Monday, April 12, 2010

What is Her True Special Need?

When we decided to adopt from China we got into the healthy as young as possible line.  We didn’t even think about going special needs.  In fact, the words “special needs” scared us.  We were logged in on May 30, 2006.  At that time we were told we would have our referral in 9 to 12 months.  As we all know this didn’t happen and we waited and waited.  I started doing some research and talked to Big T about getting in the special needs line.  I especially wanted a heart baby because of all I learned about the heart when my mom was so sick.  Big T?  Well, he wanted nothing to do with a heart baby.  When we got that call, that wonderful call, I called him and told him to get to a computer so he could see his little girl.  After he saw her picture I told him she was a heart baby.  Was he mad?  Yep, just a little but he knew she was his daughter so he got over it pretty quick. 

Once we got home with her we made an appointment with our pediatrician who referred us to Wake Med and a pediatric cardiologist.  (We were under the impression that her heart hadn’t been fixed but when I got to China I found out she had been operated on about a month before we got her.)  So, we go to the pediatric cardiologist and get some tests done.  He was very pleased with China’s work on her heart and told us that she is fine and he didn’t need to see us anymore.  Praise the Lord!!  We were so happy!!


As we went along our merry way I noticed she wasn’t talking.  Yes, she just spent 2 years of her life in an orphanage where they spoke a different language.  But she understood us, would do what we asked her.  What was going on?  She was referred to EI where they started her on speech therapy and occupational therapy.  The OT was for chewing because at 26 months old she didn’t know how to chew.   That is another story for another time.  The EI was happening 2x a week.  Then when she turned 3 she went under the county and started speech therapy with them 2x a week at her pre-school.  I wasn’t happy with her progress so I made an appointment with her old EI speech therapist for another evaluation.  That is when we learned she has verbal apraxia. 


Wait a minute!!  That isn’t her special need!  No one said anything about verbal apraxia!  But there it was, in black and white.  Little T, who will turn 4 next month, can not talk like a normal soon to be 4 year old.  She can’t carry on a conversation, she can’t tell me about her day at school, she can’t tell me if someone was being mean to her.  Since I’m with her all the time this doesn’t bother me but when I’m around another 3 year old that can talk your ears off, my heart just aches for her.   Its so hard for me sometimes when I hear a young child talking and laughing with their mom or dad.  Will she ever be able to do that?  

We didn’t put verbal apraxia as a need that we would “accept” on our little checklist we gave to our agency.  In fact, it wasn’t even ON the checklist!    But here it is, in our lives, as her true special need.


Brandi said...

Our DD was also recently diagnosed with verbal apraxia. I know exactly how you feel. I, too, long for the day when I can hear my baby talk. Right now Kalia doesn't say not one word, and she's 31 months old. She can sign like crazy, but i long to hear her voice.

Just wanted you to know that I totally understand how you feel.

Ms. J said...

Wow. I can't imagine how difficult and frustrating this must be for you - though I am happy to read that you are being aggressive in getting your daughter diagnosed and treated and the therapies she needs. I read up on this last night so I could understand better what the diagnosis is.

As someone who also chose to go special needs, and for a "heart baby," I always reasoned that "hey, at least we know what we are getting into - we don't like surprises." I had read about other international adoptions where a so-called healthy child came home and a problem was found later. So, special needs was comfortable for us.

I don't think there was much way for CCAA to know your daughter would have this condition . . . but nonetheless I can empathize with the feelings you are wrestling with.

Please let us know how we can best support you.

Annie said...

Carla, I think it is wonderful that you have been so proactive in your fight to get your daughter diagnosed and now, treatment. I just know that with your love and support, she will begin to get better. I don't know anything about verbal apraxia but I get the feeling that Little T is a lot like my Lizzie and WILL overcome!! Hang in there and big HUGS!!!!!

Margaret M said...

Thinking of you!!! I know how difficult it is to think that you are dealing with one issue and finding that it is another. My first adoption was a non-special needs adoption (yeah right!). She was 10 months and could not hold her head up or sit up. She has come so far from those early days. My son's adoption was a special needs adoption. I am a speech therapist and I specialize in working with children who are deaf and hard of hearing but I checked a variety of things on the form. Graeme has a cleft lip and palate and his was the worst cleft palate I had ever seen. Life is a wonderful adventure as we negotiate through therapy and surgeries. Praying for you and Little T. She is so precious!

Jonni said...

Oh sweetie, I was just checking in and saw those beautiful images of Miss T. that you posted and my how her hair has grown and she is so beautiful!

I am sorry to hear about the diagnosis, but the good news is that you now have a diagnosis and can take the steps to help Miss T. with her language. I know what an awesome mommy you are and I have no doubt Miss T. will be talking your and Big T and L's ears off very soon. I am thinking of you sweetie and please give Miss T. our love and let me know if we can help with anything or if you just want to talk, you just give me a call or send me an email.

Sorry we missed you on your last trip up here. Would love to see you guys when you come back.


Carla said...

I have a VERY good friend (she's on facebook as well) whose 11 year old son has verbal apraxia...he was NOT speaking at 3 and almost 4. I've walked alongside her for all of those 11 years and have seen just how much therapy and work apraxia takes...but yes...she WILL be able to talk your ears off one day. catch me on facebook and I'll give you her name...she's a wealth of information and help


Learning Together at Home said...

We adopted our ds knowing he had a repaired cleft lip and palate and an unrepaired fistula (hole) in his gumline. What we did not know is that he also has moderate hearing loss, two perforated ear drums and verbal apraxia.

I can completely relate to your comments about not thinking to much about it all when you are alone with your daughter, but how it becomes more obvious once she is amongst peers.

It is a heart ache. And yet they are still such wonderful little lights.

I can hear that you are in no doubt of your love for her and I can tell that you are a wonderful advocate.

I will be following along on your blog (feel free to pop over to mine) and thinking of you on your journey.

I have high hopes for my son (already at 5 and in traditional speech therapy, and more recently, apraxia focused therapy, he has progressed) and I know God has big plans for our kids. :)

doubledaughterhappy said...

Wow what beautiful photos of Miss T! Praying for progress in this battle. Keep up the fight. I am glad to read some encouraging comments here.

Faith, Hope, and Love said...

Hang in there! I believe with love and therapy these kids can do anything. I have watched amazing things happen for my Mia Hope in the year she has been home.

It looks like you are blessed to have one another and we are definitely blessed to live in a country where there is aweseome help available for these beauties!

Prayers for you! :)


Faith, Hope, and Love said...

The videos are adorable!!!

Love and blessings,

Anne and Mike said...

Holy Cow. We have the exact same story! Luke's special need was supposed to be club foot, but in reality his special need is Apraxia. You've summed up the frustration better than I have ever heard. Not knowing what they think and want is torture. Thanks so much for the honest post and here's hoping both our babies will be talking our ears off by their 5th birthdays.

Ellie said...

oh, I know your pain - except our 7 year old was ASAP/healthy from Ukraine - he has verbal apraxia, diagnoses right before he turned 3. He was adopted at 19 months and honestly it was really difficult for me. He speaks pretty well today - but we fought long and hard to get him the help he needs (4x week speech!!)

We also have a 4 year old heart baby from China (VSD) Tia, I call her "Little T" :) I think we should be friends! sending hugs!


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