Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"
Showing posts with label Post institutional care. Show all posts
Showing posts with label Post institutional care. Show all posts

Saturday, August 02, 2014

A Little bit of Audrey

Audrey has been home 4 1/2 months now. Last week we put up a small pool. Yesterday she was scared to death of it. Today she watched Asher and Abel splash around and decided she wanted in!


Audrey LOVES music and will do almost anything if you put it to music. She is imitating more and more. It is so fun to see her coming out of her shell! Her understanding of English is increasing daily. She follows directions really well. Sometimes one of the boys don't understand a direction so she will do it for them! Please excuse my annoying singing in this video! (the boys in the pool to the side make it look really deep. Its only waist deep on them. They LOVE it!)




Sunday, April 20, 2014

11

One year ago yesterday, Abel turned 10. For the first time in his life he had a Mama and Papa there to show him love on his birthday. Here is what I wrote on his big day last year:

Today our son turns 10 years old.
For 10 years he has never known love. He has never had a mother, a father, a family, a home.
He has never seen food prepared.
He has never seen a kitchen.
He has never seen a refrigerator full of food.
He has never had a real bath.
He has never gotten to lay in a tub full of water and watch the bubbles float around him.
He has never been tucked in at night with a kiss and a hug.
He has never had anyone to calm his fears in the middle of the night.
He has never NOT been thirsty.
His 10 years of waiting are over.
This birthday party was done for our benefit. It wasn't something Abel was used to seeing. Only the children who had families or regular visitors had birthday celebrations. Abel was scared to death by the attention. (the frosting on the nose is a tradition but I don't know it's meaning. When I find out, I'll edit here.)



That years seems forever ago. The scared little boy, who ruled his world by intimidating his caregivers, threatening them with tears, or heavy pieces of furniture.

Today he is 11. In one year his life has changed so much!

He has a mother, a father, a family, a home to call his own. A bed that ONLY he has ever slept in.

He helps prepare the food, and set the table and clear it too!

He loves to be in the kitchen.

He carries groceries in from the car and puts them away where they belong with very little help.

He enjoys a bath for a few minutes, but Abel is "all business" about most things in life so his baths are pretty quick. Splish, splash, rinse and get out!

He gets tucked in every single night, with a hug and a kiss, and "I love you."

You may remember this video, taken the first night we had custody of him. We are very familiar with institutional self-soothing behaviors, but we were shocked by the intensity of Abel's. He did this off and on all night long.


Every morning when Abel wakes up, the hair on the back of his head is a matted mess from this rolling, and once it got longer than an inch it would break off. Then one day about 3 months ago I realized the previous two mornings Abel's hair was not knotted. We watched him that night. Sure enough, Abel had quit rolling in the night! He sleeps soundly most of the night now.

Abel had no way to communicate when we met him, though he had come up with some gestures the institution staff recognized to have certain meaning but mostly he just mimed everything.

And now, one year later, he uses ASL sentences! "I need bathroom." and "I want drink please." "Outside go please." etc. He signs more than Axel and Asher do!

Abel has severe Post Traumatic Stress Disorder (PTSD) and anxiety associated with it. He is still hyper-vigilant but we have seen improvement from one year ago. In school he is trying so hard to be good, but the fact he is back in an institutional setting is very difficult for him. I debated keeping him home and homeschooling him. I know I could do a good job, but there will come a day when Abel will need to be with a caregiver other than Dean or I, and he is going to have to behave. Better for him to learn this now than in a couple of years when he is much bigger and stronger. Thankfully our school district has been very understanding of the challenges Abel faces due to his traumatic past. We are in very close communication, and there have been times when I'm at school every day of the week. It was especially rough for Abel while I was gone to complete Audrey's adoption. Not because he missed me, but because Mom, aka "the cop" was gone!

As far as attachment goes, this is a rough area for Abel. We do see see tiny glimpses that he is attaching to us, but he still struggles.  He is starting to give affection (this is new for him) but he doesn't know who to give it to. Dean is his first choice, but a teacher, or school support staff, or a stranger who comes to our door will do too! This is probably one of the most difficult skills to teach our adopted kids.  I have to say, in many ways Dean and I feel like we are tools to Abel's existence and nothing more.  We love him, we care for him with love, and we know that in his own way he loves us, but love is hard for Abel. Its something he isn't used to and so he resists it. It doesn't really matter to us if he never attaches to us. Our job is still the same.  Our job is to be his parents, whether he loves us or not. To teach him the skills he needs to be as independent as he is capable of being. At certain times it is clear Abel needs to disconnect from us and spend some time doing his own thing (usually stimming with a toy or ball) because that is what he spent 10 years doing and it is his default now. Every day we give him some time for this, particularly right after he comes home from school, and then we encourage him to join the family. Over the past year we have seen his alone time decreasing, and more often he brings his stimming toy out to the family area to be near us in his alone time. It is good to see, and gives us hope that one day he will let us in even more.

I've said it a thousand times, but I'm going to say it again. Adoption isn't easy. Adoption is trauma. Is Abel better off here than the institution? Absolutely! But the transition to a good place came with its own set of traumatic events. Abel had 10 years of nutritional, social, environmental and educational neglect. We will give him years of positive experiences to learn the things he was never given exposure to before.

And with that, I leave you with the birthday boy, so different in just one year. (please excuse my horrid singing!)



Abel was a bit annoyed when he came to breakfast and found balloons tied to his chair. 


Abel LOVES vehicles that little people can fit into. He gets very frustrated with vehicles that don't have people in them! He spends a lot of time looking inside them and trying to squeeze toy people that are too big into the tiny holes. He has really enjoyed these two vehicles so far, because he can open the doors and sit the people in seats. He tried to put his big toe in the bus, an attempt to get on, I think!

And of course, Audrey loved the birthday cake from her first American birthday party! 

Happy Birthday Abel! 
We are so proud of how far you've come! 

Wednesday, August 15, 2012

9 Months Home

Most people do a "6 months home" post, but...well...we all know I'm a slacker, right?

Today Asher had a 6-month post-adoption visit with the International Adoption Clinic at the University of Minnesota. Asher and Axel were the first kids with DS to go through that clinic so they've really appreciated being able to follow them. Also, both boys will be appearing in Dr. Eckerlie's upcoming book that deals with issues related to orphan care post adoption.

So, on to the visit!

Asher has grown 2 1/2 inches (thats .28 inches per month) and10 lbs since his adoption 9 months ago. He is now the same size Axel was when he was adopted just 20 months ago at age 10! I really do not remember Axel being this small! In fact today Asher is wearing a pair of pants Axel wore to the hospital when he had his surgery a year ago in May. Don't get too excited though. Asher is still incredibly small. He doesn't look like a 2 year old anymore though. Now he might almost look 3 1/2 - 4!

Back in January when he was first seen, Asher's iodine was very low, which can cause problems with thyroid function. The fix for that is iodized salt, fish, etc. Today Asher's TSH came back really high, which is indicative of hypothryroid, something that is a common problem among people in the Down syndrome community.

His other blood level that came back today was Vitamin D. Back in January his Vit. D level was at 15. Normal is between 30-100. Asher's level of 15 is almost nonexistent. Well, today after months of treatment and playing outside in the sunshine, his level is DOWN to 13.

We're now being referred to pediatric endocrinology to address both issues.

Dr. Eckerlie was very pleased with the changes she sees in Asher so far. His gait is much improved as are his oral motor skills. She was also excited to see Axel with us, since she hasn't seen him since he came home in December 2010. Axel has grown more than a foot since then and gained 20 lbs. He doesn't even look like the same kid.

So, who out there in the blogosphere has experience with chronic vitamin D deficiency?