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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.


melonie thompson said...

Dont worry about this lady. she has never been to another country and have been able to see the conditions some of the children live in. The first thing when I went to ACH was why is this child so thin.... ummmmm because he just came from another country???
3 weeks later we wnt home :) You are doing your best.

Meredith said...

I'm sorry you had to deal with this, but know that there are so many things that will help your girls with OT and sensory stuff that you can easily do at home without the 'intrusion' of an idiot in your home.

We had OT for a short time and now I do it on my own with the kids. We had a personality as well as scheduling conflict with our OT and decided just to forgo it for a time... I hope you find something that works out better for Amanda!

GoldenAngelsWorks said...

Oh Kris I am so sorry you had to go through this.

She sounded horrible. Why are there not kind people in positions like this.

Anyone that has dealt with a child knows that what ever is going on with them in July.... will definitely not be the same child in November.

Shea said...

She sounds horrid. I can the positive changes juts by the way she looks since you have brought her home. I hope that mean lady never comes back. She is in the wrong field, I think.

Alice said...

Oh Kris, I am so sorry you had to go through that awful experience! I wish you could go to our OT, she is wonderful, and an adoptive mom. I hope you can find a nicer OT.

Alice said...

OOoooh! I was just re-reading...
She STOOD up all by herself in the middle of the floor? Yay, Amanda!!!!

Anonymous said...

It was very surprising to me how ill informed many of the people who evaluated my daughter were.

They were only prepared to test a child that had been in an optimum environment. Many were clueless. I got the feeling that they had been trained to spot abuse and report it, but did not know how to deal with when it happened in the past and you are now the new family.

All the orphanages I was in over seas would be shut down instantly by social services, OSHA, and the Health Department back in the USA. Ideally they were run by kind people but there was no money and too many children.

It does get pretty crazy trying to explain to professionals why your child is so malnourished, full of parasites, scabies, has a crew cut because of lice, no immunizations, suffers from untreated medical conditions, scars, burns, and some form of posttraumatic stress disorder. If you have an Asian child you also frequently have a huge mongolian spot on their back to explain.

I did not want social services to be called on me. I can remember being very hyper vigilant about documentation the first year to show I did not do this to this child.

She ate like a lumber jack for years and never gained that much weight. I think when they are so thin it just takes a long time to put the weight on.

They also had no concept that maybe my child (who does not have DS) did not know her colors or ABCs because for most of her life the big concern every day was would there be any food.

How much can a child learn if the big thing every day, day after day is will there be any food. Will I have a place to stay, will these people hurt me.

My child did not talk until she was three and pretty much sat and stared for a year. She was so shocked and stunned. She just wanted to sit on my lap and be carried around. It took a year for her to thaw out and then she was fine.

I hate to think what she would have tested at the first year.

Flush said...

I cannot believe the ignorance of that woman. I am so sorry you had to deal with that.

Jennifer said...

I am so sorry you had to deal with that woman. I hope you never have to see her again. I can only hope that something you said may have educated her and will help out some family in the future.

Yay for Amanda for standing!!! She is growing so much!

Cammie Heflin said...

Kris I'm sorry you and Amanda had to deal with this moronic woman. You are Amanda's mother and you know how special she is and the potential she has. Keep pursuing what is best for this beautiful little angel. You are an awesome mom, she on the other hand is an idiot!

carol said...

I am like so many others. I am so sorry that you had such a terrible time with this lady. Hopefully you can find somone that is positive. Keep up the good work that you are doing with all of the girls. I can see a huge difference in Amandas pictures. She seems so much happier and seems more at easy. Take care and God Bless

Debora Hoffmann said...

I just found your blog from RR, and I can't believe the insensitivity of the OT. Instead of being someone who is teachable, eager to learn so that she might help other postinstitutionalized children, she slammed the door to her heart. Unreal! I am sure you will find someone to help your precious little one. You can tell just by looking at the pictures that she is thriving with you. The Lord bless you as you raise your children.

My three little girls

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