Maria's first reading lesson

Last month I attended a workshop on teaching children with Down syndrome how to read. It was fabulous.  The presenter was Terry Brown and she has created a curriculum based on her work. Her website is www.sohappytolearn.com.  I have been reading the manual and gathering materials and trying to balance life. But today was the day we started. I want to document Maria’s progress so we can see how far she advances and celebrate her accomplishments.  Enjoy!

Part 1:  http://www.youtube.com/watch?v=S78X3mrMJ8o&feature=g-upl

Part 2: http://www.youtube.com/watch?v=iyPIk9lvd8k&feature=g-upl (I apologize for some reason the end gets cut off and the audio is noisy)

Attachment

A few months ago, I had hoped to update everyone on how we all were doing with attachment. It’s probably good that I didn’t write that post during one of my emotional lows (thanks Hubby!)  The truth is, it has been a very stressful time.

Remember the first time we met Maria?  I thought it was amazing how open she was to us and how quickly she began to call us Mama and Dada. (We later found out "Dada was her way of saying the generic term for "man")

She actually responds this way to E.V.E.R.Y.O.N.E. This is not healthy for children who do not understand the love of a family.  I know lots of kids with DS are affectionate, but if they are biological, they already come from a secure background- knowing mommy and daddy love them and will provide for their needs.

I have been working so hard to do things with Maria to form trust between us. I rock her to sleep before nap and bedtime. She loves it!  I do not leave her in the care of anyone besides my husband and me.  Sometimes I swaddle her; sometimes I feed her from a bottle. Lately we have been doing aqua therapy- the touch has been great for bonding.  

Despite all of this, there would be moments that left me feeling frustrated and angry that we really weren’t as bonded as I thought we were.  I remember one day at the park a few months ago. She ran up to a woman stranger and threw her arms around her, then reached up and asked her to pick her up.  I was so hurt and so furious at the same time.  To me, it felt like all the effort I had put in was worthless.   I went over to her and picked her up and told her “Mommy is here. If you need a hug, you can come to Mommy.”  The thing is, she rarely comes up to me for a hug or for me to pick her up like she did the stranger. 

Something that I would have done differently had I known that Maria would be having attachment issues, is to hold off on any therapy until she was home 6 months.  I know she has benefited from the therapy, but it has been so stressful for our family, I think we would have been better just getting to know her better and not adding in all the extra people to her life.

Maria has been home for 5 months now.  Within the last few weeks I have seen some very amazing signs that we are attaching better.

We went down to UCLA to have a sleep study done to see if Maria has sleep apnea.  When the nurse came in to affix the suction cups and wires, Maria didn’t try to get her attention and throw her arms around her. She actually looked at me with sad eyes and told me she was scared. She looked for Mama for comfort! This is HUGE!

Then the following week, we were at Physical Therapy.  The therapist had Maria do some new things that made her anxious.  Again, she didn’t throw herself on the therapist (like she used to do), but instead came to me for a hug and encouragement. 

Finally! There has been a breakthrough. I know it will just get better with time, but I am praising God for what He has done so far and for giving me hope to keep trusting.  

Before: July 2011

After: April 2012

Maria's heart

I had a bit of a rough night last night.  I stayed up a little too late trying to get paperwork together for Maria’s doctor’s appointment today.  Then I woke up in the wee hours of the morning startled from a bad dream.  I had a dream I was in Russia, picking up Maria.  My hubby wasn’t there with me, but my friend Kelly Dirkes* was.  We went to pick up Maria and were surprised to find her biological father there playing with her.  I started talking to him and he was acting very naturally as if he “knew” her.  I asked him how many times he had visited her and he said once before.  I really wanted to get more info from him about his background and especially wanted a photo of him.  We decided to wait until her biological mother arrived to get a photo of both of them or all of us or whatever.  While we were waiting for her, however, the “dad” said he had to go out for a minute and that he’d be back.  Shortly after, the “mom” arrived and she was very stoic and uninterested.  The “dad” never returned and I was so upset that I didn’t just snap a photo of him while he was there.  Then I woke up.

So frustrating!  Nothing in my dream was actually true.  Her parents refused her at the hospital and never visited her.  I think I daydream sometimes about what her parents might look like and so wish I had a photo of them.   

 Our dancing queen: signing "dance"

At our local DS Association Valentine's Dinner/Dance: Maria with her friend Grace

So despite my sleep-deprived state, I took Maria to the pediatric cardiologist today.  She was a little nervous like she normally is at doctor’s offices, saying in Russian that she’s scared.  The doctor did an ECG and an ultrasound.  Her heart was repaired when she was 8 months old.  I got tons of medical paperwork on gotcha day, but none of it was translated.  I was able to get some of it translated, but I never did understand exactly what condition she had nor what type of surgery she had. Finally the doctor was able to explain it to me! She had Atrioventricular Canal Defect (ACD) which he said is the most common congenital heart condition for kids with Down syndrome.  It is basically a large hole in the center of the heart.  From what he saw, he said it was a very successful surgery and it should continue to hold up over time.  Yay! We will have annual check-ups to make sure that this continues as she grows.

Maria 2 1/2 months after heart surgery

After the doctor we stopped to pick up some groceries.  Today was a rainy day, so Maria had on her Disney Princess light up boots and her hooded rain jacket.  As I started to get her out of her carseat, she was saying something to me in Russian that I didn’t recognize and was resisting getting out of the car.  I think she was wary of going out in the rain! I’m sure in the orphanage they did not go out in the rain and if they did, I’m sure they wore a snowsuit.  She was probably wondering why I didn’t even have a scarf for the poor girl.  So I promised her a cookie at the store. I figure she only deserved it after braving the doctor and the rain.  As soon as we entered, she started signing and asking me for “cheese”.  Such a smart little stinker! They have started putting out cheese samples at Trader Joe’s and she remembered from last week!  Then we went and tried the sample of the day, “falafels”.  She was still not satisfied and kept asking for a “cookie”.  So I started looking and found the perfect cookies: Lemon Heart Cookies.  After purchasing them, dodging cars in the parking lot and avoiding puddles, I got her securely fastened in the car and started to leave.  “Mama, cookie.” Oh yeah, I forgot!  This “little cookie” has the BEST memory and not just for food! She retains things I only teach her once. She is really surprising us every day.  (BTW- these cookies are SO good! They are like shortbread cookies and are light, crunchy, nutty and lemony-yum!)

  Two weeks ago, the school psychologist did an evaluation on Maria and modeled a vertical and horizontal line and asked her to copy what she had done.  Before then, all of her drawings had been circles.  Today, she recalled the horizontal/vertical lines and spontaneously began recreating them!

Our budding artist

*I’m pretty sure Kelly was in my dream, because I am thinking about her! She and her husband Kyle left today for their court trip.  Please say a prayer for them- I know how stressed and anxious I was before court! They are only about $5000 short of being fully funded and would be so blessed if you are interested in helping them bring Charlotte home! 

Best buddies, Charlotte and Maria entertaining the Dirkes in November