Missed her birthday post by a day; Happy Birthday Amanda!

She enjoyed her day, her new toys to love on and carry around; she loves squishy baby dolls, spiky soft play balls and soft stuffed toys. While buying her gifts I was overtaken by sadness, she was turning 13 and I was buying toddler toys for her. Autism has stolen a lot from our Amanda, yes she still loves us fiercely, sometimes too fiercely, the head butts can hurt, but she is attached to her family and we; especially her mother and father, are attached to our daughter.

She ended her night with birthday cupcakes, and decided that she needed to devour the frosting off of as many as she could, raking her hands across the mint chocolate chip frosting and shoving it in her mouth. She was in heaven! A huge smile on her face. She finds happiness in the simple joys of life.

We love you darling girl.

Another year older!

A Happy Birthday to Amanda!

She got to go see a movie and had her favorite vegan chocolate cupcakes, we don't do huge events for Amanda because it isn't fun for her, instead we had a small family gathering following the movie.

Amanda is a scrappy little girl, tiny, thin, but strong and healthy, and we are grateful for that! She is growing on a consistent curve, but she will never be a tall woman.

Yes, autism still lives here, however, Amanda seeks out cuddles, reassurance when she is reprimanded for destructive behavior, which she is working hard at curbing, and she has a growing need for company and play, she no longer craves being alone. That is progress. Nothing happens fast, but we stopped expecting it to, we accept her and love her for who she is right now.

She is content with her life and is a wonderful daughter.

Happy 11th Birthday Amanda

Poor Amanda is poorly for her birthday, we kept the day low key for her so she can rest, for the first time she has pneumonia, and  it unnerves me especially. It is a mild case.

Pictures and more when she is feeling better and her Mama has had more than 4 hours of sleep!

Happy 10th birthday Amanda!!

Amanda's morning hair wash, hugging her new toy, and two pictures  out of 100 where she actually looked at me! :) 

Miss Manda Moo is getting older, but not really growing much bigger. She is tiny! Just 38 pounds her last doctor appointment.

She is very healthy regardless of her size, she rarely gets sick, thank goodness.

Amanda spends her days moving from one activity to another, sometimes at a very rapid pace.  She rarely sits still.

She adores Signing Time video's, Barney, Disney movies, right now that means Frozen, yep, seen it over 1000 times by now,  but I will watch it 1000 more times if it brings a smile to Amanda, Kara and Meghan's faces!

Amanda loves playing with soft baby dolls and stuffed toys, she likes getting face to face with those toys and biting their noses, hugging them, licking them. She likes toys with big eyes the best! None of her baby dolls are allowed to wear clothing, she strips them nude as soon as she gets them.

Speaking of clothing, we cannot keep clothes on this girl. We have resorted to one piece swimsuits or leotards with button and zip Bermuda shorts, she wears footy pajamas  to bed and sometimes during the day. She cannot get those articles of clothing off yet.

 Complex.

That is Amanda in one word.

She craves attention and she does not care how she gets it; negative or positive is OK with her,  we try not to give her much negative attention...which can be extremely difficult to do when she is throwing furniture over or hurting her sisters. Deep breath, do not yell...

Amanda has mixed sensory issues.

She gets her feelings hurt easily.

She has the sweetest giggle.

Amanda can scream LOUD, it is a new behavior, oh, and I am not a fan.

She can duplicate many animal sounds with accuracy!

She has no expressive language, although she can say a few words consistently, she communicates through gestures.  She had a communication device that did not work for her, we are awaiting another appointment with language specialists to help pick out a new communication program for her.  She gets speech therapy once a week and has since we brought her home.

It is very challenging and disheartening not to be able to converse with Amanda. She cannot tell me with words, how she is feeling, however I have become very good at reading body language.

Amanda can eat with a spoon but prefers her hands. She likes to put her legs on the table too. She likes rubbing her hands all over her hair when she eats too.

She has the cleanest hair!

Amanda is considered severely delayed, but that label does nothing to describe how clever she is.  Her delays are from a combination of factors;  Institutionalization, Down syndrome, and Autism.

Amanda attends a virtual public school and is in the 4th grade. She has a special education teacher she has on-line sessions with 3 times a week, but mommy does the one on one teaching. Amanda is working on pre-academics.

Autism

A word I do not care for.

I am angry at autism for stealing away the life Amanda could be having.  It means people avoid her instead of getting to know her; her inappropriate behaviors make certain most parents keep their children far away from our sweet girl.  

Amanda is not unlike other children with Autism and Down syndrome, I talk to enough parents to know there are common struggles for the kids with a dual diagnosis, and for their families, who often feel very disconnected from their Down syndrome communities.  Kids with dual diagnosis are vastly different than children with only Down syndrome.

Amanda wakes up every morning at exactly the same time, she greets me with a huge hug and she giggles a sigh of contentment.

After she is out of bed,  she heads right to her chair to eat.

She eats at the same time daily. She prefers a set schedule but I feel that she is getting more adaptable to change. Her behavior used to get worse after an unplanned and off schedule outing or visit from family, it does not happen as often as it used to.

She goes to bed at the same time every night, she loves her routine!

LOVE

We love our daughter, she has been a family member for nearly 7 years. It feels like she has always been here. 

Adoption Day 2008

I think of Amanda's birth mother on her birthday and on holidays, I hope she knows that  Amanda is loved and cared for, that she is safe, healthy, and thriving.

 

 I am so grateful that we were able to adopt our sweet daughter. 

Happy Birthday Amanda!

A little update

Picture taken in June, from left to right top row; Melissa and Desmond, Eric, Fred, Kris and Amanda, Brian and Kara. Second row, Meghan with her head down, Julia, Tom, Terry (standing) Mathias and Anna.

 Family gatherings are rough on Amanda, she gets a bit overwhelmed and will pull hair, scratch, or she will screech-scream.  She likes the sofa all to herself, she likes watching her TV programs, she does not want loud people hanging around in 'her' space. Which is why I am holding her in the picture above. She was unhappy that her brother was sitting on HER sofa.

Sitting next to Kara without scratching or hair pulling!

A week ago we had a birthday party for her sister Julia, Amanda did fairly well; yes she did pull hair once or twice, yes she did pay too close of attention to her nephews (spelled stalking...), but considering her last family party, it was a marked improvement.

We were so proud of her for showing more self-control. As she gets older, Amanda has shown that she can be a little less impulsive, she is a character, and she makes us laugh daily with her shenanigans, but she is also a very sweet little girl who loves being hugged!   

Happy 7TH Birthday Amanda

Waking up to a few presents, she actually seemed excited when I sang her happy birthday. What she wanted more than anything else was her cake, she actually threw a hissy fit when we took too long to serve it. She had a gluten free chocolate cake with peanut butter creme cheese frosting. She had two pieces!

We cannot believe Amanda is so old,  she was just three when were adopted her, 4 years went by so quickly. She has changed a lot in many ways, but autism does change who she would have been without it, sometimes we see that little girl and it makes us sad she cannot be her all the time. I truly hate autism. 

Amanda though, we love and adore her!

Amanda and Brain, she adores her big brother. Brian helps with
the girls so mommy can get away, or just read a book.

Miracles happen sometimes

Yes, to us this is a miracle, we have worked hard with Amanda, feeding therapists have spent time with her, and her um, determined nature stopped her from doing this for 6 years...at last she has decided feeding herself is better than waiting to be fed, and all of us are celebrating her accomplishment. WTG sweet Amanda.

Happy 6th Birthday to Amanda

Yes we are still here

I know it has been a very long time since I have posted on Amanda's blog. I do most of my posts on the family blog, though admittedly, I have not been doing that either...

Amanda is finally interested in playing with her sisters, solitary play seemed to be what she needed for a very long while, Kara and Meghan have bonded very well and Amanda gets left out sometimes, but not to be deterred, the little scamp pushes her way into their games, and sits on them. Like it or not, they will include Amanda!

Amanda loves soft dolls and lately, Raggedy Anne is her favorite toy this week. She walks around the house holding the doll by her hair, and then sits with the doll in her lap, face to face so she can kiss and lick it. (time to wash this doll, yuck) Amanda is a 100% walking girl now, she is so adorable when she walks, still tiny and so slim, and she looks like a 18 month old, hard to believe she will be 6 next month. I have been asked a few times if she has dwarfism too. Umm, no.

She is getting sassy and bossy, she does not say words, but she does tell us off in her gibberish.

Yes, wild hair girl, she loves to run her hands over her hair after licking them and her hair looks so messy, I have a 30 minute window after it is washed to get a picture of her hair clean and smooth!

She will not leave anything in her her or on her head, so no ponytails, hats, nothing. I have found dozens of hair pretties in the dirt outside after she goes out to play.

All in all Amanda is doing very well, she survived a horrid flu season with a runny nose and some cold sores. She slept a lot for a few days and ran a few low grade fevers while other children were ending up in the hospital. We all passed the flu back and forth for weeks on end, but we are finally feeling better. Thankfully none of us got seriously ill.

2 years ago today

A court in Tallinn Estonia made Tom and I Amanda's parents. In Estonia, they actually remove the old birth certificate from their records and replace it with one in our names, or so I am told. That made me feel rather sad, as if they were erasing her birth family from her existence. We do have her original BC though. I never forget to say a prayer for Amanda's birth mother and to thank her for allowing Amanda a chance of a forever family. Yes, we are her parents now, but her history and heritage will always lie in her home country, she got her genes from there, her blond hair and sky blue eyes were from someone in her family, I hope they think of her sometimes too...

Amanda on a 104 degree day

Our little waif has changed a lot, but it happened so gradually, we did not notice, now all of a sudden we are seeing her as a different little girl. One major change is a little pot belly, oh my, who would have ever thought skinny Amanda would get a belly? She is very strong though, little stinker does a Pilates-like abdominal move hundreds of times a day, I could never do it like she does. It amazes everyone. LOL She actually moves constantly, either waving objects around, or sliding them on the floor, rocking on the dog,  or trying to walk across the floor, she rarely sits still. I think I would cease to have a weight problem if I did everything she did all day.

She adores this little rocking toy, originally it was purchased for Kara, but Kara is too big for it now, she tried to rock the other day and the dog refused to move for her, Kara was an unhappy gal.. Amanda has decided that it is a ride on toy and scoots it all over the yard. The bottom has been worn away so much it barely rocks any longer, and there is a hole forming along the side! We are considering getting a new one for her,  but I wonder if she would still choose this one?

Amanda  and Kara adore the pool, but the pool looses their bowels and mommy and daddy are so weary of fishing out little surprises and emptying that pool, scrubbing down the little stinkers, ugh.  I am hoping for potty awareness soon, hoping and praying, I think Kara may be ready, I am thinking of building a privacy screen and letting her go beside the pool in the potty chair, weird I know, but we have to start somewhere. Thankfully Meghan is past this stage.

Amanda has learned to play, now that probably sounds funny, because shouldn't playing come naturally for children? Well before we had Meghan, I used to think so, but sometimes they need a little help.

When she came home, Amanda would grab objects and shake them, her favorites were envelopes and pieces of paper. She would get lost in the shaking, doing it over and over; repetitive behaviors, obsessive behaviors. Common when your child has autism too.

So it really warms my heart when I peek outside when she is playing and see her hugging a dolly baby, planting kisses on their little faces, running her hands over their hair. She is also putting objects into things now, she used to take them out and toss them over her shoulder, so that is progress as well. She enjoys rolling a ball to us, but she also throws it over her head and behind her, and she laughs her head off. Meghan retrieves it and we start over.

She is exploring different toys in the yard, and venturing into places she should not go. Like the dogs water!

No matter how well we block this off, she still finds her way to it, Amanda loves water, splashing in it, swimming, playing with the hose, a far cry from her first bath in Tallinn, when she was terrified and trembling. Now she hears water running, and she is there in a flash.

Amanda can walk, she is still getting steady on her feet, but her leg muscles were pretty atrophied, still she exercises daily and is gaining better upper leg strength. Her calves are skinny little sticks, though not as thin as they were. You can see muscles in her upper thighs that were not there before, she will continue to improve.

She still prefers to scoot to get where she is going, but she also crawls on her hands and knees now, which to me is a delight to see, gotta love motor planning progress.

After a long afternoon in the pool, what does a little girl do? She falls asleep on her favorite toy. 

Adoption is such a wonderful gift; Amanda is our beloved sweetheart, sometimes frustrating, often stubborn and LOUD when she does not get her way, she is also sweet and silly and loving. Her therapists say she is the easiest to work with, that she is compliant (not sure that is a good thing either LOL)  We are grateful we were allowed to be her family.