September is almost upon us, I cannot believe how fast this year is flying by, it is true that the years go more quickly the older you get!
Meghan has been in school for 3 weeks, we are still working on a better schedule for her, trying to balance the therapy all three girls receive, cooking, cleaning (need to do much more of that) and any doctors appointments we may have, meetings, evaluations, etc. Sometimes getting the 4-5 hours a day in is difficult. As always; her behavior gets in the way of her schooling, but I am determined to get past that and get on the same schedule we used successfully last year.
Homeschooling pushes people’s buttons; from their reaction you have to believe that many assume that you are too dumb to teach your child anything, and why would you ever think you know more than someone with a college education in, well, education!?
Worse for me is hearing the complaints about lack of socialization for Meghan, (and Kara and Amanda) How in the world can they be socialized if they did not go to public or private school? I like this list written by the Bitter Homeschooler, so read it and then come back so I can finish venting a little. :o) (Thanks Jill for showing me the link)
Love what this person says: STUDY
Our other kids did and do attend public schools. My husband works for the largest school district in town, we are not so much anti public school for our kids, but we are for the three youngest, at least in the current environment. Being a part of the system here, my husband hears first hand the complaints made by his fellow teachers when they are forced to have a special ed student in their class. They frankly resent them and the time they take away from "Kids who actually have a future" (do not get me started on that right now).
I cannot tell you how many teachers , therapists, doctors, and even social workers who should know better, still use the term "Downs child" when they discuss my children. Despite numerous reminders from me they continue use this term to describe my daughters, I suppose they have not read or heard about People First language? Our daughters HAVE down syndrome, they are not Down syndrome. They are precious little girls, one loves to dress pretty and dance, one loves to eat, look at herself in the mirror and sneak food from the kitchen (did I mention she likes to eat), the other loves to swim and play outdoors. They are just my beautiful children!
Like many children with Down syndrome; Meghan has an IEP which we follow for her scholastic goals and I adapt her curriculum according to the guidelines given to me in a workshop provided by Jill M, a woman who educates parents and teachers about modifying schoolwork for kids with special educational needs. Meghan (and I) has a classroom and a special ed teacher, a speech and occupational therapist to bounce ideas off if we run into issues. They are an email or phone call away. I think and online charter is the best of both worlds; I love that we can get books, a computer, and on-line courses for free, because it is a charter school, we have it good here! We just learned on Friday that Meghan qualifies for Title 1 math, something we are considering, though it adds another 3 hours of work per week to her schedule. We are contacting the math teacher to discuss this further; we cannot understand why the hours spent on this cannot be incorporated into her daily math schedule. We are also considering Numicon math for all of the girls, we have read many positive reviews from other homeschooling parents.
Most of my friends choose public education for their children with Down syndrome. I do not condemn them for making that decision, I know they are very involved in their children’s schooling, and they trust the system, feel confident they are making the right choice for their child. However I do wish it did not cause a strain on friendships…somehow they think I am judging them.
Homeschooling takes time; we are required to do 4 hours of schoolwork a day, 5 days a week. So we have to make some adjustments so we can navigate through our week with as little issues as possible. Our first obstacle was the number of hours and days we had therapy for the girls; Monday morning was speech for Kara, Tuesday morning feeding therapy and OT for Amanda, and Friday morning speech for Meghan and Kara for 2 hours. Though it probably does not sound like a lot of time spent on therapy, it disrupts our school schedule.
Meghan and Kara had OT evaluations last week, beyond a doubt they need help with fine motor skills, though Meghan may not get approved for in-home therapy…but they both will likely have OT added to our therapy schedule. We are also in the process of adding sensory integration therapy for Amanda and Kara. You can see we may have some issues with organizing our time.
We are hoping and praying a physical therapist will become available soon for Kara and Amanda, but when will we fit that in? We have a PT shortage, so many left when AZ cut funding to early intervention. While Kara is walking, her gross motor skills seem disorganized and clumsy and Amanda at age 4 ½ is not walking yet. They need PT.
As a result of our scheduling issues, Monday is Kara’s last speech therapy session with Ms T. We are adding Kara to Friday’s speech therapy session with Ms. A. Ms. A has been Meghan’s speech therapist since Meghan was a toddler. She agreed to take on Amanda this year, but her schedule did not allow adding Kara too, so we sought a different therapist for her. Ms A has agreed to add Kara after her schedule opened up more, thank goodness for her kind heart! All three girls will begin therapy Fridays at 10:00 and will end around 1 PM; it will be a long morning for everyone.
Kara has no expressive speech, uses little to no sign, and we are in the process of getting her approved for an communication device, they are extremely expensive, consequently we are a little nervous that our insurance will approve her for one, and if not, whether or not our financially beleaguered state will be able to provide one instead. We cannot afford this device ourselves, and honestly I am truly surprised that Kara does not have verbal speech, I just do not understand what happened; she used to call me Mama and Tom Papa. She used to babble and vocalize a lot; she just does not do it any longer. Check out this website to see the device we are planning on getting for Kara. https://store.prentrom.com/ It will surely help her express her needs more clearly, the lack of expressive language is adversely affecting her behavior. She will begin with a device that has 8 choices and move on from there.
Having therapy on Friday mornings means Meghan and I will not be able to attend the reading Elluminate http://www.wright.edu/ctl/dl/elluminate.html session Meghan’s special ed teacher gives. We are hoping she will begin to record her sessions so Meghan can listen to them later on in the day.
We will continue to have feeding therapy for Amanda on Tuesdays. It is helping her immensely, she looks healthier, and has so much more vitality, but she is still below the 5 percentile for weight on the Ds weight chart, her height is at 8%. She is a peanut, but I am not going to worry about her size any longer, as I said on her blog, she is who she is, and she is going to be tiny. (The geneticist and the developmental pediatrician agree with me) She has gained 5 pounds in a year, not bad for a tiny girl. We will continue feeding therapy until she can self feed and learn to chew. She is getting closer to self feeding, not so close to chewing. Tom and I continue to feed her all her meals, mostly pureed and some fork mashed foods. If Kara (maybe Meghan) is approved for OT, they will come on Tuesdays and work will all three girls, we discussed this with their therapists last week.
With all of this going on, I need to be better organized, I am a bit of a procrastinator, and my family does not seem to notice dirty clothes that need washing or floors that need mopping, so I can get stressed out from the demands placed on me with therpay, schoolwork and housework. We signed up for this when we became parents, and then decided to adopt Kara and Amanda, but goodness, I sometimes wish for a day away from all this work! A mommy only day.
If you ever visit me, never expect my house to be clean, there are only so many hours in a day.
Dad, Mom, and baby Meghan
Sunday, August 30, 2009
Monday, August 17, 2009
Pictures from the passenger window-Arizona Highways
We decided to take a little trip and visit my sister, we have been wanting to for months, but Tom worked strange hours all summer, it was not until last weekend that we could go anywhere and we finally took off. Driving a few hundred miles from the intense heat of Tucson to the 45 degree summer nights in Mogollon Rim country. I was excited to go, though truth be told, I was reluctant to leave the house, we had three, yes 3, litters of kittens and the moms would have to stay in the house with them. They go outside during the day to relax and well, relieve themselves, though we have a litter box in the house, we prefer it that way. I worried the moms would devastate the house (they did in their way). We called our oldest son to check on them that evening, but he never got the message, so we had a huge mess to clean up when we came hope and it literally stunk, if you get my drift...
So reluctant mom packed hastily for a visit to cooler temps and higher elevations, which meant fall clothing for us. I was sweating in shorts while I ran around the house, 85 degrees inside with the cooler going, and I could not imagine being cold in a few hours, but many family reunions taught me to be prepared.
Despite those things, we had such a good time, the best part was visiting with family, anyone who knows me knows I love to chat. Julia, my sister and I hunted for geodes, crystals and other treasures in the dry stream beds. We ate Elk roast from a cow my sister got earlier this year (or late last year, not certain) and came home with homemade jellies and jams, made from fruit my sister and her hubby collected in the forest.
We really needed more than two days to catch up, but at least we were able to have two.
I took pictures along the way, thought I would share with you.
Love the rock formations in Southwestern states
Yes, Saguaro's, we had to take some of the thousands of Saguaro's! I missed the lake in this shot, we had finally climbed high enough to see the lake. We drove through valleys and small hills as we climbed in elevation until finally, there it was! Roosevelt Lake! You can see a tiny bit of the lake to the middle left. I admit, it is difficult to get a really good picture in a moving van through the windshield. I think I did OK though, at least after I rolled down the window. When I was growing up the sight of the lake brought great excitement. We knew we would be able to cool off in it's fishy waters soon! I spent many hours walking along it's shores trying to catch guppies, stealing water dogs from fishermen, not realizing it was wrong, just knowing they were cute and were dying as fish bait!
After too many blurry pictures I begged Tom to pull over so I could get some better shots of the lake and surrounding area. This is the new bridge at Roosevelt Lake, I like the old road around the lake much better, we used to drive across the old dam The road was narrow, and sometimes scary, but I loved it. My father worked at the dam for a time as a security guard post retirement, he was never one to sit around. He loved it as much as I did. I think all of us; my extended family and I, loved the old dam.
The Roosevelt Dam, this is not my picture, I found it here: http://www.edupic.net/sci_pics.htm
http://www.msnbc.msn.com/id/5797238 The picture above is from 2006, taken from this old article. They had to move the marina to a new cove, as the old one became too shallow to accommodate the boats. My sister said they made a temporary ramp for the boats to dock; a rutted dirt road, so narrow and she had to back up down the hill, boat and all, where she would get stuck in the mud. It was not the best of times.
The lake last weekend, so happy that the lake is full once more. The marina in it's new home.
Just a sailboat, I wonder who they were? I wish I could do that, it looks so relaxing.
Meghan did so well on the trip, I was proud of her for staying dry and using an unusual potty at the gas station. She has come very far since she decided potties were better than pull-ups.
One of my sisters many hand fed "pet" birds, a few years ago she rescued this Robin's great grandfather, whom she calls Junior. Junior was the sole survivor when the nest he was in was attacked by crows. For as long as I can remember my sister has saved birds, especially nestlings, or at least she tried, when she was a child she did not know they could not eat bread with milk.
Approaching Oro Valley! Something I missed when I was in Ukraine and Estonia; the Arizona sunsets and the lack of tall structures. You do not know how claustrophobic buildings and even trees can be when you are used to wide open places and great expanses of sky.
Almost in Tucson, the Santa Catalina's at dusk. Taking a digital picture with little light from a car is not easy LOL.
So reluctant mom packed hastily for a visit to cooler temps and higher elevations, which meant fall clothing for us. I was sweating in shorts while I ran around the house, 85 degrees inside with the cooler going, and I could not imagine being cold in a few hours, but many family reunions taught me to be prepared.
Despite those things, we had such a good time, the best part was visiting with family, anyone who knows me knows I love to chat. Julia, my sister and I hunted for geodes, crystals and other treasures in the dry stream beds. We ate Elk roast from a cow my sister got earlier this year (or late last year, not certain) and came home with homemade jellies and jams, made from fruit my sister and her hubby collected in the forest.
We really needed more than two days to catch up, but at least we were able to have two.
I took pictures along the way, thought I would share with you.
Love the rock formations in Southwestern states
Yes, Saguaro's, we had to take some of the thousands of Saguaro's! I missed the lake in this shot, we had finally climbed high enough to see the lake. We drove through valleys and small hills as we climbed in elevation until finally, there it was! Roosevelt Lake! You can see a tiny bit of the lake to the middle left. I admit, it is difficult to get a really good picture in a moving van through the windshield. I think I did OK though, at least after I rolled down the window. When I was growing up the sight of the lake brought great excitement. We knew we would be able to cool off in it's fishy waters soon! I spent many hours walking along it's shores trying to catch guppies, stealing water dogs from fishermen, not realizing it was wrong, just knowing they were cute and were dying as fish bait!
After too many blurry pictures I begged Tom to pull over so I could get some better shots of the lake and surrounding area. This is the new bridge at Roosevelt Lake, I like the old road around the lake much better, we used to drive across the old dam The road was narrow, and sometimes scary, but I loved it. My father worked at the dam for a time as a security guard post retirement, he was never one to sit around. He loved it as much as I did. I think all of us; my extended family and I, loved the old dam.
The Roosevelt Dam, this is not my picture, I found it here: http://www.edupic.net/sci_pics.htmWhen people hear I am from Arizona, they often ask about the cacti and deserts, but Arizona is a varied and unique environment, I love it here.
The lake is so full this year, when we drove along this road in 2006, we saw a much different lake, a depressing sight, the water was at an all time low.
The lake is so full this year, when we drove along this road in 2006, we saw a much different lake, a depressing sight, the water was at an all time low.
http://www.msnbc.msn.com/id/5797238 The picture above is from 2006, taken from this old article. They had to move the marina to a new cove, as the old one became too shallow to accommodate the boats. My sister said they made a temporary ramp for the boats to dock; a rutted dirt road, so narrow and she had to back up down the hill, boat and all, where she would get stuck in the mud. It was not the best of times.
The lake last weekend, so happy that the lake is full once more. The marina in it's new home.
Just a sailboat, I wonder who they were? I wish I could do that, it looks so relaxing.
Meghan did so well on the trip, I was proud of her for staying dry and using an unusual potty at the gas station. She has come very far since she decided potties were better than pull-ups. She is a really good traveller, and rarely complains as we drive along.
Kara sound asleep, at least until she heard, Food Kara, then her eyes flew open and she was wide awake. Kara loves her food, and Meghan, and everyone else's...We ate at the Dairy Queen Brazier on the way to see Aunt Sandy. Kara loved her french fries and chicken strips. We rarely eat fast food like that, so it was a real treat.
I could not get a good picture of Amanda from the front seat, she was all the way in the back with Julia, but she never slept, she looked out the window the entire trip, jabbering away and enjoying the scenery.
One of my sisters many hand fed "pet" birds, a few years ago she rescued this Robin's great grandfather, whom she calls Junior. Junior was the sole survivor when the nest he was in was attacked by crows. For as long as I can remember my sister has saved birds, especially nestlings, or at least she tried, when she was a child she did not know they could not eat bread with milk. I saved one bird in my life, a young pigeon capture by two teenagers intent on burning his wings, and I raised him, and later his mate (he flew away one day and returned with her a few days later) through three clutches, mom and dad said enough was enough, we had 8 pigeons roosting in an old doghouse, and they did not smell very good. LOL. Frosty and Velvet had to go.
Sandy told us that Junior flew away for the winter to roost with the other Robins and brought home a mate early spring, they nested in her trees. They raised a brood (or two), and they have returned every year. This year, the Robin in the picture was chasing all the others away, including Junior, and taking all the meal worms for himself.
Approaching Oro Valley! Something I missed when I was in Ukraine and Estonia; the Arizona sunsets and the lack of tall structures. You do not know how claustrophobic buildings and even trees can be when you are used to wide open places and great expanses of sky.
Almost in Tucson, the Santa Catalina's at dusk. Taking a digital picture with little light from a car is not easy LOL.Friday, June 5, 2009
Our little water rats :o)
The girls have a small wading pool for the hot summer days, yes, we sure wish we had a in ground pool, especially for US when it gets hot, but ya know, the stress of keeping the girls safe with one, well, I will pass. Too many kids drown in AZ every year in backyard pools. With this pool, we fill it up every day and then pour it out using buckets that get hauled to the citrus trees and then water the grass with the rest of it. The girls stay safer that way.We cannot get Amanda out of the pool once she goes in, but she does not like to share, she gets upset when Kara and Meghan join her, and usually neither of them do, so Amanda plays for a couple of hours, as you can see, she gets to wear a tee and hat, as she gets burned otherwise, but the girl is TANNED and it looks so sweet on her. LOL
Kara also likes the pool to herself, but does not like the pool as much as Amanda, and Meghan, with her fear of water, only gets in when she feels up to it. She is getting a little better.
Saturday, May 30, 2009
Some pictures from my phone one year old.
I am one of those people whose children know more about their phone than I do. I have an old LG, takes pictures, plays music, I barely use it, I rarely leave home, who needs it when I have the home phone?
I have been taking pictures with my phone for two years, I am finally downloading them, lots of before and afters, they are not high quality images, but they are special to me.
Look how tiny our girls were last summer. This was before we brought Amanda home, they still get in the car that way, but they do not have as much room. :o)
Meghan climbed in the stroller after we took Amanda out to have her fitting for her SMO's. She is too big for the stroller, now, she seemed to grow overnight, it always sees that way, doesn't it, and Kara is SO BIG now.
Kara was home for 1 1/2 months here, still looking a little shell shocked, she was adjusting slowly to life in our family
Kara today at the orthotists, such a different little girl, so giggly and open. Amazing to be able to see the transformation. She is such goofy little girl, toddles around and smiles and plays. She likes food too much and we have to keep it out of reach, she decided nutter was fun to eat and broke my butter dish the other day, it is impossible to find a replacement and I am a little sad about it. I glued it.
This was taken in September 2008, Amanda had been home for two months. Oh goodness, she was so pale and tiny. Well she will likely always be tiny.
Amanda today, she has a tan! LOL, She is playing in the pool too much, with her Carotenemia, she has a golden tan.
She is such a sweetie pie, but stubborn and can get mean in a blink of the eye, mommy is sporting a scratch on her face, courtesy of Manda Moo.
I have been taking pictures with my phone for two years, I am finally downloading them, lots of before and afters, they are not high quality images, but they are special to me.
Look how tiny our girls were last summer. This was before we brought Amanda home, they still get in the car that way, but they do not have as much room. :o)
Meghan climbed in the stroller after we took Amanda out to have her fitting for her SMO's. She is too big for the stroller, now, she seemed to grow overnight, it always sees that way, doesn't it, and Kara is SO BIG now.
Kara was home for 1 1/2 months here, still looking a little shell shocked, she was adjusting slowly to life in our family
Kara today at the orthotists, such a different little girl, so giggly and open. Amazing to be able to see the transformation. She is such goofy little girl, toddles around and smiles and plays. She likes food too much and we have to keep it out of reach, she decided nutter was fun to eat and broke my butter dish the other day, it is impossible to find a replacement and I am a little sad about it. I glued it.
This was taken in September 2008, Amanda had been home for two months. Oh goodness, she was so pale and tiny. Well she will likely always be tiny.
Amanda today, she has a tan! LOL, She is playing in the pool too much, with her Carotenemia, she has a golden tan.
She is such a sweetie pie, but stubborn and can get mean in a blink of the eye, mommy is sporting a scratch on her face, courtesy of Manda Moo.
Tuesday, May 19, 2009
Yea, yea, yea, I know, where have you been?
I know, where have you been? Why haven't you updated? Simple explanation, I did not feel like it, hows that for honestly? I did not think very many folks actually read the blog, it was more for me than them, and it was time-consuming to post in it, so I just stopped. Slowly I realized that I was not keeping record of milestones, I always posted them here, so I had a reminder of them later. I will try to do better.
We are pretty boring; boring is fabulous, as we have been otherwise before, and I do not wish for exciting any time soon (as in illness or strife). Some of my sons are making some serious decisions about their futures. Though we are worried, we will support them in their choices. Julia and her boyfriend broke up, it has been very hard on them, and on Mom, who hates to see anyone in pain. We have another set of kittens in the house, and yes, we know about spaying...5 kittens, two black with boots, two Siamese-looking, and one grey tabby. The kittens are always born between the 25th and the 28th of April. Without an international trip to go to this year, we are wondering how summer will be for us. Though I believed I may go to Nicaragua, I do not think that is in the plans any longer. Personally I wish we were going somewhere exciting, but after paying for two international adoptions, we have no savings to play with.
Our school district, the main one that Tom works for, is cutting music and art classes in an effort to balance their budget. They eliminated my husbands position (choral and general music), though he remained on the job due to tenure and seniority. He got his Masters in educational technology, and guess what he will teach next year? They threw him a bone and let him keep ONE chorus class. When will they realize that the arts contribute to overall intelligence? How many studies will they ignore? There are none so blind and they who WILL NOT see.. Makes me terribly sad for all the children who will miss out in learning to express themselves creatively. Have you seen the ads on TV to bring the arts back into schools? Let me tell you that even if they raised money "for the arts" the schools decide where the money can best be spent, and they may decide to use the "arts" money for new computers or football equipment. Giving money to school districts for programs you want to see in the curriculum will not work. Advocating for the return of the programs will, en mass; but how many parents care enough to try?
Oh well, enough of that, it is a sore spot in our family, two children sing, 5 play musical instruments, two are in musical theater. Two are visual artists like their mom. So yes, we believe in the importance of art in the lives of every man woman and child on the planet. Enriching lives, improving cognition, maintaining attendance in schools? Nah, not important.
We were happy that Meghan was approved for another year of swim therapy, she is terrified of big pool, she also will keep speech therapy once a week. We got a new SC for our girls, I met her briefly, she is an older woman, and because I stink at remembering names, I can't remember hers.
Therapy takes up a few hours a week for us, Kara has speech on Mondays, Amanda had feeding therapy on Wednesdays, Amanda and Meghan have Speech on Friday, and Meghan has water therapy on Saturday. We are still waiting to hear about a physical therapist for Kara and Amanda. I do not know why it is taking so long, time to make another call.
This is the last week of school for everyone, I am so happy Meghan will be done, she had a relatively good year, and of course we are not going to stop teaching her over the summer. We have Handwriting Without Tears and will use it to help her with her writing, got some Squizzers so she can cut better as well. Some fine motor issues need to be addressed with her. An OT from her on-line charter called and began to tell me what Meghan needed, not because she evaluated her in person, but because "All kids with Down syndrome have these weaknesses". I am afraid that statement sends me into anger very quickly, please people, do not generalize, children with Down syndrome are as different as typically developing children. Angry advocate mommy emerged, then I had to apologize... tell me, why does that statement make me so mad?
After seeing Meghan's pictures I realized her swim suit is too small, looks like we need another one. I adore this one she has, maybe I can find a larger one on eBay? She has become such a mother hen to her little sisters, she has also taken to putting the groceries away when we go chopping. Sometimes puts things in the freezer that don't go there, but she does a great job with putting everything in it's place.
I cannot believe that Meghan is close to her tweens. She changes more everyday and we are hoping that her speech continues to improve, though I understand her perfectly, many people cannot. She is a little girl with so much to say too.
Kara was running a fever the night before, not all that well when she got in the pool, the water was not all that cold because the sun had warmed it, but she was not laughing and playing like she normally does. She and Julia both have coughs.
Finally, somewhat of a smile on Kara's face. When she feels sick, there is no denying it. I hope this passes quickly for her. Normally she is like the Tasmanian Devil, she whooshes through the house wrecking havoc. She also giggles the entire time she destroys things. Such a stinker, Kara is always the child people gravitate to, they adore her, and she is endearing and oh so cuddly, she melts into your arms and gives the sweetest hugs.
Kara is such a pretty girl, whereas Amanda is tiny and fragile looking (but is not fragile at all); Kara is robust, a little chubby, wide shoulders, tiny hips, built like a gymnast. She has also grown the last couple of months and moved into 4T's in some clothing. Meghan did not wear them until she was 6. We will have to watch Kara's weight.
Me to our speech therapist; "No Amanda does not put anything in her mouth." Uh hum, and look, she is eating a sucker, can we say blushing crimson, though I admit it, proving mom wrong in this instance is a great thing. It was a icky sucker with artificial ingredients and dyes, and yuck, she loved it, don't kids always love those very things, I buy organic suckers for them all the time, Meghan loves them, but Amanda prefers the icky ones.
Amanda does not like the swimming pool, no way, I put her in the day after we bought it and she had a melt down, but leave her to her own devices and she decides to try it again. She spent two hours sitting outside of the pool splashing,. I guess she decided it looked good after all. She climbed in fully clothed....Meghan and Kara decided it looked like a good time and joined her, Kara took off all of her clothes and got in, whoops, and Meghan put on her suit and joined both of them.
It is fun to see Amanda overcome her fear of the water, clothing dries!
Looks at that hair, please tell me you do what I do and you wash your kids hair when they are in the kiddie pool, Amanda hates baths, so I decided to get the shampoo and have at her in the pool, I also put some Burt's Bees Baby Bath in the water...two birds, one stone...:o) 
Julia is pretty petite, check her out on the rocking dog, and yes, she told me not to post this picture, but it makes me smile! Sorry Julia LOL.
We are pretty boring; boring is fabulous, as we have been otherwise before, and I do not wish for exciting any time soon (as in illness or strife). Some of my sons are making some serious decisions about their futures. Though we are worried, we will support them in their choices. Julia and her boyfriend broke up, it has been very hard on them, and on Mom, who hates to see anyone in pain. We have another set of kittens in the house, and yes, we know about spaying...5 kittens, two black with boots, two Siamese-looking, and one grey tabby. The kittens are always born between the 25th and the 28th of April. Without an international trip to go to this year, we are wondering how summer will be for us. Though I believed I may go to Nicaragua, I do not think that is in the plans any longer. Personally I wish we were going somewhere exciting, but after paying for two international adoptions, we have no savings to play with.
Our school district, the main one that Tom works for, is cutting music and art classes in an effort to balance their budget. They eliminated my husbands position (choral and general music), though he remained on the job due to tenure and seniority. He got his Masters in educational technology, and guess what he will teach next year? They threw him a bone and let him keep ONE chorus class. When will they realize that the arts contribute to overall intelligence? How many studies will they ignore? There are none so blind and they who WILL NOT see.. Makes me terribly sad for all the children who will miss out in learning to express themselves creatively. Have you seen the ads on TV to bring the arts back into schools? Let me tell you that even if they raised money "for the arts" the schools decide where the money can best be spent, and they may decide to use the "arts" money for new computers or football equipment. Giving money to school districts for programs you want to see in the curriculum will not work. Advocating for the return of the programs will, en mass; but how many parents care enough to try?
Oh well, enough of that, it is a sore spot in our family, two children sing, 5 play musical instruments, two are in musical theater. Two are visual artists like their mom. So yes, we believe in the importance of art in the lives of every man woman and child on the planet. Enriching lives, improving cognition, maintaining attendance in schools? Nah, not important.
We were happy that Meghan was approved for another year of swim therapy, she is terrified of big pool, she also will keep speech therapy once a week. We got a new SC for our girls, I met her briefly, she is an older woman, and because I stink at remembering names, I can't remember hers.
Therapy takes up a few hours a week for us, Kara has speech on Mondays, Amanda had feeding therapy on Wednesdays, Amanda and Meghan have Speech on Friday, and Meghan has water therapy on Saturday. We are still waiting to hear about a physical therapist for Kara and Amanda. I do not know why it is taking so long, time to make another call.
This is the last week of school for everyone, I am so happy Meghan will be done, she had a relatively good year, and of course we are not going to stop teaching her over the summer. We have Handwriting Without Tears and will use it to help her with her writing, got some Squizzers so she can cut better as well. Some fine motor issues need to be addressed with her. An OT from her on-line charter called and began to tell me what Meghan needed, not because she evaluated her in person, but because "All kids with Down syndrome have these weaknesses". I am afraid that statement sends me into anger very quickly, please people, do not generalize, children with Down syndrome are as different as typically developing children. Angry advocate mommy emerged, then I had to apologize... tell me, why does that statement make me so mad?
After seeing Meghan's pictures I realized her swim suit is too small, looks like we need another one. I adore this one she has, maybe I can find a larger one on eBay? She has become such a mother hen to her little sisters, she has also taken to putting the groceries away when we go chopping. Sometimes puts things in the freezer that don't go there, but she does a great job with putting everything in it's place.
I cannot believe that Meghan is close to her tweens. She changes more everyday and we are hoping that her speech continues to improve, though I understand her perfectly, many people cannot. She is a little girl with so much to say too.
Kara was running a fever the night before, not all that well when she got in the pool, the water was not all that cold because the sun had warmed it, but she was not laughing and playing like she normally does. She and Julia both have coughs.
Finally, somewhat of a smile on Kara's face. When she feels sick, there is no denying it. I hope this passes quickly for her. Normally she is like the Tasmanian Devil, she whooshes through the house wrecking havoc. She also giggles the entire time she destroys things. Such a stinker, Kara is always the child people gravitate to, they adore her, and she is endearing and oh so cuddly, she melts into your arms and gives the sweetest hugs.
Kara is such a pretty girl, whereas Amanda is tiny and fragile looking (but is not fragile at all); Kara is robust, a little chubby, wide shoulders, tiny hips, built like a gymnast. She has also grown the last couple of months and moved into 4T's in some clothing. Meghan did not wear them until she was 6. We will have to watch Kara's weight.
Me to our speech therapist; "No Amanda does not put anything in her mouth." Uh hum, and look, she is eating a sucker, can we say blushing crimson, though I admit it, proving mom wrong in this instance is a great thing. It was a icky sucker with artificial ingredients and dyes, and yuck, she loved it, don't kids always love those very things, I buy organic suckers for them all the time, Meghan loves them, but Amanda prefers the icky ones. Yep, she needs her bangs cut, AGAIN.
Amanda does not like the swimming pool, no way, I put her in the day after we bought it and she had a melt down, but leave her to her own devices and she decides to try it again. She spent two hours sitting outside of the pool splashing,. I guess she decided it looked good after all. She climbed in fully clothed....Meghan and Kara decided it looked like a good time and joined her, Kara took off all of her clothes and got in, whoops, and Meghan put on her suit and joined both of them. 
It is fun to see Amanda overcome her fear of the water, clothing dries!
Looks at that hair, please tell me you do what I do and you wash your kids hair when they are in the kiddie pool, Amanda hates baths, so I decided to get the shampoo and have at her in the pool, I also put some Burt's Bees Baby Bath in the water...two birds, one stone...:o) We took all the girls on a ride to the grocery store last night. I was closing in 10 minutes, so the little girls stayed in the van with me and daddy ran in to get what we needed. Amanda had a fit because daddy did not take her, she began to sob in the back seat and was inconsolable. When daddy came out of the store 8 minutes later, he took her out of her car seat and held her. She slapped his face and yelled at him... hmmm, did I mention those two adore one another, but the slapping needs to STOP. He did calm her down a little, and guess who gets to go with daddy next time he needs to pick up something from the store. :o)
Amanda cried as we drove away from the store, such a desolate little cry, heartbreaking. Her sad cries made Meghan cry in sympathy and Kara joined in because she was already feeling poorly. Tom and I just smiled at each other, the girls love one another, none of them want to see the other one in pain. Though a chorus of girls crying is not a pleasant sound by any means, it was one we were happy to hear.
Julia is pretty petite, check her out on the rocking dog, and yes, she told me not to post this picture, but it makes me smile! Sorry Julia LOL. Monday, May 4, 2009
Friday, May 1, 2009
Appeals Court rules DES can trim funding for disabled
This article is from the Daily Star, May 1, 2009, I am so saddened and disappointed in the judges who made this ruling. Can you imagine how many people with disabilities will lose everything they had to help them be better able to live as independently as possible?
Tucson Region
Appeals Court rules DES can trim funding for disabled
By Howard Fischer
Capitol Media Services
Tucson, Arizona Published: 05.01.2009
PHOENIX — Arizona is free to cut services to an estimated 30,000 residents with developmental disabilities, the state Court of Appeals ruled Thursday.
In a unanimous decision, the judges found that nothing in state law bars the Department of Economic Security from reducing services, overturning a trial-court ruling blocking cuts made in response to a legislative order to trim spending.
The three-judge panel rejected arguments that those who have been getting help from the state are legally entitled to the services that have been specifically recommended for them.
The judges also concluded there was nothing illegal about the state reducing what it pays to organizations that provide services to those with disabilities — funding cuts challengers said would affect those services.
Thursday's ruling comes less than two months after Judge Joseph Heilman of Maricopa County Superior Court blocked the DES from cutting services. Heilman said he had reached the "inescapable conclusion" that the haste with which DES acted in cutting its spending "has served to create nothing less than mass confusion, anxiety and uncertainty" among those who receive benefits from organizations paid to provide services.
Heilman also said the DES acted to reduce services even though lawmakers did not relieve the agency of its legal responsibilities to provide care for those with mental-health problems.
Jennifer Nye, an attorney for the Arizona Center for Disability Law, said she was disappointed in the ruling.
"We know that thousands of adults and children with disability are going to be harmed by these cuts in services and rates," she said. Nye also called it "very shortsighted on the part of the state to balance its budget on the backs of its most vulnerable population."
Lawmakers made $580 million in spending cuts in late January as part of a plan to deal with a $1.6 billion budget deficit.
The DES share of that was close to $100 million. But the agency said its total cuts really amounted to more than $150 million, with cash taken from special accounts and the refusal of lawmakers to provide additional needed funds.
The DES, in turn, cut payments to service providers by 10 percent. It also eliminated services for people who are moderately developmentally disabled who, with support, can work in the private sector. And it dropped funding for early-intervention services for 2,000 children, from birth through age 3, who are at risk for developmental disability.
The appellate judges said lawmakers did nothing wrong in making a lump-sum cut to the DES budget and letting the agency decide what services to trim. They said legislators were faced with "a sobering assessment of plummeting revenues."
Tucson Region
Appeals Court rules DES can trim funding for disabled
By Howard Fischer
Capitol Media Services
Tucson, Arizona Published: 05.01.2009
PHOENIX — Arizona is free to cut services to an estimated 30,000 residents with developmental disabilities, the state Court of Appeals ruled Thursday.
In a unanimous decision, the judges found that nothing in state law bars the Department of Economic Security from reducing services, overturning a trial-court ruling blocking cuts made in response to a legislative order to trim spending.
The three-judge panel rejected arguments that those who have been getting help from the state are legally entitled to the services that have been specifically recommended for them.
The judges also concluded there was nothing illegal about the state reducing what it pays to organizations that provide services to those with disabilities — funding cuts challengers said would affect those services.
Thursday's ruling comes less than two months after Judge Joseph Heilman of Maricopa County Superior Court blocked the DES from cutting services. Heilman said he had reached the "inescapable conclusion" that the haste with which DES acted in cutting its spending "has served to create nothing less than mass confusion, anxiety and uncertainty" among those who receive benefits from organizations paid to provide services.
Heilman also said the DES acted to reduce services even though lawmakers did not relieve the agency of its legal responsibilities to provide care for those with mental-health problems.
Jennifer Nye, an attorney for the Arizona Center for Disability Law, said she was disappointed in the ruling.
"We know that thousands of adults and children with disability are going to be harmed by these cuts in services and rates," she said. Nye also called it "very shortsighted on the part of the state to balance its budget on the backs of its most vulnerable population."
Lawmakers made $580 million in spending cuts in late January as part of a plan to deal with a $1.6 billion budget deficit.
The DES share of that was close to $100 million. But the agency said its total cuts really amounted to more than $150 million, with cash taken from special accounts and the refusal of lawmakers to provide additional needed funds.
The DES, in turn, cut payments to service providers by 10 percent. It also eliminated services for people who are moderately developmentally disabled who, with support, can work in the private sector. And it dropped funding for early-intervention services for 2,000 children, from birth through age 3, who are at risk for developmental disability.
The appellate judges said lawmakers did nothing wrong in making a lump-sum cut to the DES budget and letting the agency decide what services to trim. They said legislators were faced with "a sobering assessment of plummeting revenues."
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