In other news.

First of all, let me say: Wow. The response to my last post was overwhelming- in a good way. Of course, putting yourself out there you open yourself up to critism. It was worth the risk to me. You gotta have thick skin in this "business"! Obviously, mine has some holes in it but whose doesn't?  WHY are we afraid to talk about the hard stuff? How can we help each other if we pretend the hard stuff doesnt exist? You should see the responses in my inbox- so many kids/parents are struggling... That doesnt mean they are any less than the kids/parents who aren't at the moment. We ALL need support and encouragement.

The last weeks have been busy.  I mean, busier than normal.
Isn't it funny that seven appointments a week is "normal"? It's all relative. Last week we added a few more on top of that and this week we were hit with stomach virus and sinus infections (both at the same time for me... good times).

Anna Gray had her 2yr well-check :)

She cracked 20 lbs! Right at 21, actually. Still a peanut though. Less than 5th percentile on a typical chart (closer to 30th percentile on the DS chart).

Also, I get that they have a "standard" checklist... but I wish they didn't go thru it so mechanically.

•Does she jump with two feet? No

•Does she feed herself with a spoon and a fork? No

•Does she climb the stairs one foot at a time? No

•Does she kick a ball? No

•Does she say at least 50 words? No

 But you know what she can do?! And I proceeded to list all her new little accomplishments. They were super nice, but come on...

 Anna Gray also had her hearing test at Vanderbilt again. She failed miserably again.

She registered no sounds in her left ear, again. BUT her eardrum isn't moving at all which means it's likely that she has fluid in the way, although they can't see any in her teeny tiny ear canal. So... the plan is tubes and ABR at the same time, since she'll already be sedated. If there is fluid, it could be the reason she can't hear. Or fluid can have absolutely nothing to do with the fact that she can't hear. That being said.... it sure ain't stopping her! She appears to hear well and her speech is actually above average. We'll see :)

 

Also very much worth mentioning, last week Nathan got a new job!

He now has a permanent full-time active duty position on base in his chosen career field :)  AAANDD since that position won't start until July 1st... this week he was promoted in his current positon!

When he told us, Cale said: "So your the boss?"

Nathan: "Just like at home!"

And then we all laughed and laughed and laughed ;)

 

 

 

The hard words, expanded.

I know, I know. It's completely obnoxious to post twice in one day, but my heart is heavy and my tummy is sick leaving me useless on the couch with only enough energy to type and not much else.

Sigh.

Brynn and Cale.
My sweet babies.
I don't even know where to begin.

Our house is struggling. Technically, the two of them are struggling, but we struggle with them and for them. There is SO much going on and I feel certain I can't really put it down appropriately.
It is and has always been tough to find a balance between sharing the hardships, to be their voice or seek advice, and protecting their story. I have shared parts of their story here, yes... but not all of it. It isn't mine to tell. And I thought by keeping some of the details private, I was protecting them. I wasn't. The big picture can't be seen if there are great big holes in it.  ( I still won't shout it from the rooftops but there are areas in their life where it would have been more beneficial for them if we had provided more information. You know?)


School is... not going great. If you know these two, you know that they really are PRECIOUS. They both have happy, helpful hearts. But some other stuff gets in the way sometimes. Academically, they are mostly on track and getting extra help in the areas where they need it. Behaviorally... Oy.

Let me start by saying, it is not a parenting issue.
Not that we are perfect parents by any stretch of the imagination, but I can promise you that bad choices and ugly words are not being taught nor ignored in this house. And really, it's not a behavior issue at all... it's so much more than that. Their worlds are colliding, in a sense.

First, their adoption.
I realize that as adoptions go, coming home at nine weeks is young. But for nine weeks, nine newly born weeks that are critical for bonding and attachment, they didn't have a Mama or Daddy to snuggle with. Their basic needs were being met and they were cared for. But it's just not the same. And not only that, but now they are realizing it. They have known the words (we have always given honest, albeit brief, answers), but now they are beginning to understand what that means. They haven't directly asked WHY yet, but it's coming.

Brynn has always accepted her adoption as part of her life. She has always been curious, asked questions, and talks very openly about her first family. Anna Gray's adoption definitely triggered some feelings of loss. She had me write the most precious letter to her mother and it was clear that she is hurt and happy at the same time. And that's okay. She is also creating big grandiose (untrue) stories about the time she spends with her birthparents.


For a long time, Cale refused to acknowledge it. Any of it. The day I broke my collar bone- my birthday- it's because I was scrambling to get their "very special book" out of the top of the closet. He wanted to take it for Show & Tell. That was only weeks ago and it was the first time he had ever said a word. Since then, he has woken up in tears "looking for his parents and not being able to find them anywhere" and he has drawn pictures of himself with them, holding balloons. He broke my heart last week telling me how sad he was. On the plus side: he acknowledged his adoption, he acknowledged he has feelings about it, AND he verbalized those feelings. That's a BIG deal.

They were young when they came home, but it is traumatic nonetheless. It could be their age, their cognitive growth and ability to understand more, AG's adoption... or a combination of all three. Regardless, it is clear that it is playing a HUUUGE role in their behavior these days.

Race has come up (mostly from Brynn). It is yet another way they feel different (um... because they are, no big reveal there). Read THIS.

We play with friends who were adopted, including black friends who were adopted by a white family. We have reached out to two of their biological siblings and pray we hear back someday. We even had some sweet family friends come get Brynn last week and take her out for "Diva Day" :)

Secondly, their special needs. My kids DO have special needs. Maybe you can't see them when you look at them, but that doesn't make them any less real. From a sensory standpoint, we have made all kinds of modifications. We have weighted blankets. We have chewelry. We have rice bins and calm down jars and velcro under their desk. We have battery operated toothbrushes, schedules, visual reminders, and positive reinforcement.  We can tell a noticeable different with these things in place, but it's not enough.  At this point, Brynn's need for stimulation has surpassed Cale's.

As far as autism goes, Cale is doing really well... until he's not. One day, he will be doing so well that his Dx is being questioned and the next day, he's rocking in a corner with his ears covered. Those days are MUCH fewer and far between. Really far, actually. He still struggles with appropriate boundaries, anxiety, sensory, OCD, etc but hardly noticeable compared to even a year ago. If you didn't know, you wouldn't know really.  Most of his "episodes" are control-related. The meltdowns ensue when he doesn't feel like he has control. That could mean not getting a snack he wants or being asked to try a worksheet again.  I know that sounds "normal", but trust me... his reactions really are not. Even if I'm not describing it well. Everyone is trying to make him angry. No one is being nice to him. He isn't allowed to do/eat/drink anything. He is angry and hostile. He is also charming and kind. And unpredictable.
 He has his yearly appointment with the developmental specialist coming up and we will also meet with the behavioral therapist.

Brynn.... oh my. Go big or go home, and that applies to ADHD too. Just now, she jumped up and down and was swinging her arms in circles while telling me she was going to put on her pajamas. And before she got to the word "pajamas", she forgot was she was telling me and started singing Mary Poppins.
All.the.time.
I think we are starting to get the right people in place to help her be her best. We have a doctor appointment coming up and have decided to try low dose meds. We wrestled with the decision- for years- but we feel like we have done EVERYTHING else. Our fear is that we will lose the essence of who Brynn is. She's a LOT, but she's our Brynn :) And we don't want to change her, we just want her to be able to be the best Brynn she can. And she is so discombobulated right now that she can't. She has cried in frustration over her head "moving too fast". It's sad. I have also cried in frustration. It's hard. It's hard to understand how the same little girl who volunteers to wash dishes and fixes me water when I'm sick, is the same child that lies constantly and has ZERO impulse control.

She is in individual therapy and in group therapy. Soon, hopefully, we will have an IEP with goals that keep her focused. And hopefully, the meds are just one tiny piece of the pie that helps her succeed. I feel like I let her down for a while. I let her fall between the cracks while we saught services for the others. (Thank you to their school guidance counselor who reminded me that you replace the shoes with holes in them first.)

Thirdly, the unknown. There is a piece of the puzzle missing. We're looking. When it comes down to it, these kids have a lot going on. And they just don't fit neatly inside any one box. Each issue seems to exacerbate the others.  Maybe there's a genetic link? Possibly. We will certainly try (again) to rule everything we can out (again.). There may be something else entirely to blame, but I'm not ready to go there yet.

Make no mistake, we love our kids. And it is not ALL hard all the time. There are some wonderful, beautiful moments with these two!!
Last night at dinner, Brynn blessed our food and thanked God for giving her "a Mommy and Daddy who kiss". I thought that was the most precious thing ever.

 

Right this second, Cale is telling baby sister that he is going to teach her how to do a cartwheel when it gets warm outside and that she should never ride her bike without a helmet.

 

 

Also, it needs to be said that I am so grateful other mommas that hang by you. It's hard to fight these battles daily, and the judgement, and the insecurities, and everything that comes with this life. 100 % worth it, but HARD. It does make it easier when you have friends who have walked in your shoes (or in shoes similar to your's!) be there to at least say, "I get it."  And even friends who haven't, offer encouraging words. I want to fight for my kids, I want to be their voice... No, I HAVE to. The last few weeks have been rough. I was feeling defeated and you drug me from the trenches. I appreciate you.

Update: They both had good/better days today! Both got "green dots" (I'm sure it's all relative, but we'll take it!). Both got Wildcat tickets from their bus driver for exceptional behavior. Quite the contrast from yesterday AND Brynn won the kindergarten prize for Mad Scientist :)

Spread the word. Pretty please?



 

 

 

A thesaurus, but .... really.

 

It's sad that this even has to be said, but I hear it EVERY day. Seriously. Out of habit, someone will say it right to me. MOST of the time, I know they don't mean to be malicious. They don't mean to be insensitive or cruel. And MOST of the time, I can gently remind them that it's a hurtful word. MOST of the time, they will realize what they've just said and even feel embarrassed for it. MOST of our family and friends have already made an active effort to stop saying it (and I love you for it!).

I posted "A Word Gone Wrong" earlier in the week.
They're right. The word "retarded" didn't start out as a BAD word and it's still considered clinically appropriately. But now, it stings when you hear it. When someone says it about YOUR child. Even inside the walls of a doctor's office, because outside of those walls... you know people aren't using the word to mean "intellectually disabled" or "cognitively delayed". They mean stupid. Are you saying my child is stupid? Would you really say, "That's so Anna Gray." Is that what you mean?

^ This child?^ The one who understands three languages? The one who uses what she has to do things they said she couldn't do? The one who tricks people into giving her what she wants? She's stupid?

No. She's not. Quite the opposite, actually.

I remember when I was 19 or 20, walking across the parking lot to a Titans game. My dad used the word. It was actually the first time I'd ever heard him say it (and the last). It had just started to really catch on as a slur, he had college-age kids, and he said it. I cried. Like, really cried. Not because I knew I was going to have a daughter with Down Syndrome some day (I didn't!), but because I knew it was hurtful to someone out there. (Although that was NOT his intention- at all.)

It's not just about Anna Gray. It's about not being cruel to anyone. Awareness... to acceptance.

So, please. Stop saying it. Tell other people to stop saying it. Tell them why. Tell them about Anna Gray and how amazing she is. Tell them how much it hurts our family and others like our's to hear/see that word. Tell them them to spread the word to end the word.