I am growing up so fast!

Lilypie - Personal pictureLilypie Kids Birthday tickers

Amanda

Amanda's age

Lilypie 4th Birthday PicLilypie 4th Birthday Ticker

God Doesn't Make Mistakes

For Amanda

Our three T21 princesses

Friday, November 28, 2008

A not so great meeting with an OT


Two words condescending and accusatory.

That sums up the attitude of the woman we saw today. She wanted to know, "WHY CAN'T she walk yet”, "Why is she so skinny" "Why is she so delayed" She said this with a raised eyebrow and a look of distrust and dismay, as if something I did prevented Amanda from reaching those milestones. You know how it is though; you want to give folks the benefit of the doubt, so at first you shrug off these statements. I already told her, Amanda was adopted and had been home less than 5 months.

She asked me why Amanda could not drink from a cup, I told her how they fed Amanda at the orphanage and I repeated she spent many hours in a crib and she had no early intervention therapy, her response, "She needs to see a neurologist, nutritionist, and a developmental pediatrician immediately, something is terribly wrong with her." I thought to myself “REALLY? I HAD NOT NOTICED”. (Oozing sarcasm) I told her that was why we went to Child Find; to have her evaluated so we could begin to get services for her, she said, “What do they have to do with that, Down syndrome alone is enough to get services.” Excuse me; but nothing is further from the truth, I wish it were this easy. Apparently, she does not know that in AZ that is not the case. The CHILD, even with Down syndrome, has to have specific mental and physical delays before they will get OT, PT, and ST, or qualify for ALTCCS. WHY wouldn't an OT know this, she should. So she says, “Has she had a DDD intake yet”, I say of course I say, three days after we got home.” She repeats, then why are you just now seeing an OT for evaluation. Hello? You called us when you had the first opening, and that was on Wednesday the 26th of November, TWO DAYS AGO, almost 5 months after you got the referral. She says, "Well sometimes it takes a year to get in here", but she is asking me why we are just getting in there, is she on drugs? Grrrrrrrr, in addition to that, we HAD to get her evaluated by the school district first, to determine her delays; it is the school districts responsibility because Amanda is over the age of 3. She says “Why, why them, are they qualified, I need their names”. She had already said she knew who Child Find was, but her questions said she did not.

"Did you know she was this delayed when you adopted her" hum, yes, we did spend 18 days with her before she came home. "What is WRONG with her?" well lets see; she has Ds and Anirida, and she lived in a special needs orphanage all her life. "what is aniridia, I never HEARD of THAT?" "What was it like in the orphanage?" So I tell her what aniridia is and say; Hey, we have no idea what the orphanage was like, we were not given a tour, and in fact, all we saw was a small kitchen and a living room. We did not see any other kids, we did not see Amanda's room, her nanny, her groupa, and we saw no one but two caregivers. we know very little about her family, we know very little about her life before we brought her home, she simply says "Well, why don't you know?" (You see why I am getting hot under the collar now?)

She was treating me as if I was lying about who Amanda had seen and what we had done for her, she implied we were not feeding her enough food even though she has gained 3 pounds. The energy coming off her was disdain and distrust. Little by little, I began to feel angry at her questions and her implying I was not feeding Amanda well, and was not being a good parent to her.

I listed for her the doctors Amanda saw and why because I was beginning to feel defensive and irritated, and she rolled her eyes and said it did not matter, all she needed was our support coordinators name and the contact person at Child Find. I am not giving her the information, I hope to never see this horrid woman again, and I did call her supervisor to complain about her lack of professionalism, left a voicemail, and wonder if I will ever hear back, somehow I doubt it.

When we take our precious girls in to an evaluation, we are looking for answers, for someone, a professional, to help us help our new children. We need them to be helpful, patient, understanding and kind, everything this young woman was not.
When we see so many positive changes in Amanda and are so proud of her, it bothers us, ME, to have some judgmental young woman tell me we/I am not doing enough. Amanda is not dying of starvation for heavens sake, she is thriving, she is happier now than she was when we met her, seeking love and attention and today she stood up in the middle of the floor, no support, and it was awe-inspiring. It is the small pebble that sometimes causes an huge avalanche, and it is the tiny steps that are needed to improve our girls lives, why can't others see the small miracles we do each day, and why is it that they only see the negative.

The OT could not fathom Amanda’s life before she came home, good orphanage or not. It was not a loving family who took care of her, she did not get the therapy she needed to be stronger, smarter, healthier, as much as they may have loved her in Estonia, and I hope they did, she did not have a mama and papa. It makes a difference, and if they want to label Amanda failure to thrive, fine, but SHE IS NOT, she is thriving, growing, changing, and damn it, the paperwork The oafish OT had was from July 18th, right after we arrived home. As far as I am concerned, anything written then is no longer accurate.
Thanks for letting me vent, I was so upset, I could not see straight after that appointment. My poor husband was getting a crown on a tooth he broke and grumpy about the $480 he had to pay for it. I called him all upset and he was in no mood to hear it, but he too is weary of so called professionals who think they know more about our children than we do. He does not want Amanda near the woman again either.
We have both decided, it is time to find positive people to deal with where our girls are concerned, no more of these burnt out people who only see the bad in the world, we need someone to celebrate every tiny victory with us.

Tuesday, November 25, 2008

Forgot to mention

Our Amanda is turning yellow, apparently carotene will settle there, and I guess all the sweet potatoes, yellow squash, and carrots she eats are having an effect on her. And yes, the white of her eyes are WHITE. She is OK, but with yellow hands and feet. LOL

Amanda is 4 months old


Eating her lunch after our appointment.

Well, according to the folks at Child Find, that is her developmental age. We just got back from her evaluation, and yes, I agree with them, Amanda is very delayed, she can crawl and sit up, so she does have motor skills that are beyond 4 months, but in everything else, yes, she is very much like a tiny infant.

After much discussion, I admitted to the very nice staff (An OT, OT, ST, nurse, and psychologist) that I do not feel it is prudent to send Amanda to school in January. She is making tiny steps towards attaching to us, but sending her to a school now would just confuse and scare her. The psychiatrist agreed with me, we should wait until she has been home a year before sending her to school.

We discussed sending her to the Myers-Ganoung Project Able because they have children with profound special needs in the classroom, and they feel she would fit in better there. I do not like the idea and this is my issue with it; I am of the mind that if you want a child to model peers, putting them with children with severe delay (most more delayed than themselves), that they would not progress and could perhaps regress as they model the behavior and mobility of the children they are with. This was the reasoning we used when we placed Meghan in fully included Kindergarten. We could see that she wanted to be like the children she spent her day with in her project able, most only there for slight speech delay.
Amanda came out kind of yellow in the original of this picture, so I did a color correction, check out her eyes, LOL, they are grey blue normally. :o)


I am happy to say that for the very first time since we came home with her, Amanda sat in the tub and did not cry in terror. She even splashed and actually enjoyed herself!

Small but very rewarding steps.

Sunday, November 23, 2008

A dirty but a happy face

Amanda is a hard person to photograph, but when she smiled, she is just so adorable! She was giggling at me and having such a good time here, and yea, she just finished eating, and we have to get new bibs.
She goes for formal evaluation Tuesday, part of me wishes they would see how far she has come, but most folks fail to notice what we do, we are not going to get glowing reports, but at least she can start services.

Tuesday, November 18, 2008

Things that make us smile

Amanda loves the rocking dog, but she has not figured out how to climb up on it. I have been helping her step by step, but so far she has not made the connection on her own.

I am certain we will address her lack of mobility at her Child Find appointment next week. She is severely delayed in motor skills.
I think the small things she does show how well she is adjusting, after lunch, she creeps to her crib for her nap. She does not always sleep, but she seems to need that time alone to re-energize regardless.

Thankfully her cold is almost gone and she is not the snot machine she was. My goodness, but she can create a lot of ...mucous.
I cute her hair a little bit, trying to keep it out of her face, I will be glad when it is all one length and I can put clips in it. Or little bows, maybe even pigtails?
A very good friend is in Estonia right now adopting her sweet daughter Alina. Their court date is tomorrow, please pray all goes well for them. Alina is their 4Th Estonian child.

Saturday, November 8, 2008

Getting used to being in her new home

It is so exciting for me to see Amanda come alive before my eyes, I know that there is much to be learned about her, but lately, she has come to me to be held and tickled. She has begun to trust me enough to lie back and be held like and infant, at first she would peer up at me with a furrowed brow, and now she smiles up at me with a twinkle in her eyes. What a privilege to see this transformation in her.
She is beginning to show emerging skills in playing and spends all day saying mama ma and Dada, also bababa.
She spends less time with self stim behaviors and more time wanting attention and love. PTL for this, I have been so worried about how shut down she was. She still does have issues, it takes a lot to get her to come out of her stupor and play, but each time it takes less time.
Her giggle is musical and always brings Kara and Meghan to our sides, Meghan adores Amanda.
Can you say hallelujah with me?
The word for today is HOPE.

Sunday, November 2, 2008

Tropical Tree Frog Costume GIVEAWAY!!!!

Tropical Tree Frog Costume GIVEAWAY!!!!

Christmas Angel Tree Program



Reece's Rainbow began their Angel Tree program on the 1st of November. Since 2006 this has been a major fundraiser for this Down syndrome adoption charity.

You can make a donation towards an individual child's (children) grant fund. Every cent donated remains in that child's grant fund until they are adopted. This year there are 100 precious children, all with Down syndrome, who desperately need forever families, some who will soon face institutionalization.

Amanda received donations in her Reece's Rainbow grant fund which helped us with the costs of her adoption. Donations like these make a huge difference in a family to afford adoption, it also helps a family commit to a child who has a large grant. Please give generously.

Please remember that there are other places who offer individual family grants as well, such as Gift of Adoption Fund, they have helped our family adopt both girls, and have been very generous with us. We could not have completed Kara's adoption without their help, and they continued to help by awarding us a post-adoption grant that helped us pay off $2500 of the $7,000 we still owe in adoption debts.

This holiday season, instead of buying another DVD or CD for a gift, please think about giving the gift of a forever family to an orphan. Please donate today.

My three little girls

My three little girls
Finally got all three to smile at once