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.