I was going to my blogs to read others and I realized, I have not posted for a while. Not since the Gladys K post, and I thought, goodness, they probably think we are holed up in a safe room...we are all fine, the ruckus of late has thankfully died down in our neighborhood, maybe because a few of us keep patrol cars coming about. I am of the mind that if you sit back and do nothing, then crime can get out of hand quickly. Then again, do I want to be the neighborhood snitch? It sure is a fine line to walk. I choose safety over that concern.
Since we posted last Kara and Amanda were evaluated by a developmental pediatrician, now I had thought this would be an intense evaluation, maybe them sitting with the girls and seeing how they played, interacted, etc. It was mostly a question and answer session, just like the other evaluations we have had.
What we determined was Amanda will need autism screening in July, we will give her a few more months here, and then she will have a two hour screening to determine whether or not she has autism. The current thoughts are, yes, there is something going on there (my words, not theirs) and yes we need to make certain we cover every base. Amanda has come a long way, but she continues to withdraw, has issues with eye contact, and her self stim behaviors remain in place despite loving attention.
Then it was Kara's turn, and beyond a doubt her lack of speech needs to be addressed. We got a script for a speech evaluation, it will be turned in to the SC after we make a copy, since they seem to get lost an awful lot. Kara is 100% non-verbal with about 8 signs, not good enough for full communication. We are looking into picture cards, but we believe she will have to learn their meaning first, and that too will take some time. How much receptive language does Kara understand? We are not certain, but she follows simple instructions. We know she is pretty smart, she just cannot communicate verbally.
Julia was in Willy Wonka on Thursday and Friday, we saw the play on Friday, it was really cute and the kids did a good job. Julia was Violet's mom. Personally I would have liked to be an Oopma Loompa! That looked like fun. Julia was pretty pooped out from the intensive rehearsals, and is probably glad to have that behind her.
Our oldest sons Fred and Terry were both very ill with the flu, this year has been brutal for all of us. thankfully they are recovering.
Eric was in a mini triathlon at the U of A this past weekend. Not sure how he did yet, but I look forward to hearing about it. It is nice that at least one of our children followed me in the fitness arena, I sure do miss working out like I used to.
We got to see Brian last week, he is taking a break from plays and has more time to visit. It was really nice to have him over for Amanda's birthday.
We are still a little bummed that the U of A basketball team is out of the basketball championships. As Tom put it, they had their butts handed to them, losing by a huge margin. We were hoping they could win again, especially since the coach of 25 years; Lute Olson, is retiring this year due to health issues.
Dad, Mom, and baby Meghan
Monday, March 30, 2009
Monday, March 23, 2009
I think I am becoming Gladys Kravitz.
For the last few weeks we have had issues in our neighborhood with home and car break-ins, theft, and guns going off in the middle of the night. Things have been bad since the woman one door away disappeared Valentines Day 2008. Kay was never found, she was a retired schoolteacher and Sunday School teacher and was disabled by polio she had a a child. They found her minivan on fire down the street, but never found her. None of us can believe someone would ever want to hurt Kay, she was a very nice woman, feeding stray cats in the neighborhood, something I saw her do every morning for years, and maybe it was because of her regimented schedule that someone targeted her? or maybe she saw something she should not have?
Needless to say, I have not felt safe here since then, I keep my doors locked during the day and do not open it for anyone unless they are friends or family. At night I have trouble falling asleep, nothing new there, I am a longtime insomniac, but it has been especially bad since the gunshots became part of our evenings these past few months. I thought it was just me, but both my next door neighbors have heard them numerous times. I always call the police, and apparently my neighbors have been too. One morning at 1 AM I heard a police helicopter flying over my house, I could see the beacon shining in my back yard, talk about feeling vulnerable. I called the police and asked them if I should be concerned, they told me to stay inside and away from the windows. Oh gee thanks officer.
No one has ever been hurt, besides Kay anyway, no one ever told us who or why guns are being fired, and all of us are confused about what is happening. We vowed to watch out for one another. We do it anyway, it became a habit for Tom and I years ago when we were in the VIP program.
Tom and I were part of Volunteers in Prevention in the late 90's and early 2000, it is a Neighborhood Watch program with volunteers who drove around the neighborhood making sure everything was OK. Tom and I had the 10-2 AM shift on Saturday nights. It was a good time to talk, and sometimes the older kids would want to come with us, a no no, but they loved shining the one million candle power spotlight into the surrounding desert and watching rabbits freezing in it's light. We sometimes chased teenagers out of closed city parks. they were usually doing two things, either making out (or worse) or drinking, but we never encountered anything scary or dangerous, and quit because a control crazy gal took over running the program and she made it too hard to be part of it.
I was up near midnight last week and saw a gang of teenagers hanging out behind my house. Sophie, our Chow-Golden Retriever mix, was going crazy growling, barking, and throwing herself against the sliding door and I looked out back to see why. there were 9 kids, one talking to a person in a white sedan, just hanging out on a school night, it was 11:45. In lieu of the issues the neighborhood is having, I thought it would be prudent to call the police, I stood in the backyard looking at the kids as I dialed. They saw me on the phone and sidled away. They walked to a house 5 doors away, went inside and shut off all of the lights. I had a lot of trouble sleeping that night.
I have called 911 around midnight at least 4 times in the last month, I wonder if they have me down on a list somewhere as a local lunatic? I guess Sue and Anna are on the list too then.
Please pray for our neighborhood, it is unsettling to live here right now, it was always such a good place before, at least no more dangerous than any other place, now, it does not feel safe any longer at night, during the day it is OK, plenty of people out, kids playing...
Needless to say, I have not felt safe here since then, I keep my doors locked during the day and do not open it for anyone unless they are friends or family. At night I have trouble falling asleep, nothing new there, I am a longtime insomniac, but it has been especially bad since the gunshots became part of our evenings these past few months. I thought it was just me, but both my next door neighbors have heard them numerous times. I always call the police, and apparently my neighbors have been too. One morning at 1 AM I heard a police helicopter flying over my house, I could see the beacon shining in my back yard, talk about feeling vulnerable. I called the police and asked them if I should be concerned, they told me to stay inside and away from the windows. Oh gee thanks officer.
No one has ever been hurt, besides Kay anyway, no one ever told us who or why guns are being fired, and all of us are confused about what is happening. We vowed to watch out for one another. We do it anyway, it became a habit for Tom and I years ago when we were in the VIP program.
Tom and I were part of Volunteers in Prevention in the late 90's and early 2000, it is a Neighborhood Watch program with volunteers who drove around the neighborhood making sure everything was OK. Tom and I had the 10-2 AM shift on Saturday nights. It was a good time to talk, and sometimes the older kids would want to come with us, a no no, but they loved shining the one million candle power spotlight into the surrounding desert and watching rabbits freezing in it's light. We sometimes chased teenagers out of closed city parks. they were usually doing two things, either making out (or worse) or drinking, but we never encountered anything scary or dangerous, and quit because a control crazy gal took over running the program and she made it too hard to be part of it.
I was up near midnight last week and saw a gang of teenagers hanging out behind my house. Sophie, our Chow-Golden Retriever mix, was going crazy growling, barking, and throwing herself against the sliding door and I looked out back to see why. there were 9 kids, one talking to a person in a white sedan, just hanging out on a school night, it was 11:45. In lieu of the issues the neighborhood is having, I thought it would be prudent to call the police, I stood in the backyard looking at the kids as I dialed. They saw me on the phone and sidled away. They walked to a house 5 doors away, went inside and shut off all of the lights. I had a lot of trouble sleeping that night.
I have called 911 around midnight at least 4 times in the last month, I wonder if they have me down on a list somewhere as a local lunatic? I guess Sue and Anna are on the list too then.
Please pray for our neighborhood, it is unsettling to live here right now, it was always such a good place before, at least no more dangerous than any other place, now, it does not feel safe any longer at night, during the day it is OK, plenty of people out, kids playing...
Saturday, March 21, 2009
A beautiful day-some pictures of the early spring garden
Meghan loves roses as much as I do, most are in the bud stage, but these old garden roses bloom first. I got it a decade ago at a mystery bare root rose sale. It is a bluish pink rose. Meghan's alopecia is in fall out mode, half of her hair has been lost to it, thankfully the top is still growing and the bald spots are under it.
What a face huh? Meghan makes us laugh, she can make some goofy faces, and she is always laughing after she does. I think she looks confused here, even added a nervous nibble of her lower lip.
Speaking of funny faces, look at scrappy little Amanda. She loves to fold herself into compact positions. It was 90 yesterday, she is in her summer duds. Amanda turns 4 next Thursday, she looks like a 2 year old! She acts like a 8 month old, and she is so precious. Kara was napping, she is fighting a cold, I hope to get some pictures of her tomorrow. Her nose is so runny, all her pictures feature boogers. LOL She is miserable, I am so sad for her, she has been fighting a cold for a while, it waxes and wanes, but never goes away.
Another picture of the old garden rose, this one bloomed yesterday, still a dark bluish pink. It fades and becomes more variegated as the bloom ages. there is a picture of an older bloom below.
My second old garden rose, this one has smaller blooms, and is a climbing rose (probably a rambler, I have it staked to a arbor) It was another mystery rose, it looks like Blue Star, but who knows for certain. I am no expert. :o)
My pink geraniums (not a true geranium really) They are "common" flowers, but I love their vibrant blooms. This was taken on with the Macro Zoom function on my Fuji. It looks like it is floating in midair.
Another common plant in hot areas, the Lantana, this bush is over 10 years old, produces black berries that are toxic if eaten before they are ripe, so we cannot have the girls around them, not that they would go near them anyway. I do not like pruning them, the stems are full of sharp but fine hairlike thorns, they are very difficult to remove one they are in your skin. They also cause allergic reactions in most people. Rabbits hate them, so it is a good plant to use in AZ if there are lots of rabbits. Javelinas will eat anything. thankfully we do not have any of them near us, or I would not have a garden any longer.
One of the Cherubs from my non-working fountain.
An older bloom of my first mystery rose. The color is unique, the camera always changes it to more of a pink rose than it truly is. It has an unbelievable fragrance, it smells like a rose should smell. Tea roses do not come close to this fragrance!
I just could not leave Kara out of our pictures for today, so here she is, boogery nose and all. She feels better tonight, not as tired or whiny, but getting those crusty boogers off her nose is a monumental task. She hates it, fights like a bear, and ends up sobbing. Guess we will get most of it off in her bath.
I just could not leave Kara out of our pictures for today, so here she is, boogery nose and all. She feels better tonight, not as tired or whiny, but getting those crusty boogers off her nose is a monumental task. She hates it, fights like a bear, and ends up sobbing. Guess we will get most of it off in her bath.
A typical Kara fashion statement, she knows how to pull a top over her head, but can;t seem to get her arms in the sleeves. She walks around like this all the time. We are trying to let her self-dress. :o)
World Down Syndrome Day
The logo is from this organization: http://www.worlddownsyndromeday.org/index.htm
My one wish and prayer; for international institutions to no longer exist.
My dream; to see children and and adults with Down syndrome walking in crowds in Ukraine and Estonia (and throughout Europe and Asia), and not shut away where no one knows of their existence, hidden in a building they can never leave, where they receive no special therapy, and many stay in bed all day. Imprisoned with no chance to lead a fulfilling life.
For America my wish; that the government stops paying lip service to children and adults with developmental disabilities; that they cease the massive budget cuts that take programs away from the people who desperately need them. We used to do things better here than most of the worlds countries, but I believe we are heading down a slippery slope with the cuts in funding. We cannot allow these drastic changes to occur in the lives of people who truly need the help to have a chance for independent living.
Monday, March 16, 2009
Happy St Patricks Day
Read about the legend of St. Patrick
St. Patrick
May St. Patrick guard you wherever
May St. Patrick guard you wherever
you go and guide you in
whatever you do--and may his loving
protection be a blessing to you always.
I am part Irish, and would love to see Ireland some day, on our way home from Ukraine, Kara and I sat with a young woman who had gone to school for 6 months in Ireland. She stayed in Galway, where I was told my family was from centuries ago.
Meghan today
Thursday, March 12, 2009
Preliminary Injunction to protect services for people with developmental disabilities granted
It is a good day in Arizona for thousands of families and early interventionists.
Please read the PDF for the whole story, I am so thankful for this and I am continuing to pray that the state will use the federal monies allotted for DDD services, to continue early intervention for Arizona's children.
Please remember that this is temporary, our fight is not over yet. Please continue contacting the governors office and your state respresentatives.
You can find the contact information here: Arizona Center fo Disability Law
Please read the PDF for the whole story, I am so thankful for this and I am continuing to pray that the state will use the federal monies allotted for DDD services, to continue early intervention for Arizona's children.
Please remember that this is temporary, our fight is not over yet. Please continue contacting the governors office and your state respresentatives.
You can find the contact information here: Arizona Center fo Disability Law
Wednesday, March 11, 2009
We need to keep the pressure on -DDD-DES- AZEIP budget cuts
From a fellow member of this Yahoogroup:
Here's what we need to do:
1. Everyone needs to call OSEP 202-245-7549
This is Patty Guard's number, she is the acting director for OSEP (the office of special education programs in the department of education).
Tell her you are from Arizona, your child has an IFSP under Part C and your services have been ____________ . Tell her how your procedural safeguards have not been enforced ____________ _________ _____ and that you expect OSEP to assist Arizona in understanding the assurances it made when it took the $9.9 million in federal dollars to administrate this program.
2. Call the Governor's office with calls, tell her you cannot believe that providing essential supports and services to children and adults with disabilities was not included in the latest round of budget negotions for FY 2009.
3. Call your Congressmember and tell them to tell OSEP to stop watching what' s happening in Arizona and get INVOLVED. Tell them to tell Arizona that they cannot violate children's procedural safeguards, that eliminating services to children who have legally binding IFSPs is illegal and OSEP must tell Arizona to enforce your child's IFSP.
4. Again call your local legislators and tell them they must restore these services ASAP,(Remember your child's IFSP is to be individualized and based on your family's priorities, concerns and resources and that all decisions to changes services must be made by the TEAM, which includes you as your child's parents, you are to be provided Prior Written Notice, before any proposed change and you have the right to dispute resolution if you disagree with any proposed change and you have the right to pendancy (your previously agreed upon services continue during the dispute resolution process).
Send your letters to:
CC:
DES/AzEIP - disputes
3839 N 3rd St, Suite 304
Phoenix, AZ 85016
DDD Compliance and Review Unit
1789 W Jefferson
Phoenix, AZ 85007
Peri Jude Radecic - AzEIP disputes
Arizona Center for Disability Law
5025 E Washington St, Suite 202
Phoenix, AZ 85034
Here's what we need to do:
1. Everyone needs to call OSEP 202-245-7549
This is Patty Guard's number, she is the acting director for OSEP (the office of special education programs in the department of education).
Tell her you are from Arizona, your child has an IFSP under Part C and your services have been ____________ . Tell her how your procedural safeguards have not been enforced ____________ _________ _____ and that you expect OSEP to assist Arizona in understanding the assurances it made when it took the $9.9 million in federal dollars to administrate this program.
2. Call the Governor's office with calls, tell her you cannot believe that providing essential supports and services to children and adults with disabilities was not included in the latest round of budget negotions for FY 2009.
3. Call your Congressmember and tell them to tell OSEP to stop watching what' s happening in Arizona and get INVOLVED. Tell them to tell Arizona that they cannot violate children's procedural safeguards, that eliminating services to children who have legally binding IFSPs is illegal and OSEP must tell Arizona to enforce your child's IFSP.
4. Again call your local legislators and tell them they must restore these services ASAP,(Remember your child's IFSP is to be individualized and based on your family's priorities, concerns and resources and that all decisions to changes services must be made by the TEAM, which includes you as your child's parents, you are to be provided Prior Written Notice, before any proposed change and you have the right to dispute resolution if you disagree with any proposed change and you have the right to pendancy (your previously agreed upon services continue during the dispute resolution process).
Send your letters to:
CC:
DES/AzEIP - disputes
3839 N 3rd St, Suite 304
Phoenix, AZ 85016
DDD Compliance and Review Unit
1789 W Jefferson
Phoenix, AZ 85007
Peri Jude Radecic - AzEIP disputes
Arizona Center for Disability Law
5025 E Washington St, Suite 202
Phoenix, AZ 85034
DDD cuts were not repealed, though child care subsidies are safe
Shame on Governor Brewer, Shame on Arizona.
It's a deal! Brewer, GOP to fix child care, other '09 cuts
Wednesday, 11 March 2009 14:30 Mary K. Reinhart
Legislative leaders and Gov. Jan Brewer have reached a deal to restore child care funding and about $40 million worth of other items whacked in the mid-year budget fix, including cuts to hospital programs and illegal funds transfers.
The House and Senate appropriations committees will consider a strike-everything amendment Thursday to make the changes, a reprieve for some 15,000 children who would be kicked off the child care rolls this weekend.
“I can almost hear the collective sigh of relief from 10,000 parents who hopefully are going to learn tomorrow that they can go to work on Monday and still take care of their kids,” said Bruce Liggett, executive director of the Arizona Child Care Association.The bill, which was being drafted Wednesday afternoon, will backfill $24 million in cuts to the child care subsidy program with $18.2 million in federal stimulus funding. The remainder is expected to be covered with emergency funding from the First Things First early childhood development fund.
The proposed amendment to SB 1184 also restores $16.5 million in cuts to hospital programs that received federal matching funds, including $5 million for graduate medical education and $9 million for hospitals that serve a disproportionate share of low-income patients.
The bill also will reverse funds transfers that have been challenged as beyond the Legislature’s authority, including $2 million from the Arizona Power Authority and smaller grabs from agriculture and environmental funds.And the measure will return about $12.2 million of the $30 million in state-shared revenues that the Legislature took from cities and towns to balance the budget in the first round of cuts last summer.
Off the table for now is repeal of the statewide property tax, which Republicans had hoped to bring to a vote separate from the 2010 budget. Brewer told legislative leaders during a Tuesday afternoon meeting that she wanted the measure to be part of a comprehensive budget package, not piecemeal.
Senate President Bob Burns said Wednesday that the bill would not include funding to restore cuts to the Division of Developmental Disabilities. A Maricopa County Superior Court judge is expected to issue a temporary restraining order Wednesday afternoon to prevent those cuts, but Burns said the matter can be handled as part of the 2010 budget.
“What we attempted to do was to narrow it down to those issues which we felt were unwinnable,” he said of the budget-fix bill. “I believe we have the votes.”
The child care issue erupted this week as families were notified that they would lose their subsidies by Saturday. Thousands of parents and child care providers called and emailed Brewer and legislators, fearing that they would lose their jobs or be forced to leave their children home alone.
In her budget speech last week, Brewer asked lawmakers to use part of the $50 million in federal stimulus funding to restore the child care cuts by the weekend. But legislative leaders balked, saying the Department of Economic Security could continue to pay the bills while they worked out other 2009 budget fixes.
Legislators cut the Department of Economic Security by $150 million as part of the $1.6 billion midyear budget reductions. The department spends about $1.5 million a week for state-federal child car e subsidy program.
Under the budget cuts, working families earning more than 110 percent of the federal poverty level will no longer qualify for child care subsidies, which are paid on a sliding scale for about 45,000 children. Co-payments also will be increased, and provider rates reduced.
DES began a waiting list last month that already includes several hundred families and is expected to grow to more than 5,000 children by June 30.
It’s unclear whether the $18 million in the budget fix will be enough to restore provider rates, prevent co payment increases and eliminate the waiting list.Under the stimulus package, Arizona is in line to get about $25 million in additional federal child care money this year and another $25 million for 2010.
It's a deal! Brewer, GOP to fix child care, other '09 cuts
Wednesday, 11 March 2009 14:30 Mary K. Reinhart
Legislative leaders and Gov. Jan Brewer have reached a deal to restore child care funding and about $40 million worth of other items whacked in the mid-year budget fix, including cuts to hospital programs and illegal funds transfers.
The House and Senate appropriations committees will consider a strike-everything amendment Thursday to make the changes, a reprieve for some 15,000 children who would be kicked off the child care rolls this weekend.
“I can almost hear the collective sigh of relief from 10,000 parents who hopefully are going to learn tomorrow that they can go to work on Monday and still take care of their kids,” said Bruce Liggett, executive director of the Arizona Child Care Association.The bill, which was being drafted Wednesday afternoon, will backfill $24 million in cuts to the child care subsidy program with $18.2 million in federal stimulus funding. The remainder is expected to be covered with emergency funding from the First Things First early childhood development fund.
The proposed amendment to SB 1184 also restores $16.5 million in cuts to hospital programs that received federal matching funds, including $5 million for graduate medical education and $9 million for hospitals that serve a disproportionate share of low-income patients.
The bill also will reverse funds transfers that have been challenged as beyond the Legislature’s authority, including $2 million from the Arizona Power Authority and smaller grabs from agriculture and environmental funds.And the measure will return about $12.2 million of the $30 million in state-shared revenues that the Legislature took from cities and towns to balance the budget in the first round of cuts last summer.
Off the table for now is repeal of the statewide property tax, which Republicans had hoped to bring to a vote separate from the 2010 budget. Brewer told legislative leaders during a Tuesday afternoon meeting that she wanted the measure to be part of a comprehensive budget package, not piecemeal.
Senate President Bob Burns said Wednesday that the bill would not include funding to restore cuts to the Division of Developmental Disabilities. A Maricopa County Superior Court judge is expected to issue a temporary restraining order Wednesday afternoon to prevent those cuts, but Burns said the matter can be handled as part of the 2010 budget.
“What we attempted to do was to narrow it down to those issues which we felt were unwinnable,” he said of the budget-fix bill. “I believe we have the votes.”
The child care issue erupted this week as families were notified that they would lose their subsidies by Saturday. Thousands of parents and child care providers called and emailed Brewer and legislators, fearing that they would lose their jobs or be forced to leave their children home alone.
In her budget speech last week, Brewer asked lawmakers to use part of the $50 million in federal stimulus funding to restore the child care cuts by the weekend. But legislative leaders balked, saying the Department of Economic Security could continue to pay the bills while they worked out other 2009 budget fixes.
Legislators cut the Department of Economic Security by $150 million as part of the $1.6 billion midyear budget reductions. The department spends about $1.5 million a week for state-federal child car e subsidy program.
Under the budget cuts, working families earning more than 110 percent of the federal poverty level will no longer qualify for child care subsidies, which are paid on a sliding scale for about 45,000 children. Co-payments also will be increased, and provider rates reduced.
DES began a waiting list last month that already includes several hundred families and is expected to grow to more than 5,000 children by June 30.
It’s unclear whether the $18 million in the budget fix will be enough to restore provider rates, prevent co payment increases and eliminate the waiting list.Under the stimulus package, Arizona is in line to get about $25 million in additional federal child care money this year and another $25 million for 2010.
News on DDD-DES-AZEIP-Rally in Tucson Friday
This blog:http://uponeagleswings.blogspot.com/2009/03/ddd-update.html has information concerned parents will want to know.
If you live in Tucson, we have another rally on Friday the 13th from 10am-12pm in support of parents whose infants and toddlers lost AZEIP services. The rally will be held at Reid Park in Ramada 7. I plan on getting the girls dressed and out there to support all of the families who lost services.
Here is a local news story about how the budget cuts affect some of our children:
http://www.kold.com/Global/story.asp?S=9947497
We are lucky that our girls get federal funding for their therapy. They are older children, and this is why all three qualified for AZ long term care. Meghan was lucky to have her early intervention services, and we were lucky to have Maria, Judy, Pam, and Aida here for her. With their help and guidance, we were able to do so much more for Meghan than we ever could have done by ourselves. They were all experienced, caring, and well educated. It is insane to think that parents can read a book and do what trained therapists do with our kids.
I know that Meghan would not be where she is now without her early intervention team in her life. Compare Meghan to her two little sisters, girls adopted from special needs orphanages. We know Kara's orphanage did some play therapy with her, she is great at puzzles and has good problem solving skills. We know Amanda's orphanage had good equipment, but are uncertain about therapy for her. Neither one of the were walking when we adopted them, Kara began walking all the time last Christmas; she was 4, Amanda is no where near ready to walk, she will be 4 this month. I am certain that if both girls had the proper support and therapy that walking would not have been one of their biggest delays.
Kara cannot talk and knows very little sign, she should have had speech therapy a long time ago, but did not. We are trying to make up for that, but she had to unlearn Russian and learn English, and that takes time, average of 6-12 months. I know they tried to help Kara talk, but without the therapists we take for granted here (until the budget cuts) the caregivers did not know how to help her, Kara could not chew her food when we adopted her, she could not swallow without gulping and she choked all the time, and she had no idea how to feed herself. She has changed so much since being home, with the tools we gained from Meghan's therapy and advice from Meghan's ST, we helped Kara.
Amanda is a babbler, she can say Dada and Mama 70% of the time. Her gross motor skills are delayed, so much so, she tests below 1 percentile for her age. Her muscles are underdeveloped and weak, and PT would have helped her get stronger.
Amanda has many issues, not all of them associated with Down syndrome, but also with Aniridia. She also has torticollis ( we are sure it was more severe as an infant, she always drops her head to the left, the side of her head that is flat) the PT who evaluated her last month felt it caused her positional plagiocephaly. If Amanda had early intervention, both could have been addressed in her infancy. She would not have the asymmetry to her skull. Now that she is almost 4, nothing except surgery can correct Amanda's skull shape, and unless it is causing her neurological issues, we will not consider it.
We spoon feed Amanda, she has no interest in feeding herself at this time, she cannot chew and has a very difficult time moving her food to the back of her mouth to swallow it.
Yes, with a diagnosis of Down syndrome we can expect global delay, Kara and Amanda did not get the therapy Meghan did, you can tell that they did not. When I fist met Kara I was shocked by her extreme delay, she seemd like an infant to us, her development that of a baby under a year old. In some European countries, they do not believe children with disabilities have a chance of a future, they see their disability and declare that they are oligophrenic (Greek for small brained) Because of that belief, the children are not taught to do anything, very little is expected out of them, and they are left alone all too often.
I saved this link from a email log of a woman who visited Russia and the special needs orphanages and institutions there. Her name is Sarah Settelen and she and therapists from England work with special needs orphans.
http://www.elliesettelen.net/sushki.htm is her email archive from her initial visit.
Watch the VIDEO, and see, really SEE how the lack of therapy affects our children with special needs, and watch to the end, and see the amazing progress that can be made with the attention, care and constancy of a loving caregiver using therapy to help the children in her charge. No, children like Meghan with loving parents do not suffer the neglect these children did, and yes, that neglect also contributes to the extreme delays you see in institutionalized children, but the video is telling too, because many of our children born with disabilities were in places very much like this 30 years ago. The children did not learn more simply because the caregivers did not think they could do anything, both here and in other countries. Once the caregivers were shown techniques to help, and each child was given one on one attention, they made tremendous progress, but what was lost in their very early years, who could they have been with early intervention?
What concerns me about our budget cuts is the message it sends to me and mothers like me, it says that our government also believes our children have no future, so why bother? Why else would they pull funding? It hurts me to the core that they would have so little regard for the children who need their help the most. I cannot help but be flabbergasted by the program cuts.
I wrote this quickly, Amanda is awake and ready to eat breakfast and I lost my train of thought, so sorry if I was rambling. The life of a mom!
If you live in Tucson, we have another rally on Friday the 13th from 10am-12pm in support of parents whose infants and toddlers lost AZEIP services. The rally will be held at Reid Park in Ramada 7. I plan on getting the girls dressed and out there to support all of the families who lost services.
Here is a local news story about how the budget cuts affect some of our children:
http://www.kold.com/Global/story.asp?S=9947497
We are lucky that our girls get federal funding for their therapy. They are older children, and this is why all three qualified for AZ long term care. Meghan was lucky to have her early intervention services, and we were lucky to have Maria, Judy, Pam, and Aida here for her. With their help and guidance, we were able to do so much more for Meghan than we ever could have done by ourselves. They were all experienced, caring, and well educated. It is insane to think that parents can read a book and do what trained therapists do with our kids.
I know that Meghan would not be where she is now without her early intervention team in her life. Compare Meghan to her two little sisters, girls adopted from special needs orphanages. We know Kara's orphanage did some play therapy with her, she is great at puzzles and has good problem solving skills. We know Amanda's orphanage had good equipment, but are uncertain about therapy for her. Neither one of the were walking when we adopted them, Kara began walking all the time last Christmas; she was 4, Amanda is no where near ready to walk, she will be 4 this month. I am certain that if both girls had the proper support and therapy that walking would not have been one of their biggest delays.
Kara cannot talk and knows very little sign, she should have had speech therapy a long time ago, but did not. We are trying to make up for that, but she had to unlearn Russian and learn English, and that takes time, average of 6-12 months. I know they tried to help Kara talk, but without the therapists we take for granted here (until the budget cuts) the caregivers did not know how to help her, Kara could not chew her food when we adopted her, she could not swallow without gulping and she choked all the time, and she had no idea how to feed herself. She has changed so much since being home, with the tools we gained from Meghan's therapy and advice from Meghan's ST, we helped Kara.
Amanda is a babbler, she can say Dada and Mama 70% of the time. Her gross motor skills are delayed, so much so, she tests below 1 percentile for her age. Her muscles are underdeveloped and weak, and PT would have helped her get stronger.
Amanda has many issues, not all of them associated with Down syndrome, but also with Aniridia. She also has torticollis ( we are sure it was more severe as an infant, she always drops her head to the left, the side of her head that is flat) the PT who evaluated her last month felt it caused her positional plagiocephaly. If Amanda had early intervention, both could have been addressed in her infancy. She would not have the asymmetry to her skull. Now that she is almost 4, nothing except surgery can correct Amanda's skull shape, and unless it is causing her neurological issues, we will not consider it.
We spoon feed Amanda, she has no interest in feeding herself at this time, she cannot chew and has a very difficult time moving her food to the back of her mouth to swallow it.
Yes, with a diagnosis of Down syndrome we can expect global delay, Kara and Amanda did not get the therapy Meghan did, you can tell that they did not. When I fist met Kara I was shocked by her extreme delay, she seemd like an infant to us, her development that of a baby under a year old. In some European countries, they do not believe children with disabilities have a chance of a future, they see their disability and declare that they are oligophrenic (Greek for small brained) Because of that belief, the children are not taught to do anything, very little is expected out of them, and they are left alone all too often.
I saved this link from a email log of a woman who visited Russia and the special needs orphanages and institutions there. Her name is Sarah Settelen and she and therapists from England work with special needs orphans.
http://www.elliesettelen.net/sushki.htm is her email archive from her initial visit.
Watch the VIDEO, and see, really SEE how the lack of therapy affects our children with special needs, and watch to the end, and see the amazing progress that can be made with the attention, care and constancy of a loving caregiver using therapy to help the children in her charge. No, children like Meghan with loving parents do not suffer the neglect these children did, and yes, that neglect also contributes to the extreme delays you see in institutionalized children, but the video is telling too, because many of our children born with disabilities were in places very much like this 30 years ago. The children did not learn more simply because the caregivers did not think they could do anything, both here and in other countries. Once the caregivers were shown techniques to help, and each child was given one on one attention, they made tremendous progress, but what was lost in their very early years, who could they have been with early intervention?
What concerns me about our budget cuts is the message it sends to me and mothers like me, it says that our government also believes our children have no future, so why bother? Why else would they pull funding? It hurts me to the core that they would have so little regard for the children who need their help the most. I cannot help but be flabbergasted by the program cuts.
I wrote this quickly, Amanda is awake and ready to eat breakfast and I lost my train of thought, so sorry if I was rambling. The life of a mom!
Friday, March 6, 2009
Blog with sample of appeal form for AZEIP services termination
Please go to the blog below, none of us should go quietly into the night, if the state can find funds for child care, they can find funds for early intervention too.
http://uponeagleswings.blogspot.com/2009/03/for-those-appealing-desddd-letters_06.html
http://uponeagleswings.blogspot.com/2009/03/for-those-appealing-desddd-letters_06.html
Thursday, March 5, 2009
Pictures for March
No, my girls are not always happy! Kara was mad that I was taking Amanda's picture, yes, honestly, she loves having her picture taken, and does not love to wait to see herself in the view screen.
Can you believe it is March here? most of our trees are not deciduous, so they stay pretty green, albeit a lighter color, all winter. Behind Meghan is a California Pepper. The huge Mesquite has already begun to drop its leaves, the ground is littered with them, tiny bits of pale green and yellow everywhere. The Sumac sheds it's leaves three times a year. None of these trees are native to Tucson, and all of them are tough on plumbing and pipes. None can be purchased in Tucson any longer save the Mesquite. If I had know the Sumac was such a messy tree, i would not have planted it 16 years ago.
I have waited two weeks to see Meghan smiling and with some color to her face and lips. She was so sick, I got a little scared. In a minute, everything can change, I am even more aware of it now than I was 10 years ago. So even though I knew she would be OK eventually, I was scared.
Amanda "Gene Simmons" and her far reaching tongue!
You can see Kara's rash pretty clearly here. Isn't she a silly goose, she is such a lovable girl, since she was so ill, she has a renewed interest in cuddling with mommy, I am so glad she is letting me hold her close again. For a time, she was mad at me for giving Amanda too much attention, I think balancing one on one time with kids is the most difficult challenge a parent has. I do not want any of my children to feel left out, but sometimes one of them needs me more than the others.
Yikes, what a tongue, all three girls can get their tongues WAY out there. Contrary to what people think, the girls do not have large tongues; they have tiny mouths with normal sized tongues. They also have a very narrow roof of mouth and their tongues do not sit well in their mouths like a typical persons does. Just thought I would mention that. :o)
Kara is definitely feeling better, but her viral rash has spread all over her little body. She had the same rash when we came home from Ukraine, both of us break out when we get sick I guess. At least she is up, walking, smiling, and no longer whining all day. PTL!
A kiss for Da (Amanda's name, as said by Meghan) I kept trying to get a good picture of Amanda, but she kept climbing into my lap, how could I complain about that?
Can you hear me singing the oompa loompa song? Amanda is almost orange from beta carotene in her food, for a while it was getting better, but egads, my girls is orange. The whites of her eyes are the purest white, the doctor does not believe it is related to liver issues, but I truly wish he would order a liver panel on her, just to make mommy feel better...
Wednesday, March 4, 2009
Video on Phoenix rally-more on DES-DDD-AZEIP budget cuts
If the video will not load, go here: VIDEO
I listened to what one representative said, "I knew it would affect families and children with disabilities, but we had no choice" surely they DID have a choice; they chose to do this anyway. I do not think there was a lot of thought into what to cut. I would bet there were superfluous programs that could have been cut instead. What worries me, upsets me considerably is this; I have not seen one news program covering this in Tucson since the DES offices let people go, I am very discouraged that our ABC, NBC, FOX, and CBS affiliates do not think something this HUGE is not newsworthy. Maybe I missed the reports, but I have to think that my friends would forward them to me, and I have not received one forward since the rally here. If there are some, please send me the links.All of this makes me uneasy and I wonder how it has happened so quickly? Did the people that work for DES know this was coming? Is this why our SC told me to prepare for many changes in the near future when we met months ago? Why couldn't they tell families this was coming, was it on purpose; to prevent the outcry? I feel I need answers from all of them.
Many people working for DES and DDD are now unemployed, those that remain on the job have increased client loads and will have to work without pay periodically. I understand they are under stress and times are hard for them too. I feel very badly that this happened to them. I believe that by cutting financial support for these life changing programs the AZ government is telling the therapists and SC that what they did for their clients was not necessary, that their good work was unessential. Now thousands of people are now out of work because "We had no choice". However, what message is this sending to my family and families like mine? It says very loudly; "Your children are not important" and my heart is heavy with sadness, I feel betrayed as well. I will repeat, the fact that no one talked to our families about this before the immoral choice was made, that we were dismissed as irrelevant, is terribly upsetting to me.
I have been trying to keep positive, to keep in mind that IF the state of AZ accepts federal stimulus funds (seems there is talk about the Governor refusing a portion of the stimulus monies) there may be a re-infusion of financial support for some the programs the AZ government unceremoniously cut. I do not want to go to the place in my head that says the government has made it clear they do not value my children. That to them they are not worthy of resources being spent on them. I am concerned that if the administration is willing to take this step, how much further are they willing to take this attitude, this dismissal of people with disabilities and the elderly people who had received this very necessary aid?
However, I do not understand why people are not distressed about these budget cuts. I believe that it sets a precedent; that if they can do this to vulnerable children, families, and the elderly, welfare recipients, what is next; who is next? Do able-bodied employed people feel safe because they are not in the group that is affected? Do they know how quickly their lives can change and they may find themselves there? (injury, illness, job loss, birth of a child with a disability, an aging parent)
I am ashamed of our AZ Government and angry with our new Governor, to do this as soon as she gets into office is abominable. Will this be her legacy, to take from people with disabilities, to rob them of their future?
So they say “WE HAD NO CHOICE”, how many people doing something contemptible said this after the fact?
Tuesday, March 3, 2009
Still recovering
Meghan and Kara are still recovering from their illness. If you read all of our blogs you know that we believe Kara did not have strep throat, as the antibiotics did not improve her condition, so likely she has a virus. :o(
Tom and I keep getting sick again, Tom twice, and I woke up with a sore throat and headache again. Makes me wonder if the issue is not environmental? I have all the doors open and am letting fresh air blow through the house. I hope it helps us. Julia seems better, but says her throat still hurts her.
I have had enough of this cold-flu-thing! Kara did manage to get some yogurt and juice down and seems peppier today. She is sitting in the sun, getting her vitamin D, nothing works wonders more than D where illness is concerned.
We have another gorgeous day here today. You can see how nice and warm it is right now, though it is a high pressure system and not our normal weather for this month, or so the weather forecasters say, seems it is always this warm in March.
Currently: 83°F
Fair
86°F 55°F
Tomorrow
Mostly Cloudy
84°F 56°F
Thursday
Cloudy
82°F 55°F
Tom and I keep getting sick again, Tom twice, and I woke up with a sore throat and headache again. Makes me wonder if the issue is not environmental? I have all the doors open and am letting fresh air blow through the house. I hope it helps us. Julia seems better, but says her throat still hurts her.
I have had enough of this cold-flu-thing! Kara did manage to get some yogurt and juice down and seems peppier today. She is sitting in the sun, getting her vitamin D, nothing works wonders more than D where illness is concerned.
We have another gorgeous day here today. You can see how nice and warm it is right now, though it is a high pressure system and not our normal weather for this month, or so the weather forecasters say, seems it is always this warm in March.
Currently: 83°F
Fair
86°F 55°F
Tomorrow
Mostly Cloudy
84°F 56°F
Thursday
Cloudy
82°F 55°F
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