Friday, May 16, 2014

Misconceptions - Coming Clean

One of the reasons I write this blog is to keep track of our family life. I no longer have time to do scrapbooks or write much down... but for some reason this method works for me. Someday when the kids are grown, we'll be able to look back through this time together and remember.

Another reason why I write is in hope to spread the passion of adoption. With 147, 000, 000 orphans, I hope to show how adoption is really possible, doable and such a blessing.

So I write. Mostly I write the highlights and include my favorite pictures. I write the details for Maggie's cleft issues for other cleft mommas. I document our families activities.

However, I've been holding back quite a bit. About one thing.

Allie.

And it's time to come clean.

After a lot of thought and prayer, I'm feeling strongly that it's time to share the truth.  I've held back for so many reasons.  I want to protect her privacy. I don't want to discourage anyone from adoption. It's hard for me to admit when I'm lost.

But it's also become too big of a secret to hold in anymore.

Allie has been home with us for almost 3 years. We love our girl more than words. Our experience with her joining our family changed us profoundly for the good and we can't imagine her not being a part of us.

She has come so far in so many ways. She's over-the-top smart. She's stunningly beautiful.  She's loving to a fault.

But oh how this girl struggles.  Has always struggled.

From the beginning, she has had a very intense personality.  She struggles greatly to control her emotions. Crying, fits, tantrums.... sometimes all day long. But at first, she was a baby. She was newly adopted. She was overwhelmed and we expected all this.  And then she was a toddler. Toddlers act out.  So we waited. We waited for her to mature, to get a grip on her emotions.

3 years later, it's not gotten better, it has in fact it has gotten worse.  We finally decided not to wait anymore, and are seeking help from a professional.  This counselor works at our international adoption center and her job is to work with kiddos like Allie, who have been adopted and are struggling in some way.  This is where we first heard the term "emotionally delayed".  And that's a very good description for her.

She has no control over her emotions. She is almost 4 years old.  She screams, she fits, she tantrums. Sometimes all day long. She can snap at the drop of a hat. Over simple things like brushing teeth, putting on shoes, eating.  She screams and screams and screams. There is no stopping her once she has started. It's over the top. It's persistent. It's completely and totally exhausting, draining and overwhelming.

She needs to have her way. She needs to have the control. She needs to have the attention all the time. She needs to be the one being held, running the conversation, etc. Which is not possible in a big family.... and also not what's best for her. This affects her behavior big time.  She acts out. She lies. She spits in our face. She hits and kicks. She steals toys and food. She is constantly poking, picking and instigating. And then she is SHOCKED that there are consequences for this behavior. And so she screams some more.  She rarely plays on her own; she spends her days following me and her siblings around either waiting for attention or creating ways to get the attention in any way she can.  These types of behaviors can be normal for kids her age - all kids act out sometimes. We know that. But what is not normal is the FREQUENCY and INTENSITY. It goes way beyond normal.

These behaviors are only with people in authority to her. So to friends, family members, etc. she comes off as positively darling. A charmer.  Jeremy and I have the hard job of setting boundaries and maintaining expectations, so we bear the brunt of her behavior.  Although she is attached to us, loves us, is bonded with us, that attachment comes with the fear that someday we're not going to be there for her anymore.  And that creates a ton of anxiety for her and stress and desperate need for attention.

It would be easier for us to let her have her way, to not put our foot down.  But what kind of person will she become if she grows up believing she should be allowed to act however she wants and always get her way? We don't want that for any of our kids.  We have to show her boundaries and follow through on our expectations, all-the-while constantly reinforcing that we aren't going anywhere, that we love her no matter what.

These issues have always been there for her. Our counselor describes it this way: Kiddos who are adopted have a "hole in their heart", that place for biological family and family history and knowing where you come from. She has no way to fill that hole, no matter how much love and attention we pour into her. It's not our hole to fill.  Some kids cope very well with that hole there; in fact most adopted kiddos we know do not have issues like this.  So far, Maggie seems to be more easy-going.  But for some, it profoundly affects daily life.  Allie is struggling oh so much with that hole in her heart. She doesn't know how to cope with it, handle it, express it.  And so she screams and acts out.  She picks fights, she does anything she can to get attention, even negative attention.

And since Maggie came home, it's gotten worse. Understandably. We expected it. I mean, for a kid who craves all the attention, having a new baby come home, share your room, and have special needs that requires so much care really rocks your world. We get it.

But it's SO SO hard.

The absolute hardest part is that people don't believe us. People just tell us it's her age. She's a girl and girls are more dramatic.  All true. But I've had 3 year olds before. I spent my teenage years babysitting. I've spent my entire adult life either working with or taking care of young children.

This goes way beyond normal.

Another barrier to people understanding is that when they see her, they are struck by her cuteness, her beauty. And when she cries, they think something terrible has happened to her.  They are not able to see what's really going on because of how she looks. They think she can do no wrong.  They think the baby talk she has reverted back to is cute.

Let's get real people.

Cute will only get you so far in life, and it's certainly not what I want to carry her through life.

The other thing that is so hard is that we don't get a break from it. This is my life, my job. It's 24-7.  And it's taking its toll on all of us.  The boys are exhausted from her constantly picking, constantly screaming.  They don't want to be around her.  I can't imagine what Maggie is thinking.  Jeremy and I are drained.  Thankfully, he and I are a great team, but even great teams get tired and need a break, and we don't get that.

The extent of her behavior, her emotions, is not normal. They are absolutely having a significant impact on our daily lives. Nearly every meal results in screaming. Getting ready for the day, playtime, bedtime, going to brother's ball games, going to the grocery... often results in severe disobedience and then screaming a good chunk of the time. It has become very hard for us to simply enjoy life.

When we try to talk to her about it, question her about her choices and give her an opportunity to respond, she often goes into "shut down mode". Her expression completely goes blank and she won't respond. It's like she has checked out.  The counselor says this is because her processing time is much slower and she cannot respond in a normal way in a normal amount of time.

We are trying so hard. We love her so much. But it's really hard to like her right now.

Somehow over the years, I've written in such a way to give people the impression that things are perfect here. That we're this amazing family, that, as someone told me the other day, "we have everything together."

Oh, we so don't.  We are weak. We are tired. We are so, so weary.  There's only so long we can keep up the facade and  I'm done now.

So there it is. She is struggling. We are struggling.  We have put this on the back burner for so long, as we prepared for China, went to China, recovered from China, prepared for surgery, recovered from surgery... and now we're picking up the pieces and trying to make it better.

We are seeking help, but progress is slow going.  We're engaging in daily "play therapy" at home which involves me spending one-on-one time in a certain, scripted way with her every day, with no interruptions.

Um, hello. I have a new baby who screams when she's not being held and 2 boys who need attention as well.  Not easy at all.  We're supposed to go to counseling once a week... which involves time away from work for Jeremy, arranging childcare for everyone else... it's so much.

So we're asking for your support.  We're asking for you to try to understand.

Please do not tell me how cute she is when she is screaming. Please do not tell me it's the age, she's a girl.

Please understand that she was born into unusual circumstances and she is reacting to that in a way that is not healthy for her or for all of us. And she needs help.  We need help.  We don't want this to be our normal forever.  We fear for her. We fear that if this starvation for attention continues, she'll seek out attention in very scary ways as she gets older.

This is real life. We still are PASSIONATE about adoption. In fact, we proceeded with a special needs adoption DESPITE these issues.  We believe everyone can do their part to help kiddos without families. These kids need families who are willing to go in the trenches with them and fight their way out.  I hope our experience demonstrates just how desperately kids need a family to go to bat for them; I hope more families step up to open their homes and hearts to these kids.

We have no regrets, we love our girls. They are OURS, and just as parents would do anything for their biological children, we'll do anything for our adopted children as well.  Despite the struggles, they are such BLESSINGS.  I absolutely believe in my girls and know they are going to be fabulous, amazing women someday.  I hope one day Allie will read this and see that we did all we could to help her.

So we are in survival mode,and have been for a long time.  And to keep it real, we needed to come clean.


Sunday, May 11, 2014

6 Months


Six months ago, Maggie was placed in my arms for the first time.

What a difference. She is our joy!



Thursday, May 8, 2014

Teeth, Ears and.... Eyes? (We Got 2 out of 3)

We can check 3 more appointments off our list for Maggie: dental, ENT & eye doc.  Well sort of.

Here's what we found out.

Dental
Teeth are as good as can be expected at this point.
She will need major dental work over her childhood to position her teeth correctly.
Brushing is crucial for her, as cleft kiddos are more prone to decay.
For now we just keep an eye on her teeth & mouth. Around age 3, we'll start to determine how speech comes into play and if further surgeries are needed to help aid her speech development.
Go back in 6 months.

Hearing/Audiology
Tubes look GREAT!
Hearing test went flawless-no tears and she heard and responded to everything perfectly!!!
Go back in 6 months.

Side note:  This was a huge difference from last attempt a few months ago: The 1st go-around she didn't respond to the sounds in part because she couldn't hear them (we believe she really had significant hearing loss due to the amount of fluid in her ears), and also because she was stuck in that crib alone and didn't KNOW to respond to noises. Heartbreaking.  I actually had tears running down my cheeks during this 2nd hearing test. In the back of our head, tucked away behind our more pressing needs of her surgery, we were worried she had true hearing loss.  To know that she can now hear well was amazing.  She was interactive and responsive and SO DIFFERENT than she was a few months ago.  I was so overjoyed at how far she had come. Yet it was also bittersweet because how simple was it to place tubes in her ears to allow her to hear better and give her the family she deserves so she knows to respond... there are MILLIONS of kids who will never get this and it makes me so sad.

Vision
Appointment failure.  Not because she can't see, but because she didn't cooperate. At all.  She screamed. And screamed. We tried to pry her eyes open and they were rolled back into her head!!  All the while Sam & Allie were manically pushing each other around in the stroller in the tiny exam room and laughing hysterically.

Somehow through all that the eye doc was able to see that she can see well and her eye muscles are working well. But she was not able to see her retina or the back of her eye at all to get a general feel for her eye health.  However, we have no reason to be concerned, so we'll wait.

Go back in 6 months and try again.

Common theme: all is well for now, come back in 6 months.  So far here is our list of appointments for the fall:
2 year checkup
plastic surgeon
dentist
ENT/audiologist
eye doc

Coming up: We're getting close to our 6 month gotcha anniversary and 6 months homecoming anniversary! Our social worker comes tonight to check in and write our 6 month follow-up report, which will be submitted to China.

Maggie also has a follow-up appointment at the adoption clinic in a few weeks, they oversee her care and we'll check in with them to see the big picture, which we think looks pretty good for her right now.

Other than that and our Help Me Grow speech/language visits once or twice a month, appointments should slow down for her for a while. I hope!