Dad, Mom, and baby Meghan
Tuesday, August 31, 2010
Blood work A-OK
Monday, August 30, 2010
Wednesday, August 25, 2010
Wow, we got an award!
http://www.medicalbillingandcoding.org/top_down_syndrome/#T_21_and_us
It was fun to see a few blogs of good friends included. There are so
I think all of us want people to understand that our children are
Wednesday, August 18, 2010
Yearly check-ups, plays, school, weddings!!
Our oldest son Fred has been riding 25 miles a week, all in one day, it sounds like a long ride to me, but he says it is not that bad. He called Sunday and told me they took an hour off their time, that is amazing. Wish I could ride along, it sounds like a good workout, but I am not as young as I used to be either, I doubt it would be a good idea to start with 25-26 miles for me LOL.
I am hoping Fred and I can see" Bodies the Exhibition" this weekend, we have been planning to for a while, and it leaves next weekend.
The most exciting news around here came today; our son Terry is getting married on Friday!! He and his fiance' Anna have decided to go to the JOP instead of trying to plan a wedding on a shoestring budget. We are hoping an appointment is available, we will find out tomorrow afternoon. We are not at all certain we will be allowed to go in the office, the website says two witnesses. Tom and I definitely would bring our three little gals, and that puts us way over 2! Plus Anna's parents want to be there too. What can we do? We do not want to miss this very important day either. Maybe they will let us stand in the hallway and participate from there, I do not remember the office being very large. No matter how things turn out Friday (or another day if no appointments are available Friday), we are very happy for Terry and Anna.
We have not seen much of Eric lately, busy time for weddings in the summer, he is the event planner where he works. We saw him and his GF Melissa a few weeks ago and had a nice visit.
Brian is currently in a play, 25th Putnam Country Annual Spelling Bee we have not seen it yet, we are hoping to make it this weekend. The reviews have been really good so far, he said the big review comes out tomorrow or Friday!
Brian comes over twice a week to help us with the girls, it is a huge help for me now too, especially with home schooling. It has been really nice to see more of him too, he is also really busy with work and acting.
Julia is a senior this year, I am still in shock over this, I remember the day the ultrasound showed that I was having my first daughter, the jubilation from the gals in my Step class, and the anticipation of dressing her in PINK, of putting bows in her hair. Today she came home from school with a baseball cap and jeans on, but she also likes pink...
She is still hurting from the car accident she was in January, the driver of teh car overturned and hit a tree. Her knee keeps getting inflamed and she is currently undergoing PT for bursitis and tendinitis. The PT thinks her meniscus is injured, and believes that her therapy will fail and she will need her knee scoped to check for soft tissue injury, I hope she is wrong, I really do.
Amanda has finally decided that drinking water is not all that terrible, I wondered when the incredibly hot Tucson summers would get to her. She does prefer lemonade to water though. We are so excited about her progress with drinking, I have been able to get her to give herself water 5 days in a row now, unheard of a month ago. Now to work on self-feeding, she is still refusing to hold her own spoon. One small step at a time, any bit of progress is celebrated here.
Julia 2001, The main difference between Julia and Meghan? Julia has her dad's eye shape and Meghan has mine. Yes, I also have almond shaped eyes, it is a family trait, only Meghan has eyes like mine. That includes the dark circles and baggies LOL. I always had them; bad allergies to my dad smoking, and no, no one smokes here.
Wednesday, August 4, 2010
Feeling a bit more hopeful about school this year
We enrolled all three girls in school this year, online charter, not a brick and mortar school. I was worried about Amanda; she does not have academic skills to speak of and is very young developmentally. What would she get out of school?
Last spring I spoke to the school about our concerns about the current curriculum, it truly had to modified to such a degree that the books were useless. I found myself going to my homeschooling list serv and wishing wistfully for regular homeschooling with our own curriculum. Those parents seem to have the answers, AZVA did not want to listen. I was extremely frustrated.
A few weeks ago we did an interim IEP for Kara and Amanda, it will be in place until October. Because their last IEP was done when they were pre-school aged, they both need to see a psychiatrist to have their eligibility to receive special education services reaffirmed. Some typical children with speech delay often will not need additional services in Kindergarten, though states likely retest to save money, who are we kidding. :P Even though we find it silly, you have to follow the rules right? We have no doubt that Kara and Amanda still have Down syndrome with significant delays, Amanda still has autism too...This gentleman will meet us at a neutral place and evaluate their girls strengths and weaknesses. With Kara he may be able to get a clearer idea of what she can do, Amanda on the other hand will likely go into her "I do not like strangers" mode, drop her head and ignore him. Depends on how friendly or engaging this man will be.
Last month Tom and I "attended"the IEP via conference call with the team, the drafts of the IEP's viewed on an Elluminate screen. Just one of the peculiarities of on-line schooling, all of the team live in the Phoenix area and getting together in a room was not an option.
They asked us if we thought Kara would be able to write her name by October? What? We said no way, they said what about a K? Sigh, no, Kara is in the pre-writing phase of development, of course we would love it if she could do this, but not even Meghan can write her name yet. (This year, it has to happen this year)
Amanda is very delayed, and no one could figure out an academic goal for her. We all decided working on attention span and eye contact would be a step in the right direction for Amanda.
Prior to the IEP we received the girls curriculum and I was very disappointed to see the books were basically the same as last year, with very minor differences. I knew at once that none of the girls could do anything on those pages, and being emotional I just started crying. I was told that some things were changing this year, and I was so excited about it. Work pages that our girls could do, YES! Alas, NO was the answer.
In my frustration I complained to the special ed teacher who called to set up the IEP drafts and she said "Perhaps you should just send them to a brick and mortar self-contained classroom". I told her I felt her comments were out of line and insulting, I believed that if the school accepted children with special education needs, then that school should accommodate the children with a usable curriculum. She was a bit flustered, I could tell, she said that they were working on a self contained type of online classroom for their kids in special ed. Of course I was thinking, strange, they are schooled at home, how will that work exactly?
Today their self contained classroom teacher called me and said we were going to be able to use a different curriculum for the girls. There is a program for children with autism we can utilize, I cannot recall what she called it, my memory sometimes, oh boy. Even though Meghan and Kara do not have a diagnosis of autism, schools have had success with the program for children with various diagnosis. She was also very excited to tell me that we will be getting Edmark reading program for our children this year. We had used Zoo Phonics, regular phonics, and none of these are working, so I am hopeful the program will provide us with the breakthrough we have been hoping for.
The little girls start school on Friday, I will check back and let folks know how they are doing, I am certain I will do some mommy whining along the way. Fingers crossed we have a good year.
Forgive and forget?
My heart is pretty heavy today, happenings of the last week have wounded me; re-opening old wounds. Through this journey into the past, I re...
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This year was special to all of us; both of our new daughters were finally together from Ukraine and Estonia and all of our children were ab...
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Only one accident in our potty trained girlie. So yea, it took 8 years, but by golly, this girl is a panty wearing big girl now! She ate ha...
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My heart is pretty heavy today, happenings of the last week have wounded me; re-opening old wounds. Through this journey into the past, I re...