It's hard to believe, but this summer officially marks two years that I've been blessed to be among all of you and have treasured dearly getting to know many new friends. Thank you so much for that. Such friendship has really meant the world to me, especially in trying times. This board had been a welcoming place to come and share joy and pain.

My heart breaks when I read of misfortune that many now are experiencing. Still, I am extremely encouraged, even awe-inspired by the courage of Catherine, Lynda, and many countless others who are enduring hardships at this time.

If not sickness, it's economic woes, or threats of loss that can shake the very core of who we are. I know that these are very trying times for many people, including myself. I would really appreciate any prayers you may be able to send our way.

You see, many of you may wonder why I've not been as active here on the boards in recent months. Some of you may know already, but my daughter, Victoria, was born in 2001 at only one pound, one ounce. She was only 23 weeks gestation, and her demise was all but guaranteed. Fortunately I believe in a higher power, and for reasons only known to Him, her life was spared. Although they initially had predicted grim outcomes, she has done exceptionally well and defied most odds. After overcoming serious lung disease and retinopathy, and other life threatening effects of her prematurity, we were elated, but still worried about her overall progosis in the future.

We were so encouraged when she had a IQ test within normal outcome at 2 years old, and again at kindergarten. She presents very intelligent verbally despite having slight cerebral palsy. It is hardly noticible, again...unless you work with her closely, and then you see her fine motor deficits. NO question she has accomplished quite a lot to get to where she is today.

However, this past school year was nothing short of a nightmare. It started very difficult for her. When I suspected she needed more support, I took her to some of the foremost preemie specialists in Cleveland and the nation, just to find her IQ has dropped twenty points in one year and a half. This roughly has been due to having a disability where it is hard for her to put her intelligence down on paper.

And, children at her age (she is 8) acquire more knowledge by reading and writing, so you can imagine how this disability would affect her potential for acheivement. Tests done by doctors and the school show she is a couple years behind in most areas academically, which was a real shock. Again, I knew she needed some help, but never imagined she was behind that much.

She always got A's and B's, and this year was no different. But, as most of you know grades are only one way to measure how much a child is learning. We have been advocating for her now for almost a year, and are praying for help to come her way soon.

The doctor has recommended specific programs that can help her, but none are available here. A peaceful resolution is needed to meet her complex educational issues, so she can reach her full life's potential. As a mom, I want to know I'm doing all I can do. It will most likely require more sacrifice, but we are willing to do whatever we can for our daughter. Please pray for us, that we'll find our way....okay? She is such a deserving little soul.

In the meantime, we just need to keep sticking together here, and trust that all will be OK in the end for everyone. Thanks again for all your support and kindness. I'm hanging in there....

Hugs,
Stephanie Vogelsong
stephvogelsong@aol.com

Thank you so much. It has been a real challenge....I broke down in tears twice before noon this morning, but I'm feeling stronger now. It gets hard being the tough, strong advocate after months and months. I'm hoping there's light at the end of the tunnel, and help coming soon.

Hugs to you and please keep in touch! One day I'll make it over to your great land,

Stephanie Vogelsong
stephvogelsong@aol.com

I will not pretend to even know the depths of your sorrow on this matter, but I will tell you that I do sympathize. My youngest son had a hard time in school it seemed like from day one we were struggling to get him to be able to read on his grade level.... I have spent several nights crying myself to sleep not knowing how to help him. We had him tutored, took him to doctors had him tested for learning disablities, and nothing seemed to help. I was at my witts end when his pediatrician ask if I wanted to try him on ADHD meds I was so against this because he was not hyper, my husband and I struggeld with the decision finally as a last resort we agreed to do it on a trial. They worked.... He was like a different child from day one.. I could not believe the change in him. He has been off the meds for 2 school years now and he has been on the honor roll the entire time. I hope you find your answer because I know there is no greater pain for a parent than watching our children suffer, and struggle to make it in this world. So good luck and I will be thinking of you, and your family.

Thank you all for the kindest of words. I'm packing as we speak for Indianapolis, where Victoria will soon get one on one special help at the Lindamood-Bell Learning Center.

It has been a long ordeal and ever since she survived nine years ago against all odds, I feel that God would have me try any and everything I can to help her. She is a gift, as are all children, but surely she has a big purpose to fufill. I'm trying to make sure she has every opportunity to develop her potential, and physicians have assured me that with the correct intervention she can do well. We must keep trying to make a difference, and with persistence and continued sacrifice we will get there, I think.

Of course this is somewhat bittersweet, because for the first time in her lifetime, we will not be able to have her birthday party on July 6th with family and friends to celebrate her life and survival. Plus, after this entire year of advocating, and due to the commitment to the Learning Center, we I must miss RomCon as Catherine had invited me to attend. Perhaps someday I will meet her face to face after working on her behalf for almost two years. I was so excited about finally being part of a book event, and finally working side by side together. I had hoped to be meeting some of you, too! Oh well. Perhaps we can all plan something in the future, right?

Thanks for all the encouragement, and for your friendship. If you are so inclined, please pray for me.

Hugs to all,

Stephanie Vogelsong
stephvogelsong@aol.com

Good luck and my prayers are with you and your daughter.

It is so good to hear from you Lynda. I've sent you messages and have been sending up prayers for Tim. Your e-mail just reminded me, I have to cancel the airline flight and the accomodations for Colorado before I leave today. We're driving to Indy later this evening, as it is only a three hour drive, more or less.

You can't possibly know how much I wanted to support Catherine in her first public appearance in years. After working with her and having the chance to meet many readers, I'm just devastated to have to miss this opportunity. I know she will understand, but for me it is a real personal disappointment.

Of course, I must do what is best for my child; what good mother wouldn't? And, I know that Catherine will be understanding being that she writes of so many women who have disabilities and challenges to overcome. Tori is no different; and I do believe with the right support she will reach her full potential, just as the women have done in Catherine's books.

Catherine serves as an inspiration to us all, and I'm sure Tori will love her work, too once she is older.

Stephanie Vogelsong
stephvogelsong@aol.com

That's the important thing, that her life is awesome!

Catherine Anderson
CatherineDirect@aol.com

Sorry I've been absent of late; the trip to Indianapolis went smoothly. It was a bit strange celebrating the 4th of July away from friends and relatives, though. Tori has received four days of instruction so far, and things are going very well for her, I'm happy to report.

The suburb we are in is very safe and easy to navigate.

Thanks for your support during this time. Hope all is well for you, friends. Would like to hear from you when you have a moment to share.

Hugs,
Stephanie Vogelsong

Hugs,
Sharon
schofield726@comcast.net

Enjoy!
Sharon

We have several more weeks to go, and living 'out of our suitcases' is getting a bit tiresome, but we are doing ok. I've noted some improvements informally in how Tori is approaching words (word attack) when we read books here at night.

Eric came over to see us last week for a day and 1/2 for her birthday and it was nice. He's working extra hard right now so we can afford to be away so long. Even though the school ended up paying for the accomodations and four weeks of the program, it still costs to be away from home.

I'm thankful for all of your expressions of caring and concern; sometimes I feel I'm all alone even though I really do know that others are thinking of us and what we are going through.

Hope all of your summers are going smoothly, and that you are having good days. Lynda, I'm especially keeping you and Tim in my prayers each day. And Michelle, and everyone else who has given me encouragement, thank you from the bottom of my heart. It takes courage, but I'm hanging in here. Please keep in touch, okay?

Stephanie Vogelsong
stephvogelsong@aol.com

Hope she continues to so progress. Hang in there, it will all work out.

Thanks for thinking about Tim. He is doing much better, each day is an improvement. He has hit the point of 'why am I still not back to 100%?' He still gets tired after short walks, but he keeps pushing himself. We are off to see the lung doc this morning and I hope he is happy with how he is doing.

Tori also has spastic cerebral palsy, but only minor. She has PVL, damage to the white matter of her brain, which is likely the main root of the problems she encounters learning. Just yesterday I was allowed to visit the room and directly observe the teachers at the Lindamood Bell center work with her. I was very impressed, and hope we can come back for more weeks next summer, as her course of therapy calls for eight weeks additional.

Tori's specific needs are becoming clearer as we go. I have just started reading two books, one is called THE BRAIN THAT CHANGES ITSELF by Norman Doidge, and THE MISLABELED CHILD. Both of these share strong insight to children with learning issues. I highly recommend them to anyone going through issues with their child, or even for adults who may suffer learning difficulties.

Help is out there, it's just getting a clearly accurate picture of what it is your child needs. It is easy to state the symptoms (what he/she can or cannot do) but finding the underlying source of the problem is the key to solving the puzzle. Please pray for me as we journey with Tori through this complex process.

As a side note, I'm trying to find some down time here at the hotel by catching up on my fiction reading, long overdue I might add. A colleague of mine in this industry has recently recommended J.D. Robb's Naked in Death and the Chesapeake Bay series by Nora Roberts. I've yet to read one of her books in its entirety and I'm determined to find one that speaks to me. With millions of readers out there who follow her, I know it must be that I've not hit on the right ones as of yet.

Of course I'm anxiously awaiting Catherine's new book, being that I did quite extensive research and interviews on guide horses and also on the setting of the story as Catherine's assistant. It will be interesting to see how she put it all together to bring us another outstanding read.

Please keep the notes coming, everyone. Your friendship is keeping me going at the moment and is much, much appreciated. I don't know what I'd do without you.

Hugs,

Stephanie Vogelsong
stephvogelsong@aol.com

Hope your summer is going well! It's been extremely hot and humid here in Indiana. We had thunderstorms last night, which kept me awake, so I did catch up on some reading. Tori and I have one more week here, can you believe we will have been here over a month soon?

The folks at Lindamood Bell Learning Center are so energetic and approach each lesson with her with such enthusiasm that it's refreshing to see people care about children as they do. It's a welcome change from what we are used to. Each Monday, I get to sit in on the first part of her four hour lesson, where they review the previous week's objectives, and allow her to show what she has mastered. Informally, I can already tell that she is approaching words better, using word attack skills, and other phonemic strategies they have taught her. All in all, I am encouraged and have hope for the future.

I'm anxious to hear how you all are doing. Drop me a line when you can, ok?

Stephanie Vogelsong
stephvogelsong@aol.com

I apologize I've been offline of late, I've had extremely limited access to internet the past two weeks! I'm going on week six of being away from home this summer, and I can tell you honestly I cannot wait to return to my house! It's been odd living out of hotels, but that is precisely my lot in life at the moment. I'm on to catch up on the posts, but wanted to check in to see how everyone is 'sticking together!'

Hugs,
Stephanie Vogelsong
stephvogelsong@aol.com

Nice to hear from you hope alls going well and we hear from you again soon. xx

Here's an update of sorts. Let's see...where do I begin? Well, the past two weeks were what I've termed recently as the "11th hour" so to speak. In other words, we had to make some really swift decisions on where Tori and Brendan would go to school this coming year. The school where they had always gone since Kindergarten would only accept Brendan for the coming year, saying they would wait until the IEP was written to decide if they would accept Tori. Now isn't that cruel? And, who would put one child one place and send their other elsewhere if they could prevent it? The state appointed facilitator who was present let them know that this was illegal. As if they didn't know.....

Still, they made no decisions until two days prior to school's start. Hardly any time for anyone to make provisions for her, especially the rural district of residence, which had tried to help in the latter month or two. The district where they had gone since Kindergarden finally did send paperwork allowing her to re-enroll, but by that point we began looking elsewhere for her with only two days to spare. I mean, in the end, I guess it boiled down to did we wish to put our trust in a district that didn't really appear to want to serve our child? We had all last year as a track record to prove that. Plus, even though we were getting more of the 'right' things written on paper in her IEP, would it get carried out correctly, or by experienced, skilled people? The last thing I wanted was just words on paper. Since we had our doubts.....so, at the 'eleventh hour' we decided to do something radical, and as one administrator said, something that he's sure only one in 1,000 would do.....a gutsy move to place our two children in an incredibly successful school---but out of town some 80 miles. Their mission statement includes all students, even those who struggle, and by all accounts they live up to their reputation. There are many elementaries, three middles, and three high schools---that is how large this system is. The first day I received a call to ask if I could come to a planning meeting with about 15 experts the next day. I can tell you, they don't waste time. I'm estatic so far with the change, but a bit nervous because I've not seen nor experienced academic excellence like this. Please pray for us that Tori will succeed and that the team of experts will help her to bridge the deficits.

I have missed each one of you but didn't have internet access until recently. I'm off to read your recent posts and catch up on what has been happening in your lives. Please me a line if you have time, ok? Thanks for being here....

Hugs,

Stephanie Vogelsong
stephvogelsong@aol.com

Tori seems to have much more confidence now, especially in her reading skills. This is great news to people's ears...she really had a very bad year last school year, and Mom too! I don't think I've had a more intense, stress-filled trial since the year she was born and struggled to survive. Lynda, you seem to find the grace to keep going no matter what so if I can look to you as a model I'll be alright.

They have a whole entire team of experts here who seem to care so much about Tori's well being. We meet again on Sept. 9th to determine better what her intervention will look like. We hope to go back to Indy next summer for more intensive therapies, but we shall wait and see if we can afford to do so with the expenses we've incurred from changing her school, etc. I have been approached about a forthcoming position with a law firm which I believe I would find stimulating---as long as they are helping people in need like my daughter Victoria. One way or another I will get back to working professionally again. I sure enjoyed my time here working with Catherine and feel fortunate that I have made friends like you.

I'm still remembering Tim in my prayers and also Sid, along with many others on our board. It's the least I can do with all of you rooting for Tori. Please keep in touch this fall, ok?

Stephanie Vogelsong
stephvogelsong@aol.com

Take care, thinking about you hope things keep going well.

xx

Just last Thursday I went to her IEP meeting (for those of you who do not know, IEP stands for Individualized Education Plan) and it was truly remarkable.

Not only will she receive language therapy, occupational therapy, vision therapy, and physical therapy, but she will also have adapted physical education so that her skills will be mastered better. Both evaluations done by her Adapted P.E. teacher had her functioning at the age equivalent of a 3 year old for locomotion, etc.

Mainly her issues are understanding where her body is in space. I'm coming to find out a great deal of her difficulties are because her vision fatigues easily when having to focus in on a great deal of text and/or symbols and numbers at the same time. Those same pathways affected by the brain injury from extreme prematurity also affect how efficient the pathways are in her brain. In other words, the part that controls visual/spatial tasks has been affected.

Now for good news. Thanks to the awesome program at Lindamood-Bell this summer in Indiana, her new school has her reading level as mid to end of second grade. So although behind entering the 3rd grade, it is not near as behind as she was prior to getting help this summer. This makes me feel we truly were winners in our quest against her old school system because we were able to get help for her even if it was by threat of force. What the last year took out of me I can never completely explain in words.....both personally as a mother and professionally. Still, I feel that God takes care of people who are wronged and who are sincere, loyal and faithful followers. By fighting for her needs, my professional life suffered big time temporarily. Now, I'm energized and ready to explore opportunities now before me. I just think of the thousands of families out there who would not have been able to move for the sake of their child, and those whose children will continue suffering without relief. I can feel their pain and it is agonizing to me that many have no one to turn to.

Our state (OH) has a long way to go in meeting the needs of special kids, and in fact was cited in over one dozen areas of non-compliance by our federal govt. just this past year. The need for equitable education could not be greater, and the Ohio Supreme Court has ruled that this is not lawful or equitable but has declined to do anything about it. So, in our case, Eric and I took matters into our own hands and got our child help. Professionally, I'm exploring options. Tomorrow I'm headed to meet a propsective employer and have two other leads. I could not be happier to know that my child is safe in the hands of professionals who are highly skilled, motivated and caring. What a burden lifted, let me tell you. I feel free to resume my life.

Still, I'm a country gal and where we reside now is extremely affluent which makes me somewhat like a fish out of water. Having said that, everyone is kind and the setting does indeed have trees and is gorgeous. We live right beside a nature preserve, so I can see trees and nature from our back deck.

Overall, I believe that I am adjusting to change just about as well as I can. When this first started exactly a year ago today, if you had tried to tell me I'd spend all year advocating, hire an attorney and have court dates set, only to settle for spending most of the summer in Indianapolis, IN, with Tori at an intensive learning facility, finally to move to Central OH to a successful, progressive suburban city, I'd have told you "No Way." Goes to show you that we don't know our future, and as much as we'd like to think otherwise, we just aren't in control.

If any of you know anyone who needs help or informal advice about special education and how to seek an advocate for children with disabilities, please don't hesitate to reach out to me. I may not have all the answers, but I'll try to help in any way I can.

Hugs,

Stephanie Vogelsong
stephvogelsong@aol.com

I have a friend who has two children in high school. Their both failing classes and they don't care. But she's always allowing them to go to the movies and do things after school. So, she's actually allowing them to get away with failing school. I told my daughter that if she ever failed a class, that she would have to pay for summer school herself. She never failed a class.

Sorry I have been 'out' so to speak. Thanks for all the well wishes for Tori. She's doing amazing things here! Sadly, my son has been having a bit of an adjustment to the new expecations here. He was only two days eligible when he went to Kindergarten (late birthday) but we didn't hold him back per my husband. So, even though he got straight A's in 2nd last year, we decided to hold him back when I moved due to his young age. Now instead of being the youngest in his class, he's one of the oldest!

I've been substitute teaching at the schools here where we reside now. They are world class, state of the art. All three high schools in the district made Newsweek's top 600 or so in the nation, so I am amazed at the level of education I'm witnessing. In case I've not mentioned, I'm from a rural part of Ohio---so this is a real eye opener in a good way! Or, I guess you could say sad way because the schools are so behind in the rural parts. Lack of funds, apathy, nepotism in hiring, and lack of real parental involvement and support round out the reasons.

I read of your struggles and I was just watching Larry King Live tonight about bullying in schools. Not enough is being done to protect the innocent. Another thing, I've noticed it IS the role of the school to set the tone early of acceptance of people who may be different: short, tall, thin, large, or of other religions and social status. Tori and Brendan's new district is WONDERFUL about that, as there are like 18 different languages spoken natively in the district.

Not enough is being done to address the special education services in our state; we've been cited over a dozen times (the Ohio Dept. of Ed's Office of Exceptional Children) just this past year for being out of compliance in Federal IDEA standards. It's a sad day for special kids in Ohio unless you have access to the best public schools, and not even all of them have effective special education.

I just about cried reading that any little girl would be bruised at school, and I for one would consult an attorney if you do not get anywhere with the administration. Your child is to be in a safe learning environment and it sounds as though there may be a case of neglect by those in charge of her there. They are bound to protect her by law.

And out there standing up for their children---keep on standing! It will take courage and it just well may take sacrifice (I know this all too well) but in the end you will surely be blessed beyond measure. I really believe this!

Stephanie Vogelsong
stephvogelsong@aol.com

The children and I spent the weekend in Southern Ohio, visiting with relatives. We'll be back to the suburbs shortly, as they have a wonderful harvest party to attend with their classmates later this afternooon. They will have a wonderful time on a hayride, selecting pumpkins and gourds, animal petting, and roasting marshmallows etc. at Leed's Farm, in neighboring Marysville.

This event is sponsored just for their elementary school (one of 12) and is sure to be fun for all!

Hope that everyone is enjoying the fall season. The days here are warm enough that you need central air, but the nights get very chilly. The leaves are half way off the trees here in Southern Ohio, the hills rolling with multicolored foilage. It is truly a beautiful site to behold!

Hugs,
Stephanie Vogelsong
stephvogelsong@aol.com

I am hoping to move away so i can start my little girl at a new school. Maybe if i had not given her discipline and let her bite and bully other kids she would get the attention she deserves. We are teaching her most things from home as that school is hopeless.

I was always bullied in school for the way i look. I still to this day don't know why they thought my look was so bad, i wasn't overweight i was normal. yes i had a brace as a kid for a year. I didn't wear makeup and got on with my work. I do not want the same for my baby.

Then when i was 17 or 18 at least half of the boys that had bullied me had chatted me up o asked me out. Was weird. I always fought back and stuck up for my friends. And my little sister. It is school holidays next week and i am looking forward to it.

Can you seek legal advice? A black eye means someone is not doing his/her job supervising your child. Schools, at least here in the US, have the legal obligation to provide a safe learning environment. I am extremely concerned for her, and my heart goes out to you. Especially after what we have had to endure, I am all too aware, and my thoughts and prayers are with you.

If you cannot move her, get an attorney to help advocate for your child. Some are low cost, and in rare cases, they will work pro bono (free!)

If an attorney is too expensive, there must be child protection agencies near you! Pleae drop me a note to let me know how this is progressing. You must take action, Michelle and quick. The emotional scars that will form from this abuse will take years to heal.

Please let me know if I can help you somehow with this. I know I'm across the way but I care.

Hugs,
Stephanie Vogelsong

Here they only have one or maybe two supervising the play yard as the government simply cannot fund it anymore. Just like there is not enough teachers. Her actual teacher is ill at moment and the supply teacher knows her very well and is keeping an eye on her.

We have an appointment to get it all worked out.She had a good day yesterday. Will see what happens. I used to hate school because of the way the boys and girls were with me. I do not want her the same.

She has a lot of friends just gets upset easy and the boys run around so fast makes you dizzy i can see why there are alot of accident. It is a catholic school so is usually pretty strict.

Thanks for your offer. I think she gets upset as it is a new teacher and shes not very attentive from what i got out of my daughter yesterday. Alot of the mothers are complaining and we are having a parent meeting.

How is it going for your little girl? I'm hoping that you've found some answers by now. People do not realize it takes time to resolve issues at some schools. For example, when Tori began to have difficulties at school, one friend suggested I have it wrapped up in two weeks. It was literally nine months, two attorneys, and lots of heartaches and tears. Not to mention helping my attorney draft complaints we filed to the State of Ohio on behalf of Tori.

It is so unfair that children have to suffer at all, or that they are abused, bullied, and like my daughter, frequently victims of educational deprivation.

I want you to know that I'm often thinking of you---and saying a prayer for her well being there and also for yours at home. Please send an update soon, okay?

Hugs,
Stephanie Vogelsong
stephvogelsong@aol.com

I think it is going okay. I spoke and worked with the teacher and she promises me teah is a very bright girl who just wants to please everyone which isn't always possible.

Teah was mainly upset about PE and we worked out it was to do with her asthma so i have spoken to the PE teacher about it and explained she is only 5 and although knows she needs her asthma pump may need to be reminded abd watched.

As for the kid pushing about my little girl i had words with them turns out they are in turn being bullied and seems to be taking it out on teah to try and divert the attention to her. It is all fine now and the kid involved stays away as i have asked.

Teah is the youngest in her year and is almost a year younger than the rest so the teacher has promised to watch her although she is doing well.

Thnaks for asking. x

This past week has been mixed with holiday cheer and some somewhat tough news. My daughter, Victoria (for those of you who may not know---a former 23 week, one pound one ounce preemie) went to see the cerebral palsy specialist for her annual check up. This year, the Nationwide Children's Hospital has a comprehensive team approach. This is where several physicians, OT, PT, Speech/Language, etc. work together to evaluate the patient and assess their needs. Although Tori has been seen there since 2003, a team evaluation had not been available before.

I was dismayed to learn that Tori will have to be fitted with DAFO's, or inserts into her shoes to help her ankles---to give her feet better support. The physical medicine physician ordered these for her. They will stick out of her shoes as if she were wearing a high top, but that is as far as they will extend. Still, this is the first time we have had to have orthotics, so I'm hoping she will adjust to them and not fight wearing them. It will be the first outward symbol of her disability, and as shallow as that may sound to anyone, it was tough to absorb once the news began to sink in. Until this past year, her disability appeared mild. Now, it seems like her wearing these will be like a banner screaming "I'm disabled, world!" As I type this I realize how shallow I appear. I'm not, really. We have never been too proud to get help for her, and as many of you know I've gone to whatever cost to advocate for her. I just guess I need some encouraging news and for things to look up.

Another blow was that in one of her previous visits (2008) they noted a slight curving of her spine. Well, with growth etc. that has now worsened. Therefore, scoliosis is setting in. They will monitor it, but I believe I am going to get a second evaluation of this independently. They say she is no where near needing braced, but this is a consequence of the tight leg muscles due to CP. It causes her back to round, and makes it tough for her to sit up straight. (This makes me so angry, that the former school's therapists didn't want to give her PT, saying that if she sat up all day in school, that would stretch her muscles! duh? The teacher reported that she can't sit up straight! What didn't those so called professionals understand?

Also, the nutritionist who was part of the team has ordered her a new nutritional plan. I'm thrilled that she is probably about 35 percent on the growth chart on height, but in weight and BMI index she is well below the chart at all, which means she is in dire need of intervention. She will be getting two cartons of Boost Kid Essentials 1.5 per day, which will give her over 700 calories there alone. I am pleased that this drink is available, and so far she has loved the samples.

If anyone has information on DAFO's, Scoliosis due to CP, or Nutritional Info. on Boost, please share!

She will be getting an audiological evaluation, and they have ordered all of the following therapies: OT, PT, Speech/Language. It helps that we live so close to the Nationwide Children's Hospital centers so that she can have access to appropriate intervention and therapies.

I know many of you have followed our year long struggle now to get Tori the help she needs academically, and your support has meant the world to me. She is now reading at grade level, thanks to the accomodations such as making font larger, etc. The school district here has her needs at the foremost, which is strikingly different from where we were the past three school years. "Mom" has been substitute teaching (almost 40 days!) that is why you haven't heard from me as much.

Well, that is just about all for now. I know I'm not the only "Mom" with news, so please give an update about you and your family. No news is too big or small, we all must continue to stick together and thank goodness we have this forum to do so.

Big Hugs,

Stephanie Vogelsong
stephvogelsong@aol.com

I also have mild scoliosis and where the AFO's. The scoliosis was diagnosed when I was about 13. I'm sure I had it long before that time, but back in the 70's the school nurses would have all the girls go into the nurses office to be checked out.

Both of my AFO's go the right under my knees. I started wearing the right one in 1995 and the left in 2001. It takes awhile but you do get used to them. When Tori gets them, she should just wear them for about an hour at first. They do cause blister's and you have to learn to walk in them and to learn to put them on. I don't wear them around the house, but do wear them when I go out. I did take me a few months to get used to wearing them, but they do help in the long run.

I am thinking about taking her to a specialist for the scoliosis to have them xray her lying down. They took this one sitting up. I know her back curves, or rounds when she sits up. I am going to try to get her PT at least twice weekly if possible. She is eligible for a new program and is only 146 in line here in this new county we are in. She has remained in the top 30 or below in our rural county, but they only get like one or two waiver slots a year. Up here in this urban county, they have many more slots come available so I hope we get one within the year. With a new governor coming on it is hard to say, you know?

Again, thanks for the practical advice and if you have time tell me more about scoliosis, especially would she have to wear a brace for life or possibly only for a while?

Stephanie Vogelsong
stephvogelsong@aol.com

A book that you really need to read is John W. Quinn's Someone Like Me. A very inspirational book. John was born with CP and lied and got into the Navy. He never told anyone and he retired after 20 years as a Senior Chief Petty Officer. He now lives here in Tucson. I met him at one of his book signings. If you order the book from his web site he will sign it.

How does the program that Tori is on a waiting list for work, and what services do they provide? Paige was able to get on the states vocational rehab program. We signed up for it in Jan. 2010 and there was a two year waiting list for it. I'm not sure how it happened but she was called in June. She just started a job adjustment program. She's actually volunteering, but getting paid by the state. So, she's getting some job experience. Every little bit helps out.

Tori has had a waiver from the Ohio Dept. of Developmental Disabilities which helps pay for her medical expenses due other premature birth. She alone would have qualified for other federal programs, but is ineligible because my husband's income exceeds those thresholds. And, this is since she is a dependent (under 18 years of age.) After 18, she may receive other help depending upon her status.

However, the DD waivers are the only ones based upon her income alone, which at 9 years old is zero. So, she qualifies for help with medical expenses, and general respite care---which means if I have to go out to the doctor, business appt, etc. someone can come and sit with her. The funds can be tailored to her specific needs, such as having someone work with her on life skills, i.e. to help her become more independent. She has significant fine motor issues so things like zipping her coat take quite a while. Still there is much she can do, and can learn to do. Her handwriting has greatly improved over the past year.

I am really not exactly sure what all the new waiver will cover, but I do know that it just provides a larger budget to work with for her. For example, I know she can get theraputic horseback riding among other things. There are day camps, week long camps, etc. where she can go during a week or so in the summer.

The main reason I am happy that she is close to getting the waiver is that we just cannot wait until she is an adult to decide she needs one then. There are literally thousands of people on the lists now. By that point, what number would she be? The point is to get her the help now in hopes that she will not require as much in the future. However, I want to be certain that she has resources available to her as she reaches adulthood just in case something ever would happen to my husband and/or myself.

Hope I've explained myself well. We want her to overcome as much as possible but we feel that the earlier the support is provided the better the long term outcome.

Stephanie Vogelsong
stephvogelsong@aol.com

Income has never been a problem with the state of Arizona's VR program. In fact Paige received some occupational and physical therapy through the state when she was 1 to 2. When she was 3 she was able to attend a early intervention pre-school. She attended until we moved to Oregon and I was able to find another program there. Then when we moved back to Arizona she was in Kindergarten and she started receiving some help in school.

I'd like to think it is what we are now giving her in terms of educational support, but I have to wonder how much of this is just natural development. I shudder to think that it is now happening only because we've now placed her in a better educational setting.

Merry Christmas,
Stephanie Vogelsong
stephvogelsong@aol.com

It sounds like Paige had what Tori did up until Age 4. Here it is called "Help me Grow." But, after age four it is not provided. She had caught up a great deal with this help (OT, Speech, etc.) and at Kindergarten her IQ was normal range but in her performance IQ was much lower. I didn't understand what that meant at the time, but now her verbal IQ dropped significantly too, which is what research says it can do without proper education (multisensory ed.)

I listened to what the so-called professionals said about her in pre-k to kindergarten, thus thinking she'd continue developing on her own and that she was in the lower range of normal. I found out differently last year after all the strife I encountered with her school system. I definitely have a much clearer picture of what she needs, however am somewhat helpless to get exactly what she requires to thrive.

Our move here to the suburbs is helping but only time will tell to the exact extent their programming will work for her. I remain confident and hopeful, you know?

Any other tips would go a long way, and thanks for caring about us.

Hugs,
Stephanie Vogelsong
stephvogelsong@aol.com