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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.

10 comments:

carol said...

Kris,
You keep asking those questions till you get someone to answer them. As parents of special needs we have to keep going. If we dont who will stand up for our children. People that dont have children with special needs dont know how hard we have to work just to get the tinest amount of theropy or questions answered.
I am so proud of all you do for your girls.
carol n

GoldenAngelsWorks said...

The pictures of Amanda are adorable.

You keep asking questions and doing what is best for Amanda.

You are a great mom and do not let anyone tell you different.

Oh how I wished we lived closer so that I could help you with the girls some time. I know Aleishia would absolutely be in heaven. She loves your girls.

Rachel said...

What a sweetie! Yes, it is so hard to capture kids' expressions...and when I try the picture often comes out blurry because the child moved, lol! Amanda has some great expressions! She is adorable!

Shea said...

I hate that you are having such a difficult time with her therapy. I do love all the pictures of her. Her hair is so pretty and growing so very fast!!!

Alice said...

Kris, The pictures are wonderful. She looks so happy, now.:) I love the one of her sitting in your lap.
I have never been very good at the advocacy stuff. I hate it! I am dreading that part.

WheresMyAngels said...

It is such a frustrating battle. My husband doesn't not understand why I don't want to leave the county we live in, but this is why. My girls have been receiving therapy outside of school for over 13 years, it is paid for thru our services. Our county has an extra tax that assist with this. Now unfortunately, if they don't receive it at school, it is hard to get it outside of school. So now my girls only receive speech outside of school because that is the only therapy they get at school. Both get an hour of speech a week with a private therapist. I do worry how the economy will start affecting all the services.

Mercede has hair like Amanda it all goes forward and we have to spray it to keep it back.

melonie thompson said...

Kris,
Oh she looks so good. You all have been working so hard, and it shows.
Miss you, been way toooo busy.
Hugs, Melonie

Jessica said...

Parents of SN kids learn to be squeaky wheels with a special education team- it works. Just keep at it, be calm and relentless! I've also known parents that have arranged for school therapy services without participation in a classroom. Amanda is still undergoing adjustment and attachment process- you can make an argument that attending class is not in her best interest right now and yet clearly she needs therapy. Just an idea-

Erin said...

Hi Kris!

I've been following your blog for a long time and really admire your heart for special needs children in addition to your persistence in meeting Amanda's needs! Just wanted to introduce myself and invite you to come explore my blog and possibly link to me! I promise you'll be seeing more updates from me in a few hours! :)

Mandy said...

Alex's hair grows forward too :)
How odd huh?!?

My three little girls

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