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Wednesday, January 21, 2009

An overdue post

Cupid bow lips, what a lucky girl. I had a hard time getting a picture of her today, she kept on moving away, ducking her head, or the pictures were blurry.Don;t you wish you could capture who your children are and how you see them daily, the surreptitious grins, the sly smiles, the coos and the giggles? Amanda is such a complex little girl, but I am frustrated in trying to get her on film, I hope you enjoy the images I managed to get the past few days.
My sassy little lassy. She is opening up every day, she still withdraws into herself, but we can see the feisty and sweet little girl emerging more and more every day.
On her favorite toy right now, I watched her try her best to climb on by herself the other day. She was standing up and every time she placed her hands on the dogs head, it would rock and she would startle and back off. After a few minutes of trying and failing, she slapped it and kicked it out of her way. Mommy came and helped her on, showing her again how to get on by herself, I have a feeling she will be able to in a few more weeks, she is determined! Yes, she is drooling, she is getting two teeth.

Sitting with mommy, and yes, I did not want to be in the picture. Look at her hair! It all grows forward. I have been putting it up in a ponytail, but this one is without it. Still my little buttercup, but less so. LOL

This picture came out red, argh, the flash did not go off, but I could not delete that precious expression, so greyscale here we come. Isn't she precious?

How is that for a face, goodness, Amanda should be in movies, she has so many expressions, she always makes us smile.
The orthopedic doctor will evaluate Amanda tomorrow; we have completed her school evaluations and are awaiting her IEP. Sadly I could not meet when it was convenient for the school (7:30 AM tomorrow, hum, no way, it is just me and the girls and no way to arrange it that early) so I am not certain when we can do it. I think I will be signing paperwork giving them more time, by AZ law; they must complete her IEP within 10 days of her evaluations.

I am frustrated with the special needs-special education system, and things are only getting more complicated. My friend Kathy keeps telling me to get "Negotiating the Special Ed Maze", but when do I have time to read it? I have 10 books here about Down syndrome (Woodbine House), and can read two or three pages at most. This weekend I am attending a Down Syndrome Connection meeting most of the day Saturday, sadly, not about education. I am planning to attend the Wrightslaw meeting her in March, and it is about special education, so I am hoping that anything I am rusty on will be reinforced and it will help me advocate more effectively.
Seems I make everyone mad with my not so insane demands and honest questions, nothing-new there, I excel at irritating and angering people, I ask too many direct questions, makes folks wary of me. According to some parents, it means I am advocating for my kids, but I do not enjoy the contentiousness of it all. Moreover, the people I ask the questions of rarely answer me truthfully; I do not like the ambiguity of the responses I get from them.

The girls SC came over today to get me to sign some paperwork for Amanda’s OT sessions. It seems Amanda will receive weekly OT and feeding therapy for 3 months. After which time they will decide whether she will continue, but it is likely they will hope I learned enough to do it alone from that point forward, it saves them money you see. I asked, "Do you think you can place a time frame on such a thing, Amanda's needs are complex, I really feel an expert should be addressing her needs for a while". The answer to that? "Well, you know, she is over three and the school should be providing this therapy for her, not ALTCS". That was not an answer to what I asked, was it? So I say, yes, I understand that, but it was determined that she cannot function in a school setting at this time. Her reply “Did you get that in writing, I bet you did not, they would never put that in writing” it goes on and on, and left me with a sour stomach and this headache pounding in my temples.
Every time we learn the rules, they are changed, and I said I believed it was to keep parents off balance, so we could not effectively advocate for our children. The answer? Nothing, she said she would not get into a political discussion with me. I am so frustrated and feel like punching something, do they do this on purpose, or maybe they are hoping we will give up and they can stop dealing with us as often (they do have to complete paperwork quarterly). My girls are too important for me to be defeated so easily, so this conflict will continue for a very long time I am afraid.
Is anyone else nervous about what may happen to special education with Obama in office? We know our new Governor Jan Brewer (Our old Governor, Janet Napolitano will be new director of Homeland Security...) Governor Brewer has already indicated she will balance our budget in AZ , and this means cutting funding to existing programs. It is belt tightening time in government (bet they won't take a pay cut though) this will likely include funding allotted for special Ed services. According to the SC, things are only going to get worse for the girls and their access services. (which the school is supposed to provide, so why aren't they, and you should .......)
I think I will stop thinking about this for the rest of the night.

Saturday, January 10, 2009

Trying to walk?

Amanda loves her Daddy, she will not let him sit down unless she is sitting with him! She also does something else for him that she will not do for me; she stand up unsupported. Last night she stood up and took a step. Daddies face showed his pride in her, and Amanda was so excited. Her problem is, she lacks strength in her little legs for walking, they were quivering while she stood there. She needs PT so badly, I hope one calls soon, we have waited 5 months for Kara to get one too, I suppose there are not any in town right now, otherwise, surely we would have one by now.

I need to get over to John's office, no Wendy, I did not completely forget, sorry not enough hours in the day lately/ We will get the pony rider and seat for Amanda next week. I think it will be what she needs to develop strength in her legs. I think this looks like something to motivate her too, see image above. We believe that Amanda is feeling left out since Kara began walking, and this is why she is trying so hard. She really is a jealous little girl lately, and has been kicking Kara and hitting her, uh oh!

I forgot to mention that her dental exam and x-ray showed no issues, the dentist said she may just have issues with her gums like so many kids with Ds do. Well, you know I hate it when doctors generalize about my kids (or folks with Ds), so I will keep a close eye on Manda Moos teeth and gums, I think something may be going on.

Sunday, January 4, 2009

Update on Amanda

I realize I have not said much about Amanda lately. She has so much going on and is so busy; she leaves me with little time to sit down.

She has been home almost 6 months (January 10). We had to send in her very first post placement report, she was adopted June 25, and so the report was due Christmas day, it was a little late because of that.

I thought the questions were difficult to answer because they assume the child can talk and let you know who they love and how they feel about things. Obviously, Amanda cannot tell us this verbally. So we discussed her behavior towards us, how she reacts to certain situations, what foods she likes, and we made a supposition about various things.

Amanda adores two people, mommy and daddy, she tolerates others, but if she has a choice, she will sit with mommy or daddy, and though she is curious about other people, she does not look comfortable interacting with them. Do we think it means our sweet girl has bonded with us, yes and no. I do think she is beginning to trust us and is comforted by us when she is sad or hurt; but the bonding process is continual with her (and Kara). I have read two blogs today by other adoptive parents and they say much of the same thing. I suppose the term “Work in progress” would apply.

She does not like to be left alone indoors; she will seek us out and stand next to us asking non-verbally to be picked up. Her giggle or sigh of delight when we raise her into our laps is priceless, I have to try to capture her coos and giggles for the blog. If she is outside, she will sit in the sun and just bask in it. I don’t suppose she was able to do a lot of that in Estonia. I have to remove her from it because she will sit and sit, non-moving, just watching the dog run back and forth, giggling at Kara and Meghan, and trying to catch the cats tails as they dash about. She continues to drop her head periodically, she will breath deeply if she is stressed or tired, but she does not avert her eyes as often as she used to.

She continues to scoot on her bottom or skirt crawls (one foot, one knee) to get around. We have to dress her in jeans most of the time because she ruins her clothing if we do not. We need a smoother surface outside; our cement is rough. She is learning to climb up on things, and this is a new thing, we sit still and let her crawl into our laps, she used to try and give up and we would help her, but now, we sit on the floor and wait for her to make her own way. Just this afternoon she sat on her stool all by herself!

I think she seems older than she did when we met her in June, more like a toddler and less like a infant. She is finally trying to drink liquids, just a few sips at a time, but it is a remarkable improvement, she sucked some juice up in a straw two days ago. I think it surprised her too. We squeeze the box so the juice moves up without any suction from Amanda.

She is not interested in self-feeding, cannot chew anything YET, we do not give up easily, but she definitely has an aversion with anything harder than overcooked pasta. We have done hand over hand spoon-feeding with her, it confuses her, she gets alarmed, and pushes to spoon away, she grabbed the spoon once and threw it away from her. She is not ready for this yet.

VENT: Our insurance denied our claim for Amanda to see a feeding specialist, they also said she did not need a developmental pediatrician, and suggested that her regular pediatrician could handle all of her special needs. We expected this and ALTCCS (Arizona long-term care) will hopefully cover this now, with AZ budget cuts, that is not a certainty either. Both doctors’ offices were closed until this week, so I am making calls tomorrow for appointments. I am very disappointed with AETNA; they cover so much less than our previous insurer United HealthCare. We pay so much for this insurance too, nearly $1,600 a month, so you would think they would cover more. It is so frustrating to me. WHY do they cost so much? You know the denial letter actually said they needed to make sure their stockholders got good returns; honestly, I do not think people should make money off denied claims; it is disgusting to me. I am hoping something positive will occur where this insurance-HMO mess is concerned. We are so lucky we can afford insurance, but it makes it hard for us to have any extra left for savings. OK, I am done venting.

As the picture shows, Amanda loves to push the glider; she will do that for 20 minutes if we do not redirect her. She will also go into the playhouse and shut the door. When she is in there she will go through her litany of self-stim behaviors. She hides in there to do them because we redirect her when she does them in our presence. Are we doing the right thing? I suppose some will say no, but Amanda’s self-stim are very loud vocalizations and it is hard for anyone to do anything when this occurs. She is now saving them to tell us she is hungry or tired, and we are working on helping her tell us this via sign language. So far, she seems uninterested in sign, she has done more a few times, so it is going to be a battle with her, or maybe she is not ready for this yet.

She loves to grab the collars of our tops and rip them, some stretch and she thinks it is hilarious when mama shows the world her bras, ugh. She likes to pull hair and attacks Kara especially, but Kara usually starts it. Amanda is learning to fight back, somehow I think she always knew this, but was too afraid at first to do it. She has learned a high-pitched scream and practices often...she does not allow us to do much as she is very demanding when it comes to attention paid to her. She takes off her shoes as fast as we can put them on, she does not like to be naked and screeches until her clothes are on. She gets cold easily and we have to put thick tights under all of her clothes. She loves to wipe her boogery face on our clothing and usually does this right after we change to go somewhere. LOL

This is not to say that she isn’t the most adorable little girl ever…she has the cutest little voice and when she hugs us, she sounds like she is in heaven! Her giggles are also so sweet and full of life. She does not think beyond her needs being met. It does seem like she is self-centered, I would expect that out of her right now. She needs to be to survive; all of us do to an extent.

Overall, I feel she is making good progress, the fact that she prefers sitting in our laps to doing anything else means she wants to interact with us, and that is a huge change for her. I do think she did act lovingly towards her nanny in Estonia and it was her fear of us as new people in her life, in being in a new home and hearing a language she did not understand, which made her withdraw into herself. I do believe she was left in her crib too often and confined to that small space too much, her behavior shows this clearly. It is not unusual in an institutional setting.

Neither Tom nor I will say that no, she does not have an autism spectrum, the changes in her behavior are subtle, and people who do not see her regularly do not see all of the positive changes as clearly as we do. When someone new enters our home, she clams up and they do not see her true self, so it leads me to believe that we did not at first either, BUT she does tend to prefer her own company to ours 50% of the time.

Only more time will give us a fuller understanding of who Amanda truly is. Just like Amanda, we are adjusting to our new lives with her in it. Last night I watched her sleeping in her crib and felt my love of her course through me. There is no doubt that we love her, and I think she knows it!

She just stood up to tell me it is time to leave the computer. I hope this is coherent, Manda was singing her unique song the entire time I was writing it and I lost my train of through often. LOL

My three little girls

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