To Everything There Is A Season

I like to think that our story is one of triumph despite the sorrow and pain of the last few years.  I am divorced now. My sons and I had to leave our home in New England for a more affordable way of life in the southeast.  We have endured tumultuous legal, emotional, and financial battles unimaginable to us just a few years ago.  Yet our story has remained a love story. It is a story of changed lives and changing lives. It is the story of a loving God who gathered up a newly-single, middle-aged mother and her children and taught them how to dance again.

In Jeremiah 29:11 we read: "For I know the plans I have for you," declares the lord, "plans to prosper you and not to harm you, plans to give you hope and a future." The verse is written in a prophetic letter sent by Jeremiah from Israel to the Jewish exiles in Babylon. The verse is about future plans for the restoration of something lost.

We need to remember that God is our Helper and our Healer. He wants to restore our souls. Though He cannot change what has happened to us, He can change the consequences of it. With Him, we can let go of the ashes of the past. God will not give up on us; He has the same good plans for us that He had when we were born.  

PRAYER: Heavenly Father, help me remember that wherever I go and whatever I do You are with me.  The path You have set before me has not been set by chance - You have given me divine appointments to keep. Thank You for allowing me to be a blessing to every relationship, situation and circumstance I encounter each day. I have much to give as I let Your Holy Spirit give through me.  I shall keep going because You are there to lead me onward.

"You hold my hand. You guide me with your counsel." -- Psalm 73:23-24                                    

Zoe: A Mother's Good Night Story

In Her Dreams by Suzanne Perryman (SPECIALNEEDSMOM.COM)

Zoe calls me during the night, and I go to her- sometimes she needs milk, or is tangled in the confusion of blankets she likes to cuddle , sometime it is more than that. But when I tuck her in again, her head atop her Barbie pillow with one arm tucked underneath, I wonder about her dreams. She tells me sometimes about about the monsters and the princesses that visit in her little girl dreams. But as I watch her now, eyes closed, the even breathing of sweet sleep beginning, so content. I wonder what she dreams. ... O in the middle of the night, is often frightened - as if the anxiety she battles by day is exaggerated with the dark of night. I understand this, instinctively. When I find myself up in the middle of the night, soothing her fears, getting a snack for her, I worry too.. about the future, their future, how much I have to do, how much I can't get done, I worry about the rising cost of healthcare, the marketing jobs on my to -do list, the appointments I need to make, even the laundry that sits unfinished. When I have tucked them in again, I crawl back under my covers. I seek the warmth of my husband and try to relax,saying a prayer for my girls. But as I start to fall off to sleep, I still can't help but wonder about Zoe when she dreams. Does she walk in her dreams? Can she run? Dance? Bike ? Can she wear dress up high heeled Cinderella shoes and dance about in play? Does she dream of those things she so often asks to do? I hope so. I hope her dreams carry her into her own magical world, so that if only in her slumber, all her dreams come true.

Posted on May 03, 2010 at 06:49 AM in April Autism Awareness Month, Autism + Mitochondrial Disease, autistic kids, epilepsy diagnosis child, Inspiration, mitochondrial disease, mitochondrial disease child, parenthood, Special Needs Mom , Special Needs Parenting | Tweet This!

DNR Order Issued for Disabled Child Without Permission of Parents

Dad stages protest in Glens Falls over DNR order issued on his disabled son without his permission

June 14, 7:33

Jack Frost prostesting DNR order issued for his son without his input or permission

Glens Falls, NY--Rain did not stop Jack Frost and his friends from holding a brief protest on Saturday, June 12, 2010, in front of the office of Glens Falls Pediatric Consultants.

Frost has spent months trying to get the attention of politicians, school officials, state officials and the media concerning an issue he believes is very important to all parents--the issuing of DNR (Do Not Resusciate) orders on disabled children without the consent of both parents.

A DNR order was issued on Frost's disabled child, without his input or permission. Frost has been fighting to have the DNR revoked.

Jack Frost and friends protesting in Glens Falls

According to Frost, New York State Public Health Law section 2977 sets forth a process for ordering a nonhospital DNR

"consent to a nonhospital order not to resuscitate shall be governed by section 2967 [Decision-making on behalf of a minor patient]..." Section 2967 requires consent of the legal guardian/parent and consent of the minor unless the physician determines that the child is unable to provide consent. Also, "Where the attending physician has reason to believe that there is another parent or a non-custodial parent who has not been informed of a decision to issue an order not to resuscitate the minor, the attending physician, or someone acting on behalf of the attending physician, shall make reasonable efforts to determine if the uninformed parent or non-custodial parent has maintained substantial and continuous contact with the minor and, if so, shall make diligent efforts to notify that parent or non-custodial parent of the decision prior to issuing the order." Public Health Law Section 2967 (2)(b)."

"(c) If the attending physician has actual notice of the opposition of a parent or non-custodial parent to consent by another parent to an order not to resuscitate a minor, the physician shall submit the matter
to the dispute mediation system and such order shall not be issued or shall be revoked in accordance with the provisions of subdivision three of section twenty-nine hundred seventy-two of this article."

Fathers who love being dads joined Jack in the protest

In spite of multiple emails to and conversations with his child's school, pediatrician's office and other people, Frost has been unable to get the DNR lifted. Frost even went to the Wilton Mall to discuss the situation with Senator Roy McDonald back in December when McDonald set up there to listen to constituents' concerns. Frost maintains that a DNR in his son's case is totally unnecessary as his son has only been hospitalized once. While his son is wheelchair bound he is "cognitively fine, very bright and has a good sense of humor."

Diane Coleman, JD, President of Not Dead Yet, based in Rochester, wrote a letter to Senator Roy McDonald on behalf of Frost, drawing attention to the dangers of DNRs, especially on children.

In her letter, she said,

"Children with disabilities deserve the equal protection of the law, and equal access to the same
health care treatments that non-disabled children have a right to expect. "

"One documented problem with DNRs is that health care providers over-interpret them, broadening their meaning beyond CPR to the extent that they deny other health care treatments."

"New research suggests that some doctors may too-broadly interpret the "do-not-resuscitate" (DNR) orders that some patients choose near the end of their lives. . . .For the study, the researchers surveyed 241 physicians . . . overall they would try fewer therapies when there was a DNR order. "Physicians are less likely to agree to initiate procedures ranging from complex therapies, such as intensive care unit transfer, to simpler interventions, such as blood transfusions,“ write Beach and Morrison. The report can be found in the Journal of the American Geriatrics Society 2002:50."

"Coleman stated also, "Children have tremendous capacity to recover from adverse medical conditions and, with or without disabilities, enjoy life, "playing the cards we are dealt," as the saying goes. My parents were told that I would die by the age of twelve due to my neuromuscular disability, but here I am at age 56, still working full time."

Because he has received little response from politicians, school officials or his children's pediatrician, Frost decided to take to the street last Saturday to bring attention to his plight and the plight of his son. He was joined by several friends who staged a brief protest in front of Glens Falls Pediatric Associates in spite of the rain.

For more info: Read more articles by Dan Weaver on parental rights, family court, child custody, child protective services and similar topics.

A Chance For Bliss: Special Needs Persons Helping Special Needs Animals

Have you see the recent story on A Chance for Bliss,? It is a unique animal sanctuary , a home for senior, special need pets, and for those with end of of life issues. It is run by David and Deanna Bartley in Penryn, Calif. This wonderful couple not only helps animals of all kinds in need, but also brings people with special needs in to help with the animals.

Whether animals provide a service or just their companionship, pets are a great help and comfort to a person with special needs. Petting a dog has been shown to lower blood pressure. Bringing a pet to a nursing home cheers everyone's moods and helps resdents engage in more social interactions. The Bartley's have taken this a step further at A Chance For Bliss; they understand that persons with special needs can also be a great help and comfort to their animals in need.

Pet therapy, therapeutic horse riding, and hippotherapy utilize relationships between people and animals to improve people's mental and physical health. Through the animal-human bond, animals offer us unconditional love and companionship. The Bartley's recognize that special needs persons can provide the same kind of acceptance, love, companionship, and friendship to a special animal in need. Their program brings happiness and companionship to those most often forgotten in today's society: the elderly, the mentally and physically challenged, and the terminally ill. And this, of all species.

Please visit A Chance For Bliss's Website at http://www.achanceforbliss.com/

Full of Grace: A Special Needs Mother's Teachable Moment

Jake's fate: In the end, don't we all have special needs?

Friday, May 28, 2010

By Renee Georgi

Margaret Scott / Newsart

Renee Georgi recently received an anonymous letter from "concerned parents" asking her to find an alternative classroom setting for her son Jake, who has autism, because he is a "distraction" to other children and requires "extra time" from teachers. Here is the letter and her reply:

•

Dear Ms. Georgi,

I am writing on behalf of a growing group of concerned parents at Hampton High. While we can understand and even sympathize with you wanting your son Jake in a "normal" learning environment, we feel that the extra time he demands, coupled with his distractions, is unfair to the rest of the children. With getting into a good college becoming more and more competitive, we feel that our children are not getting the education they need due to one child taking up an inordinate amount of time and causing distractions.

We feel it would be in the best interest of all the children if you would consider an alternative setting for Jake. In no way are we faulting you for wanting what you think is best for your child; we only wish that you consider the impact on the other children.

Thank you for your time and consideration with this important decision.

•

Dear Concerned Parents,

In your letter, you asked me to "consider an alternative setting" for my son. With all due respect, I think I'll pass and keep my son right where he is.

You see, my son and the many others like him have fought very, very hard to get where they are today. And the reason they are where they are today is because most of society sees the potential that children with special needs have when they are taught in the way that they learn.

Every year our son makes more and more strides and requires fewer supports in school, giving him a greater chance at becoming an independent, productive member of society who can interact with all types of people. In addition to academics, life skills and social skills, he has also been taught specifically how to work through various distractions in the classroom. Since your child seems to be struggling in this area, I recommend speaking with your child's teacher to learn strategies that work for both regular-education and special-education students.

Another recommendation I would like to make is for you to do an Internet search on the word "IDEA" (Individuals with Disabilities Education Act). You see, according to the IDEA's Least Restrictive Environment or mainstreaming policy, school districts are required to educate students with disabilities in regular classrooms with their non-disabled peers, in the school they would attend if not disabled, to the maximum extent appropriate.

It is the law.

I think this might help you understand why schools like Hampton have co-taught classrooms. If you do a bit more research, I think you will also find that IDEA's positive impact has been across the board with both regular-education and special-education students. I firmly believe that the students who take the time to get to know their fellow classmates with special needs will likely end up being the successful leaders and role models in the world who have the skills to interact with all types of people.

Over the years I have had many parents approach me and tell me how much their children have enjoyed getting to know my son and how much the relationship has enriched their children's experiences at school. Parents tell me that the things my son teaches their children simply can not be taught in a text book or by a teacher. They are life lessons.

I attribute this positive mindset on the part of these children to both the guidance they receive at home and to the district's teaching of a civic virtues program to the students over the past several years. Perhaps the program should be made available to parents, as well, since it is apparent that the students are not the only ones who could use a good lesson in virtues such as kindness, respect and tolerance.

In closing, I ask that you address any of your concerns to your children's respective teachers in the future. Like many parents, I have found the staff at Hampton to be most engaging, helpful and willing to assist parents with individual educational concerns such as yours.

Sincerely ...

Renee Georgi is a pre-school teacher and mother who lives in Hampton (renee.georgi@verizon.net).

Read more: http://www.post-gazette.com/pg/10148/1061277-109.stm#ixzz0pHJuAC00

Top 20 Reasons Moms of Special Needs Kids ROCK

HAPPY MOTHERS DAY to all special needs moms! I hope you enjoy this list of the top 20 reasons we are special (sent to me by momlogic).

Top 20 Reasons Why Moms of Kids With Special Needs ROCK

1) Because we never thought that "doing it all" would mean doing this much. But we do do it all -- and then some.

2) Because we've discovered patience we never knew we had.

3) Because we are willing to do something 10 times, 100 times or 1,000 times if that's what it takes for our kids to learn something new.

4) Because we have heard doctors tell us the worst, and we've refused to believe them. Take THAT naysaying doctors of the world!

5) Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6) Because we gracefully handle the stares, the comments, the rude remarks. (Well, mostly gracefully.)

7) Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good!

8) Because we are strong. Man, are we strong. Who knew we could be this strong?

9) Because we aren't just moms, wives, cooks, cleaners, chauffeurs and women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches and cheerleaders. Whew!

10) Because we work overtime every single day.

11) Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our families. And our hairstylists, of course.

14) Because we inspire one another in this crazy blogosphere every single day.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing for our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever.

20) Because ... well, you tell me.

Courtesy: Love That Max.

Read more: http://www.momlogic.com/2010/05/top_20_reasons_moms_of_kids_with_special_needs_rock.php#ixzz0n9dV5Gz5

Haley Moss: Out of Autism's Closet

She could not talk until almost Kindergarten age, but went on to become a straight-A student at a prestigious private school. Now "out of the closet" with her autism, Haley Moss has written a book to help other teens with autism find their way.

Three cheers for Haley Moss, her parents, and all who helped her along her road! I wish her mother would write a book too -- note her words about people pulling away from them when Haley was diagnosed, and their decision to be "closeted."

"In middle school, everyone just cares that you're like them, and if you're different, you get picked on." --Haley Moss

Teen with autism advises other 'different' kids

By Elizabeth Landau, CNN

April 2, 2010 5:47 a.m. EDT

Haley Moss, 15, loves art and has exhibited paintings in South Florida.

STORY HIGHLIGHTS

• Haley Moss, 15, wrote a guidebook for middle-schoolers with autism
• Understanding nuances of socializing is hard for people with high-functioning autism
• Family feels relieved that Haley's autism is out in the open

(CNN) -- Figuring out what's cool. Struggling for acceptance. Dealing with homework. These are familiar perils of middle school. But Haley Moss did it all while dealing with a hidden challenge: autism.

Now Haley, 15, is using her experience as a person with autism to help others deal with middle school. She wrote and illustrated "Middle School: The Stuff Nobody Tells You About," which details her advice for students.

Autism is a developmental disorder that impedes communication and social interactions, and it often includes repetitive behaviors. Diagnosed in childhood, the condition prevents some people from ever learning how to talk. As many as 1 in every 110 children in the United States has an autism spectrum disorder, according to the Centers for Disease Control and Prevention.

Haley's case is on the high-functioning side of the autism spectrum. She has always attended regular schools, doesn't have special classes and is a straight-A student at a prestigious private school in South Florida.

"Most people just notice that I'm shy, and that I don't eat a ton of food at school," said Haley, of Parkland, Florida. "Other than that, I come across pretty normal."

Haley has had a long history of working on that shyness. When she received her diagnosis of autism at 3, she couldn't talk yet. She didn't start speaking until 4. Her parents got her private speech therapy as well as hippotherapy, a technique that involves a horse and a speech-language pathologist that has been shown to increase verbal communication in some children.

Children with autism who become high-functioning like Haley typically show great improvement within the first few years of therapy, said Dr. Bob Sears, pediatrician and author of "The Autism Book." By 7 or 8, they will have overcome many of their challenges. Early intervention is critical; treatment should start as soon as possible, he said.

Perhaps the greatest challenge for people with high-functioning autism is understanding the nuances of social interaction, Sears said. Haley relates to this.

"Sarcasm sometimes really confuses me," Haley said. "The jokes that these kids make don't make any sense."

Haley speaks fluidly and articulately. She is well-versed in public speaking, but she still has problems starting conversations. It's easier if people start talking to her first, she said. She has a passion for art and enjoys playing video games, but these are not common interests of girls at her school.

"I don't know what to say to some of my typical peers, because I can't easily launch into discussion about makeup and, like, their boyfriends as easily as they probably could talk about something else with me," she said.

But Haley also believes her autism also helps her in school. She can memorize things faster than most of her classmates, so it doesn't take as much work to study for tests. And her friends rely on her to give advice about social situations that's different from what most people would say, she said.

Being a parent of a child with autism was isolating for Haley's mother, Sherry Moss. She remembers bringing it up with other parents when Haley received her diagnosis. They thought it was contagious.

"They didn't want their kids to play with Haley anymore," she said. "So then, I never told anyone any more."

The family has always informed school administrators about Haley's autism. But they kept the matter private otherwise until Haley developed a following for her artwork as her paintings were displayed at various galleries in South Florida last year.

"Once she started getting well-known, I was like, 'Now's the time Haley, now you have to be the face of autism and let people know what we went through, and give them hope,'" Haley's mother said.

Haley went public in school when her teacher encouraged her to talk about autism in relation to her first art show. She also spoke at an Autism Society of America event last year.

With Haley now open about her autism, the whole family feels relieved, her mother said. Haley also thinks that being "out" in school is easier.

"It helped other people understand why I'm shy. It didn't help socially at all, but it helped those who were somewhat social with me understand why I am the way I am," she said.

Much of Haley's advice in the book applies across the board for anyone in middle school, but she includes anecdotes written from other kids with autism spectrum disorders as well as teacher perspectives. She also tells about her personal experiences from the three schools she attended for sixth, seventh and eighth grade.

Here are some tips from Haley:

1. Seek help if you don't understand something

People with autism spectrum disorders are often detail-oriented and miss the bigger picture, Haley said. Her mother would read English books with her and discuss the themes to help Haley see them more clearly. Haley recommends consulting parents, siblings, teachers and textbooks if you are stuck on something.

2. Learn about trends to talk about them

Haley's approach to popular culture is methodical and detached: learn about the trends to fit in, even if you don't like them. She saw all the "Twilight" movies on opening night even though she doesn't like the franchise much. She can recognize a popular Jonas Brothers song. Being up on the fads helps with socializing and avoiding ridicule, she said.

"In middle school, everyone just cares that you're like them, and if you're different, you get picked on," Haley said. "No one accepts different people."

3. Trust your parents

People with autism spectrum disorders tend to assume that everyone is trustworthy, and that can make them be easily manipulated, Haley writes. She recommends having a good relationship with your parents and entrusting them with your secrets instead of someone at school.

Her parents help her with academic and social problems. Also, she looks to her mother to interpret classmates' comments that she didn't understand, instead of jumping to conclusions.

Her next big project will either be a book about high school or an autism picture book, she said. Visit her Web site