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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Sunday, August 30, 2009

Homeschooling and therapy

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. 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 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.

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:

When 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 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.

I think it is wonderful that my sister lives in a place where she can have friends like this.
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.

Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video