vimeo.

ace and archie today

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:

Thanks for letting me share,

special needs moms: let's stop throat punching

Tuesday, August 26, 2014

Anyone who has followed me at eicherumba knows that I am an advocate for ending the use of the R-word. If I had it my way, I would never hear a single person use the word to describe a friend who acted like a fool, an annoying homework assignment, or a movie they did not like. Singers like Iggy Azalea wouldn’t put a damper on awesome songs like “Fancy” by throwing a line in there that says, “and my flow retarded.” Really Iggy? I-G-G-WHY? Just unnecessary. If they have to bleep it out on the radio, there is a good reason, and maybe you could just consider using a different word. Did you mean your flow was stupid? slow? I’m confused.

While these things, along with news headlines that completely neglect people first language like, “Down syndrome boy wins homecoming king”, are frustrating and bothersome, I feel like our community of special needs moms (wait, can I even call us that?) has really become so impatient. It is like we have created some zero tolerance policy on an issue where there really needs to be some room for grace.  

It wasn’t all that long ago that I myself used the R-word. I grew up in a generation where we threw it around freely and didn’t think a thing about it. And I was even a kid who worked with Lifeskills students growing up all the way from elementary school on. I LOVED them. I was passionate about people with special needs from a very young age. And there were probably times I walked out of that Lifeskills room after skipping lunch to hang out with my buddies in there, and called one of my “typical” friends retarded for whatever reason, or likely no reason at all. The two things didn’t go together in my mind. When I said the word I wasn’t thinking about my friends with special needs. 

And it really wasn’t until Archie came into my life that I realized the impact of the word. It wasn’t until I looked into my son’s eyes and thought, “holy crap. That’s no bueno.” It became even more of an issue for me when I talked to some of my friends on the Special Olympics team we work with. Young adults with all different types of special needs. I asked some of them one day what it felt like when people used that word. Some of them teared up while telling stories of peers or even adults in their lives using the R-word and the hurt that it caused them. And THAT made me angry. 

All of that is to say- “I AM WITH YOU”. Moms who get heated when you hear these words that cause pain to our children. I get it. And I am right there with you. However, we have got to stop being so darn scary about it. As with most issues, education is key here. Threatening to throat punch every person that says the R-word is just not gonna get the job done. Now, if you encounter some jerk who was actually being hateful in using the word, throat punch away, my friend. But for the most part, when we hear the word, or when someone fails to use people first language, it isn’t because they are being a jackass or trying to hurt our children, it is because they just don’t realize the impact. 

This summer Jenny, the kids and I all went to Austin for a day trip to meet some friends I had been dying to meet for a long time. They have a little girl who has Down syndrome and is amazing. They’re from California, but were going to be visiting friends in Austin, so of course we decided to make the drive from Houston to Austin for the day to go and meet them. One of our new friends, Nate, (friend of the people we went to meet) quickly fell in love with and bonded with Jojo. He held him for hours. They had some awesome connection going on. That night, while still holding Jojo, Nate used the R-word. Jenny called him out. Not in a mean, throat-punching way. But in a “hey hey now, we don’t use that word..” way. He felt awful. His face changed from happy and laughing with Jojo, to sad and embarrassed. I am pretty sure there was even a tear or two. He hugged Jojo tight and rubbed the back of his head as if to tell him, “I’m so sorry, buddy.” 

Jenny handled the moment just right. She didn’t scold or lecture him. She didn’t act appalled or angry or as if she had never used that word before. But I know that it had a major impact. Though we had only known Nate for a matter of hours, we had all formed quick friendships and it was a situation in which we were all comfortable enough with each other to have those conversations. Now, was the goal to make Nate feel awful, of course not. We love Nate. But I am pretty confident that he appreciated Jenny’s reminder, and would rather her have said something as opposed to us standing around looking at each other like, “rut-roh” and him having no idea. 

Of course everyone is different in the ways they handle things that they are passionate about. I get that. But I am just thinking we should come up with some nice ways to educate people that don’t involve immediately writing them off as jerks. And you might find yourself caught in a moment at some point where you hear someone say the word, and really have no idea how to handle it. That’s okay too. 

Here's an idea for when in a situation where you just can't find the words. A plan that I believe to be nothing short of genius:

Save that picture, and when in a situation where you just can’t find the words in the moment, send it in a private message to the offender. And I am pretty confident that it will work well with a male or female perp. 

What it all boils down to is showing some grace. Educating. Raising awareness. But we should do it in a way that doesn’t make people afraid to ask questions or make them feel nervous about speaking around us for fear of saying the wrong thing. Should we be silent? ABSOLUTELY NOT. But there is a difference between speaking out for what you believe in and making a well-meaning person who just doesn’t know feel like a piece of dirt. Let’s be more approachable. More open to questions that might even come off as offensive to us. Those are the moments in which we have the opportunity to open people’s eyes. 

Thank you for letting me share,

In the beginning....the story of Lili and Annie.

Friday, August 22, 2014

Welcome to Mom Syndrome!

eicherumba and mojennymo are merging our blogs in to one, to talk about all things adoption, down syndrome, mom hood, friendship, life, and everything in between. It is going to be epic. 

Ok, so this is the story of how we met and became BFF's......

Before we get started let us just say this:

Lisa is married to this guy:

Jenny is married to this guy:

Now that we are clear ...on with the story!

Lili: When my husband, Joey, and I made the decision to adopt a child with Down syndrome, we knew that our lives would be blessed beyond imagination. One unexpected blessing that our little guy brought us was some amazing friendships. Friendships rooted in deep love and understanding. My very first friend in the Down syndrome/adoption world is Tesney. You can read our story here

If you are too lazy too click on the link (kidding, I probably wouldn’t do it either) then here’s the lowdown:Tesney and her husband were in the process of adopting a little boy from Russia when I found her. Joey and I were in the “we are ready to commit” stage of our process, and Tesney walked me through things. We finally decided to commit to a precious little boy, also in Russia, named Kirill. We were so excited to make him our son, and Tesney was thrilled for us. Fast forward a little bit and things were just not panning out. Instability with Joey’s job and some logistics made it clear to us that we could not bring a child home at that time. So with broken hearts, we let Kirill go. Tesney walked me through the heartache. She was my rock. Not long after that, she and her husband were the ones left broken hearted, when they learned that their little boy was no longer available for adoption. 

They knew that their child was still waiting, so they told their agency that they wanted to proceed. Soon their agency sent them a referral photo of a little blonde headed boy who desperately needed a family.  A little boy named Kirill. Our Kirill. I kid you not, of all the orphans in Russia, they were sent a picture of  Kirill. Tesney called me, told me the news, and there are no words to describe the emotions I felt knowing that he would be theirs. That he would not be left behind. Overjoyed simply doesn’t cut it. 

After a long and hard process, they brought Kirill home. Tesney and I had grand plans of meeting and tried for a long time to make it happen. (We are in Texas, they are in Alabama). Two years later, I got a text from Tesney letting me know that a friend of hers was chosen as the adoptive mom of a soon to be born baby boy with Down syndrome. Low and behold that little boy was being born in Houston. Her friend, Jenny, being a single mom, could use all the support she could get, so Tesney decided to join her on the journey. And we would finally meet. Win-win. 

A few months later, June rolled around, and I got the call from Tesney that the baby was on his way, and soon she would be too. Jenny, her two kids, and mom headed to Houston right away to be there for the birth of baby Jojo. He was born on June 20th. I knew that her crew had to be getting stir crazy being cooped up in a hospital or hotel room all day every day. Plus, adoption comes with enough costs as is, and there was no sense in her spending money on a hotel room when we had beds for everyone.

A few texts and a phone call later, my kids and I were anxiously awaiting the arrival of our house guests. I knew nothing about Jenny, but I trusted Tesney. We were watching out the window as we saw a little rental car creeping by. They appeared to be lost, so I knew it was them. We made our way outside to flag them down and they pulled up at our sidewalk, hopped out of the car, and into our home. 

Annie: Jojo was born on the 20th of June, and by the 24th, it was time for my mom to get back to Birmingham. We rolled up in front of Lisa's house, never having met her in our lives, and unloaded the kids and all our stuff. Emmy (my mom), literally gave us all a quick hug and said "nice to meet you!" to Lisa, and sped off to the airport to catch her flight.

And so there we were. Me and my kids. Her and her kids (husband was out of town). Our kids hit it off right away, and by that evening when Tesney arrived Lisa and I had already become fast friends. More on our first day, the scary robot in her dining room, how I saved her dog's life, and how she broke a gas station can be found on my original post here.

Tesney and her kiddos were able to stay with us for a week, and we had an awesome time! We split our time between visiting Jojo in the hospital, and doing fun summer stuff with all of our kids! Tesney and I had been friends since we were kids, but having someone drive across four States to be with me during that time is something I will never forget!

There is just no way to explain the friendship and bond that Lisa and I formed in the 3ish weeks we were there except to say that God knew what He was doing with this crazy plan!

When you bring your baby home from the hospital, have your first sleep as a family of 4, baby's first bath and so much more with other people, not to mention in their home, you just And that is exactly what happened. Her kids starting calling me Annie (because Archie couldn't get Jenny to come out right). My kids started calling her Lili because we decided "Miss Lisa" sounded too formal.

That was over a year ago and not much has changed since! Distance has been a challenge, but we have been blessed to make trips to Houston and they have made trips to Birmingham. We talk on the phone every day. We love each others kids as if they were our own. 

So, it just made sense to start a new blog together. Our stories overlap so much at this point that we can't really tell them separately we are way funnier and more awesome-er when we do things together.

Mom syndrome will feature posts about all sorts of topics, as well as guest posts {That one time when____} and a weekly dose of "Stuff What the Kids Say". It's gonna be FUN!

Thanks for letting us share,

Tesney & Jenny with Clayton, Aidan and Kirill

Tesney, Jenny and Lisa

Ace, Aidan, Clayton, Ella Mae, Archie and Kirill

Lisa and Kirill