AJ, Ally, Bowen, Brady, Cam, Cate, Deafness, Dessert, FPD, FPM, FullPlateBupa, Gigi, Isabel, Jax, Juliana, Megafamily, Sofia, Tess

Disney 2018: All the things I want to remember.

Hi Kids!  It’s mom here.  I’m writing to you at the tail end of our Disney 2018 adventure.  We haven’t been here since January of 2017.  We were supposed to come in January of 2018, but your sister’s impending arrival put a little crimp in those plans, so here we are, ten months later.  Isabel is with us, and we all agree the delay was so worth it.

I wanted to commit to memory some things about 2018’s trip.  Sometimes, years after we take these trips, when we’re back in the most magical place on earth, and your favorite place to be, I get flashes of memories and I think ‘I should write that down before I forget!’  So, here I sit, on the patio of our Grand Villa at Saratoga Springs, writing it down before I forget.

First and foremost, I want to remember what it felt like for all of us to be together.  This is Ally’s Junior year of high school.  It is a little bit of a question mark how long she will be able to come with us.  Although, she insists it is forever.  I want to remember that, because forever is a hard promise to keep.  I want to remember what this little girl looked like when she met her beloved Mickey Mouse.  This was her first visit, and it didn’t disappoint.  She RAN through the parks with reckless abandon, searching for that mouse.  We finally found him at a character breakfast.  A $900 character breakfast that Disney paid for because of a mistake they made with our reservation.  Let’s remember that too, not because of the mistake, that made me cry, because it was a doozy, but because sometimes mistakes are huge blessings in disguise.  

I also want to remember this face.  Gigi finally had the language to understand ALL of what was happening around her.  She marveled at the interpreted shows we saw.  Thank you Disney, for providing ASL interpreters, it means the world to this girl.  She has named all the characters, this one is ‘Carrot Nose.’  She was THRILLED to meet him.  She knows he is friends with ‘Princesses, Frozen’ and I interpreted as she asked him all about them, in ASL.  ‘Princesses, Frozen, where? You are friends! Tell them, COME!’  Carrot Nose, couldn’t make them appear, but she was cool with that too.  Hugs and onto the next thing!  She has grown so much in her time in our family.  What once would have caused a complete meltdown is now explained to her and she simply moves on.  Thank God for language.  

I want to remember how the Christmas decorations were just going up as we got here for this trip, how we’ve never seen that before, and how excited all of you were.  They appeared overnight and you all declared it ‘magic.’  I want to commit to memory how you all believe, so wholeheartedly, in magic.  

I want to remember that this was the year that Cate posed for photos with a sass that only she could pull off, and only at this moment in time.  I took about 1000 pictures of you, Cate, because of this moment in time.

I want to remember that this year, at the age of 8, was the year that Bowen FINALLY reached 40 inches tall and got to ride a rollercoaster.  I want to remember what that did for his self-confidence, and how he declared himself no longer little.  He is now ‘a middle’ in our family.

I want to remember our bigs.  I want to remember how Ally spent all day wrangling strollers, without ever being asked, she just did.I want to remember how Cam, Brady and AJ set down their phones, chose not to venture off on their own when offered, and spent all day in the Magic Kingdom riding all the little kid rides with their younger siblings, because they believe in magic too, just a different variety.

Kids, I want you to remember me at this moment too.  Because, the days are long, but the years go by so very fast.  I want you to remember how much fun this was for me too, even when I had to yell “WALK THIS DIRECTION!” in my drill sergeant voice to get us to the next ride.

I want you to remember that you all are my joy, my magic.  All 12 of you.
I also want you to remember that I can whip a tea cup better than ANY of you.–FullPlateMom, who got her teacup whipping ability from her dad, and who plans to keep passing that on to future generations.

Deafness, Gigi, Isabel

Showing Me The Signs

Happy National ASL Day!  To learn a little more about why exactly today was chosen to be National ASL Day, check out this site.  Be sure to watch the video on the first page.  It isn’t subtitled, but the transcript is below.  The signing is wonderful, and I didn’t know the explanation for why today was chosen.

Two years ago, I wrote a post about the resources we were using to learn ASL.  We are still working os hard to learn.  I am proud to say though, that two years, later, Gigi has become our teacher.  I was so worried about the day she would surpass my abilities.  That day has come and gone, and we are living through it.  I am working hard to keep up with her, but she is also teaching me new things daily.  She is so very culturally Deaf.

Gigi has her own Deaf mentor.  She comes every Friday night to hang with Gigi, and every Monday morning to play with Isabel.  This gives the girls individual time to be with someone whose form of communication is their form of communication.  They thrive on it.  Last week, Isa and her Deaf Mentor spent the entire hour doing puzzles.  The Deaf Mentor, who has no access to sound, just like Isa, thinks just the way Isa does, in a completely visual way.  It is amazing for me, as a hearing person to watch.  She could anticipate what Isa was trying to sign so much faster than I could.  She understands how her mind works.

I used to think I would be so bothered by this, by someone else understanding my daughter better than I did.  I am not bothered by it at all.  Instead, I am so grateful.  Without this woman, who thinks the way my baby does, her world would be that much more isolated.  Instead, I am so grateful.  I am so grateful for all the Deaf people who have stepped out to help my girls.

I am so grateful for the language that allows me to communicate with my daughters.

–FullPlateMom, who is happy to show you the signs she knows.

Deafness, Gigi

An Intro To Sound

We turned Gigi’s Cochlear Implant on yesterday. She got her first intro to sound, because, yes, she CAN hear. All the electrodes in the implant are turned on. We weren’t sure she would tolerate that at first. She handled it like a champ though.

I did take a video. I showed it to Joe and one other mom of a child who was late implanted and adopted from Gigi’s homeland.   Gigi’s reaction was exactly what we all expected. They began to “map” the implant and she looked around, giving all of us some side eye, as if to say “What in the WORLD?!?” The Audiologist began to tinker with the programming and as soon as the mic went on she, literally, dove under the table to hide.

Why wouldn’t you? Weird stuff is happening inside your head. I would dive under the table too.

We had read so many books about this, and I had showed her SO many activation videos that when I crawled under the table with her and signed “You hear?” She was able to look up at me and kind of process it as “Oh, that’s what that was?”

She moved back up to her chair and promptly informed the Audiologist “I hear, right here” and pointed to her left ear. She did perfect. She left the processor on and played happily with her interpreter while I got the low down on how to charge and care for all the thousands of dollars worth of equipment they were about to hand me.

Gigi wore her processor all evening. She handed it back to me at bedtime, the same way she does with her hearing aids. At breakfast we put it back on and went for our first post-activation session at Hearing Clinic.

I decided to be VERY clear about what I want from these sessions, which, in reality, is all about what Gigi wants. I want Gigi to run the show. We’ll play games surrounding sound and speech, but if she decides she’s done, than we’re done. These have to be fun.

This is a change from where we were before. In Hearing Clinic sessions prior to this we pushed Gigi, because the sessions surrounded signing, and sometimes, communication is work. Speaking is extra, like learning a foreign language. If she wants to do it, that’s great, if not, we need to stop.

Right now, she is like a newborn to the world of sound and spoken language, and her processor is set LOW, so how much she hears is a real question mark. But, she liked the games we played. While we have been told that it may take a year of these sessions for her to say a word, Gigi is defying expectations.

As we played a game with the rising sun and moon, creating day and night, I said ‘Uhhh-pppp. Uhhh-pppp” right next to her as I raised the moon into the sky. She looked at my mouth and said “Uhhhh—ppp” right back.

Up, up, up, Gigi, rising high against all expectations.

She played a game where I stood outside the door and ‘knocked’, then she would ‘listen’ and then answer. She didn’t find this frightening at all. She found it super fun. Later, we played it at home with Daddy.

During our session, she would tell us she needed breaks. She would put her head down, or she would sign to us “mouth all done.” This meant she was over it. We absolutely respected that and we’d move on to something of her choosing. We’d play with her fish, or we’d draw, until she was ready to play again.

She has had her processor off for about two hours now while she took a nap. We saw this sleepy behavior when she first got her hearing aids. This is a ton of work for her brain. It needs breaks. She is now watching TV, mindlessly, and in silence. After dinner we’ll encourage her to put her processor back on. Thus far, she has been totally fine with this if we give her short breaks.

I’m going to hope this keeps up! So far, she is doing AMAZING!!!

Here’s my end note, and I wish we weren’t back to this again.  I have gotten many, many comments and emails from people who disagree with our choice for Gigi, especially in light of her bleeding disorder. We did risk her life to re-implant her. I am done addressing that. I am definitely done apologizing for it.

If you are Deaf, have written me, I have received your messages. I am not “ignoring you because you are Deaf.”  My not answering you has nothing to do with oppression.  I was ignoring you because you are rude.  You have emailed me 16 times now though, so I’m going to answer publicly.

If you have zero support for our Deaf daughter because of a choice I made as her mother, then that is your decision, but you’re tearing down a proud member of your own community. For that reason, your notes aren’t welcome here. I am doing the best I can.   Gigi waited a long time for a family to come for her. You could have been that family.

Instead, we are.

Should you make a different decision for the Deaf child you adopt, I promise not to say a word.

–FullPlateMom, who is over the hate mail, and is determined to focus on the positive.

Deafness, Gigi

The Night Before Activation

Dear Gigi,

It’s the night before the activation of your Cochlear Implant.  This has been a LONG time coming, sweet pea.  A Facebook memory just popped up yesterday reminding me that it was a year ago now when you received your first hearing aids.  A year.  That is not normal.  Some kids have Cochlear Implants placed and activated within three months of arriving in the U.S. through adoption.

I’m glad we took our time to decide if this was right for you.  I’m so sorry that you had to go through so much pain to finally reach this point.

Before tomorrow, there are a couple of things I want to say to you.  I know that you won’t be able to read this for awhile, but this is a great way for me to journal for you for the future.

I want you to know that we aren’t doing this to change you.  We love you just the way you are.  We are going to continue to try to learn as much sign as we can.  We would never expect you to learn to speak just for us.  If you never say a word, we love you to bits still.

We’re doing this to give you more options, and more opportunities for bilingualism.  I want you to be able to read english, and not at just a 2nd grade level.  I want you to read at grade level.  This tool will make that easier.

If it doesn’t work, I will be sad, but only because you went through all of this only to have that be the outcome.  I will never, ever be sad about who you are.

You are my sweet girl, forever and for always, no matter what.  Thank you for letting me be a part of your journey.

–FullPlateMom, who can’t wait to see what tomorrow brings.

Adoption, Deafness, Gigi

Physical & Psychological

Before all the adoption paperwork updates, I think everyone might want a Gigi update.  She is doing so well!  We are out of the woods on any bleeding issues that might have occurred from the reinsertion of her implant.  The plan is to activate it on April 5th.  We are so excited at the new opportunities this might bring for her!  

This week was spent getting our psychological evaluation and our physical exams done.  On Monday, we met with a psychologist who is experienced in writing evaluations the way that Colombia needs them done.  The psychologist we chose lives in another state, so we used the wonders of technology to meet with her.  Our Skype conference took place during the time that the kids were filing in from school.  So, she got to see the ‘real’ us.  Cate wandered in and out showing me beautiful drawings she had made.  The older kids would come to the door randomly and shout ‘Who are you talking to mom?!?’ before they’d realize someone live was actually chatting with me.  Whoops.  But, if you wonder what it’s really like here, well, that’s it.

The purpose of these evaluations with a psychologist isn’t solely to decide if mental illness precludes us from being adoptive parents.  Honestly, the other fifty million forms we filled out would have raised that red flag.  This is a safety check, yes, but we also filled out a 567 personality index that assesses how well we deal with stress.  Yes, 567 questions.  It took me about 45 minutes each day for three days to finish it.  Joe was able to get it done in one day over the course of about 2 hours.  My mind kept wandering and I’m a nervous “test” taker, so I chose to break it into chunks.  We then scanned our answer sheets into the computer and sent them back to the psychologist.  She will now write the report and send it to both our placing agency and to us.

On Wednesday, I had my physical.  I see a Nurse Practitioner that I actually worked with when I was a floor nurse at the children’s hospital.  She took the six pages of documentation that is required from her in stride.  There is a three page form for the home study, another two page form for the Colombian government, and because I have a past surgical history, she will have to write a letter to the Colombian government saying that it in no way affects my ability to be a parent.  All the forms going to the Colombian government have to be notarized.  Luckily, we live in a large city where the medical practices are large and employ a notary within them.  If yours does not, sometimes you’ll meet resistance on this step.  You have a couple of choices.  You can offer to bring a traveling notary with you.  Those do exist, but they will add cost to your process.  Or, you can remind your medical provider that every bank has a notary, free for you, if you have an account there.  This is for an adoption.  They should be willing to do this for you.  If not, you might want to assess if this provider is really in this for you.

I set up all the forms with sticky notes so that Joe could just follow me in 24 hours later and see the same provider.  This isn’t his usual provider, but this always works well to see someone that I’ve already seen so I can guide them through the paperwork.  Since Joe doesn’t have a regular provider, this is possible as well.  This person can then become Joe’s provider and I kill two birds with one stone.  **Before we go all ‘this is what men do, never see the doctor, to be honest, I didn’t have one either.  We’re self-employed, and largely, healthy people.  We switch insurance policies, for us, as often as we can to get the best deal possible.  This means changing primary care providers.  I have had three in three years.  The only difference is, I know who mine is.  He always has to ask me.  Sigh.**

We both had to have HIV tests, Hepatitis screens and TB tests.  If your provider codes those as ‘screening’, they are considered ‘essential health benefits’ and, because of the ACA, MUST be covered by your insurance.  This applies to you even if you have employer-sponsored insurance.  Yes, this is a blatant plug for the Affordable Care Act.  These will be excluded from your deductible even if your employer, or spouse’s employer, provides your insurance, because federal law currently mandates it.  So, thanks Obama.  And, thank goodness the ACA is here to stay.

We will pick up our notarized paperwork from the doctor next week and then scan copies of it over to our social worker.

Today is our first home study visit.  I will write all about what that entails in the next post.  The state we reside in recently changed its law regarding home studies for adoption.  This means that even though our social worker knows us VERY well, she has to start the home study process from square one.  No ‘update’ for us.  Such is life in adoption.  Laws change.  Costs are added.  This is what we do.

FullPlateMom, who is going to hashtag this one #ThisIsAdoption, just like on Facebook.  You can feel free to follow me there too.

 

Adoption, Deafness, Gigi, Isabel

Paperchasing from the Halls of the Hospital.

I do my best adoption prep from the ICU.  It’s where all of Gigi’s paperwork was done, while Tess had open heart surgery.  This time, Isabel’s paperwork is being done from Gigi’s bedside.  She is spending a couple of days in the ICU as we re-insert her Cochlear Implant and try to make sure her bleeding disorder stays in check afterward.

So far, so good.  There was a small amount of bleeding after surgery, so she’ll go home on a medication to help with that.  We have to be taught how to use that.  We’re waiting for the pharmacist to do that now.  She is getting stir crazy.  We were roaming the halls pretty late last night, with a hot dog, and Nemo on board.

This week in adoption involved filling out reams and reams of paper about Joe and I.  When you want to adopt, you have to have a social worker evaluate your home.  You have what is called a “home study.”  Part of this evaluation means writing autobiographies and parenting resource plans.  You write a self-reflective paper about yourself and then you discuss the child you hope to adopt and all the resources you’ve identified in your community to help your placement be successful.  School resources, medical resources, adoption support resources, they ask about ALL of them.  I’ve written these so many times.  I would love to say that I could just cut and paste my answers from last time, but sadly, the Social Workers are smart to this and the questions change ever so slightly each time we do this.  I understand that, and it is better that way.  These questions should be asked of me each and every time we do this.

46 pages.  Joe and I typed 46 pages of information about ourselves and our resources.  We sent that off mid-week.

Colombia requires that a psychologist evaluates us prior to adopting too.  Neither one of us has a history of mental health diagnoses.  If we did, it wouldn’t be a deal breaker.  But, we’re not established with a mental health professional, and the report Colombia asks for has to be written a very specific way.  We had to find someone who could do this and establish care with them.  We did.  That evaluation will happen on Monday.  Filling out the information she needed from us comprised another nine pages of writing.

55 pages of everything you could ever want to know about Joe and I.

-FullPlateMom, who is really sick of talking about herself.

Deafness, Gigi

Re-implanting, the Guilt that Comes with Another Try.

On Friday I made a call to the surgery scheduler for the Otolaryngology Clinic at our local children’s hospital.  We have made the decision to try to implant Gigi’s left cochlea again.  She called back today.  We are on the schedule for re-insertion of a left-sided cochlear implant on March 16th.

Yes, after everything Gigi went through, after nearly dying, we’re going to try again.

I understand what a controversial decision this is.  I know what it must look like to someone who is on the outside looking in.  I’ve typed this 18 times, some of the first drafts of this post were defensive and so angry, some were apologetic, others were just sad.

I’m all of those things.  I don’t know that I’m making a choice that honors what Gigi will want in the future. Our goal for Gigi has always been bilingual and bicultural, but that is OUR goal for Gigi.  I don’t know what she will want.  All I can do is study the research.  So much research.  Research about literacy.  Research about social isolation.  Research about family relationships between hearing and Deaf siblings.  I have found it and read it all.

I’ve made the best choice I can for a child who is caught between two worlds.

The hearing world has no idea why this is such a controversy.  You’d want to “fix” your kid if something was “wrong” with them wouldn’t you?  The Deaf community wonders why I adopted this child in the first place if I view her as someone who needs fixing?

These are valid questions.

My answer lies somewhere in the middle.  I don’t think of Gigi’s deafness as a disability.  Much like I don’t view Bowen’s Dwarfism as a disability in the broadest sense of the word.  Her deafness, his Dwarfism, neither will have an effect on either child’s life expectancy.  But, the world wasn’t made for either people who can’t hear, or people of short stature.  They struggle so badly.  Both of them have, and will continue to, be viewed as less than.  I am only looking to give them tools to help level the playing field.

A cochlear implant is to Gigi what rods in Bo’s legs are to him.  Bo has curving in his legs.  He will move easier in this world if we, when it is needed, straighten the bending in his legs.  I am not looking to lengthen Bowen’s limbs (yes, that is a thing).  I am merely looking to help him walk easier in the world.

If I can give Gigi some access to sound, this will help her walk easier in the world.

Isn’t that what every mom wants for her baby?

–FullPlateMom, who will delete all negative comments or references to “cultural genocide.”