Tuesday, February 26, 2008

The word that scares everyone....

On February 5th, we met with a new pediatric neurologist who was the polar opposite of the asshat who works in our county. The new doctor greeted Kate and crouched down to talk to her. She talked to us. She LISTENED to us. We loved her.

Even though she told us the exact opposite of what we wanted to hear.

Kate has autism.

And it's funny (well, funny as in "strange" and certainly not funny as in "we're having such a good time"), I've asked doctors repeatedly, "Are you SURE it isn't autism?" They kept telling me, "no -- she's far too outgoing." As much as I knew that Kate was suffering from autism, it still has hit me hard. Hit both of us hard. To be honest, we are both still feeling shell-shocked. Scared. Angry. Confused. But we know this the diagnosis fits.

Sadly, it fits all too well:

  1. We have to work to get eye-contact from Kate. We have to ask for it most of the time. And ask for it multiple times. Or take away an item. Or snap our fingers. Or clap our hands. Spontaneous eye-contact is rare.

  2. Kate is absolutely pre-occupied with books. But because her fixation is books, even experts have overlooked this problem. "A kid fixated on books," they think, "what's bad with that?" Everything, if books are more important than people, relationships, learning, and living in everyone else's world.

  3. Kate doesn't play with toys much. Or friends. When she does, it is because we have specifically taught her how and demanded that she do it if she wants her book.

So right now we are trying to learn and learn FAST. We don't know a lot, but we know this:

  1. Autism is a medical disease that is evidenced by social withdrawal and several other physical symptoms such as digestive issues, sleep problems, learning problems, and impaired relationships.

  2. If not treated intensively, it gets worse. Much worse.

  3. The brain has a window of opportunity to be "molded" more easily. This is typically before age five. While good interventions always have their place, these interventions are more potent when the brain has better plasticity.

  4. Some children can recover from autism; all can improve with treatment.


  5. We're feeling fragile now, but we know we are strong. We could, however, use a few prayers right now.

  6. Kate will become the best Kate she can be and there's nothing we won't do to ensure that happens.

  7. God has blessed us with this beautiful, intelligent, intriguing, grace-filled child because we needed her and she needed us. God has a plan for us and, although it may be painful right now, we welcome His plan and every opportunity to show the world that everybody matters. We are still The Lucky Ones.
More later, but we wanted to update those of you who were wondering about Kate's appointment. The new neurologist has been a definite blessing. She also ordered more bloodwork on Kate (bloodwork, by the way, that I had requested from the AssHat neurologist of our county), and it's all come back abnormal. We will also be doing a 48-hour ambulatory EEG to determine if the abnormal electrical activity is truly seizures or something else. More on that fun procedure later.

Please keep us in your prayers. We'll be fine, but we're just in a bit of pain right now. Ultimately, we're grateful for a diagnosis that is leading us to a better understanding of our sweet girl.

With love from our home to yours,

The Lucky Ones

17 comments:

Patricia/NYC said...

PLEASE PLEASE PLEASE email me, Melissa!!! My nephew is 10 & was diagnosed with autism at 2 years of age...my sister in law knows A LOT about it & has a TON of resources...

My prayers are with all of you. But know this...my nephew is doing remarkably well...it's all about the type of therapy...research ABA therapy...that's what they've been doing for him. PLEASE contact me, though!! :)

Love ya, girl!
Patricia/NYC

Kelley said...

I am so glad that you had a new neurologist! And I love #6: 'Kate will become the best Kate she can be...' You ARE 'the lucky ones,' but Kate is pretty darn lucky to have such an awesome set of parents, too!

Danielle said...

I'll keep you in my prayers. If you want to email me, I have a friend who is an ABA therapist. She might have some tips for you.

Also, I strongly urge you to get Jenny McCarthy's book. Her son has autism and she did some amazing treatments and he showed incredible results.

With treatment, SO many strides can be made!!

Also, I have updated your header, so email me and I'll set it up. You can see that I have updated lots of headers on my blog.

You'll be in my prayers!!

Danielle

Karen M said...

Melissa, {{{{Hugs}}}} I know this wasn't in your original "plan"...and there is a definite loss to grieve in what your expectations for your family might otherwise have been. (I'm sure I've mentioned before, but we grieved a similar "loss" after our second adoption... and, like you, I wouldn't trade things for the world!!)

The finally "knowing" is the best, though, isn't it? Kate will be getting the absolute best help now, and with you and Scott advocating for her, there's nothing that isn't possible (it just didn't sound right without using that double negative!!).

I'm glad you found another neuro. We can't stand the local one either :(

Way back when, I really felt so alone and so isolated, as no one was really talking about any medical issues their FAC kids were having. I felt like others couldn't relate to what we were dealing with (and honestly, sometimes still do!), and worst of all that our acquaintances with kids would sort of drift away. I wish that someone had said to me back then that wouldn't happen (and if it does, who needs those types of people around anyhow?!)

It's probably all so overwhelming just now... so much info to take in and so many types of therapies to research. Know all that, too, will get easier. I'm sorry it's not the news you were hoping for (for Kate). God has already blessed you so very much with this lively, smart, exuberant, gorgeous little one. I can't wait to see what he has in store for you all. Here for you if you ever want a shoulder or an ear... ~Karen

Anonymous said...

She's still the same wonderful little girl you know and love. The label is just a label and only serves to get her the help she needs. :)

Anonymous said...

I'm so sorry you've gotten this diagnosis, but autism isn't the hopeless cause many say it is.

You're in Florida? Call Dr. Jerry Kartzinel in Jacksonville. My nephew was diagnosed at age 2. Non-verbal, very little eye contact, and so much more. Thanks to biomedical intervention and some ABA, today he is a happy, functional almost ten year old who talks a mile a minute. Log onto taca.org and read, read, read. There is so much you can do!

Stefanie said...

Oh my goodness, Melissa. I am so sorry to hear your precious girl is struggling with those issues. But you are so right, you are the lucky ones, Kate blesses your lives daily, I am sure :) Our Isabelle marches to her own drummer, we're still not certain of a *diagnosis*, but we love her just as she is. For if she were different, she just wouldn't be our Isabelle.
Hugs to you, my friend. Please let me know if I can help in any way!

Mike & Ramona said...

Melissa,

I am so sorry and know you must be in shock right now. Our hearts go out to you. But you can be thankful this was caught early. I have heard so many good stories of what kids can do with early intervention. And I'm happy that you are pleased with the new neurologist and she will getting the help she needs!

Ramona

* said...

I know this is all so new to you. I have a son (bio) with Tourette's and PDD(Autistic spectrum). There are doctors out there who have had much success with Autism. http://www.defeatautismnow.com/
This site has tons of info. Here is another neat story about someone very successful with Autism. www.templegrandin.com

Snowflowers Mum said...

Melissa, big hugs and lots of love your way.

I'm so glad you have found helpful professionals to work with, it makes all the difference!

any news on when you go to get Addision?

Hayley
leaving for Paisley tomorrow!

Amy said...

You're in my thoughts during this difficult time :)

The Lewises said...

Scott and Melissa, Just know I'm sleepless tonight partly because we avoided a major accident on the way home after seeing you and because I'm upset about Kate's diagnosis.

But she's such an adorable, bright girl (with killer haircuts), and you're such strong parents that I know you'll all be fine. I admire you two tremendously--you don't wallow in self pity for long before you get cracking!

My neighbor, who lost a daughter to Cystic Fibrosis at age 11 and has a grown daughter with CF who's facing her second double-lung transplant, gave me great advice about special needs kids. When I complained to her about having to see David's 5th specialist in a month, she gently and emphatically said this. "I know it's hard...but remember, he's here with YOU and not alone and going through this. He has a better life with you than he would ever have in the orphanage."

She's right. Kate's with the family she was meant to be with, and a powerful one at that. These kids really teach us about perseverence. You all will succeed, and your friends and family are here for you. Hang in there.

Much love,

Caroline, Kevin, Emily (Kate's Guangxi sister) and David

Beverly said...

I have heard a lot of good things coming from early intervention with kids with autism. It is a hard diagnosis to hear but she seems to be on the higher functioning side. She is beautiful and God was not surprised and He will carry you all through this. Plus I am so glad she is with you guys as opposed to still being in China since they don't typically even acknowledge it.
Beverly

Snowflowers Mum said...

hugs!!

Big diagnosis, but finally an answer.

I am so glad you have found a wonderful Specialist to help Kate.

H

Snowflowers Mum said...

hugs!!

Big diagnosis, but finally an answer.

I am so glad you have found a wonderful Specialist to help Kate.

H

Fliss and Mike Adventures said...

http://www.flutiefoundation.org/ I don't know if you knew about this site? Probably do... sorry to hear about the news but still... at least you know... take care

Journey to Mia said...

Hi Melissa,
I just found your blog and Miss Kate is just adorable. I am a special education director and speech-language pathologist so I deal a lot with autism.

Just wanted to let you know that you can get free services through your local school district for any educational services that Kate would need through the IDEA (Individuals with Disabilities Education Act). She would have to be evaluated by the school district but since she already has a diagnosis that part shouldn't be any trouble. This would include therapies to help increase her speech/language skills, preacademic skils, socialization skills, etc. if needed. Just contact the special education director at your local school.

If you have any questions about this you can contact me:
slane @ callaway.k12.mo.us

Some people don't know about this availability because they think they can't access them until their child enters kindergarten.

Autism is such a big thing right now that there are a lot of resources available for help. I hope you find some good resources to help your family! But remember, this is your little girl and nothing can change who she is on the inside!

Kim Peek (the REAL Rainman) said... "You don't have to have a disability to be different... We are all different!" Love that!