Fighting For Timmy's Future - The Not Otherwise Specified Child

June 2011 and Timmy is double digits now!

2011-06-23T21:09:00.000-04:00

It's interesting to go back and look at the blog; when I started it, how hard things were, how hard they continued to be and where we are today.

This week you turned 10 and got the one present you really wanted, an iTouch! It's attached to your fingers and you don't want to put it down. There's so much to say to you but it's been a long time since I have written here and an even longer time since I tried to put everything into words that are inside me. I don't think I will get there tonight just know that I love you and I am really proud of how hard you have worked the past year on yourself.

MomMom

I am bring Timmy home again..

2010-02-05T00:26:00.000-05:00

I have been fighting for over 2 months (my recent battle) to get Timmy the help he needs while he is still young. I have visited RTC's in New Jersey and I am sad to say the population they serve is not for children on the Autism Spectrum. That means the staff is not trained properly to work with these special children nor do they even understand it. The places I have seen were dark, dirty, depressing and not a place I would ever choose to place him. Instead with promises of limited supports I am bringing him home on Monday. It's a really wacky system we have here in NJ. They haven't even begun services yet they are already telling me we will be losing some of them in 45 days. You see it isn't about what Timmy needs to succeed, it's about a numbers game. They are not very happy with me, I have filed a grievance against the Department of Behavioral Health in NJ. There are not following their own published policies, so I filed a formal grievance. I hope for them I receive the response I have been promised. They have 5 days which is up tomorrow. There are laws that protect special needs children and fortunately there are some great groups out there that I will reach out to. I hate to say I will have to sue the State of New Jersey to get them to follow their own documented polices but I may have to. I am not giving up on Timmy or myself!

January 30. 2010

2010-01-30T22:27:00.004-05:00

i just don't understand why Haiti is more important than our children's future. Keeping the children in the same state with their family isn't always the best or closest option when they need intensive treatment. The agencies refuse to look at a placement out of their own state even if their own policies say they will. It seems that if a child has Multiple Disabilities the appropriate agencies designed to help pass the buck from one to the other. Hey DDD should be covering this so call them, hey Mental health should be covering this so call them, hey the school district should be paying this so call them, wait do you have SSI for him yet? You need to call them, Medicaid should be covering this. It's a viscous ugly expensive circle. Why is there not one single agency that handles our children's needs? Why are we passed around and passed around, it's a merry go round that doesn't stop. I have now written to my Governor, call my senator, contacted my congressman. What do they say, well so far when they have responded? They say call the 5 different agencies I have already called. The devastation in Haiti is horrible and the people of the US including myself have reached into our pockets to help. What the politicians and media don't understand is the devastation happening right now in the US to our own children. Mrs Obama has commercials asking us to help Haiti, why doesn't Mrs Obama do a commercial to help the children in her own country. No we didn't have an earthquake, what we have is a really screwed up fractured system that isn't helping our own special needs children. WAKE UP AMERICA!

It's been a really long year!

2010-01-22T18:48:00.004-05:00

I just realized it's been along a year since I posted anything to my blog. So much has happened and yet still things have remained the same. I am still amidst a huge struggle to get help for Timmy. He's still having a hard time, services for him are not readily available. You see he's a kid that falls into the gap, he's high-functioning with an average IQ however he needs intensive Applied Behavioral Therapy. It's just not easy to get in New Jersey, probably not easy to get anywhere. It's sad to think that these agencies designed to help our children have their hands tied by bureaucracy. We as Americans are reaching out to the people devastated by the earthquake in Haiti yet we don't help our own children. Even I made a donation to help in Haiti, of course that was before I lost my job on Monday along with our medical insurance.

It's been a year, a long long year without progress, without help, with one agency telling me to talk to another agency who tells me to talk to another agency. Now my new job is to find a job along with trying to find help for my little boy before it's too late.

I did it now,,,,,,,,,,

2009-02-26T13:35:00.002-05:00

I hung up on the school district child study team person who is assigned to us. We have a new person this year who doesn't have a clue about Autism or Timmy. We have been going back and forth for months, everything I say to her she tells me "I have to check with my supervisor". I have repeatedly asked her for this supervisor's name and she won't give it to me. Today I got so frustrated with her, she tried to tell me that Timmy needs socialization and that the program the district is willing to pay for will give him that.

The program is 4 hours per day for 5 weeks, 3 days are spent going on field trips to various locations, 2 days are spent having cookouts, water fights, etc. If we are lucky he gets 30 minutes a day of education. He is then brought to his daycare after this "school" day and when he arrives all of the older children are off on field trips and he is stuck in a 4 yr old room during nap time. Talk about setting him up for failure! He hates nap time, he needs to be with children his age and he will miss all the bonding and fun they will have all their field trips all summer. How is this better for him than an overnight camp with 1-2 hours of one on one tutoring daily and then being with the rest of the campers? I have found a camp which specializes in "communication and social disorders", basically, PDD-NOS, Autism and ADHD and will send him there for the summer.

How can this woman who has spent a total of maybe an hour with my child tell me what is best for him? This woman has now told me to write another letter to the director of Special Services in my district again. No matter that this person hasn't responded to any other letter sent to her. No matter that my child is transported on a bus with teenagers who have slapped him, picked on him, stolen from him and taught him cuss words and all kinds of other special things no 7 year old should even know about. I guess now I have to send this next letter to this director who ignores me certified and registered and maybe this time she will pay attention. Some how I seriously doubt it.

So I did it, I said to her "I am done speaking with you today" and I hung up before I called her the young inexperienced incompetent person I would have if I stayed on the phone, let me tell you it was coming...

Ok so maybe I was a bit stressed, I am getting nailed for ambulance transports to hospitals this past year for Timmy. The ER's insisted on transporting him to the inpatient hospital but failed to put on the bill it was an emergency transport and didn't get authorization from insurance to transport him. Had I failed to allow them to transport Timmy they would have put a 7 day hold on him and done it anyway. It's just all so frustrating and it's such a roller coaster, Help I don't want to be on this ride anymore,,,,,,,,,,,,,,

My Award - Sisterhood/Triple Award

2009-02-21T07:22:00.007-05:00

My blogger friend Stefanie at "I Brought You In" and Mom's Most Wanted gave me this award for choosing to make a difference in someones life. It's so sweet of her to think of me and I appreciate her kindness and her blogs! Stefanie was even kind enough to guide me through the "award" process, how cool is that?

There are the rules that go along with accepting this award:

1. Put the logo on your blog or post.
2. Nominate 10 blogs which show great Attitude and/or Gratitude(If you don't have 10, its ok.)
3. Be sure to link to your nominees within your post.
4. Let them know they have received this award by commenting on their blog.
5. Share the love and link to this post and to the person from whom you received your award.

Logo - Got it after Stef told me what to do!
Link to the other post - I think it's working!
10 blogs - Ok, here are some, random order

1. Dear Noah - what a great idea to write to your child like this!
2. A Devonshire Design - My baby sister who got me to blog
3. Living Graciously in 3/4 Time - A Wonderful Independent Strong Woman who is so inspirational
4. Mom - Not Otherwise Specified - a wonderful special mom to a special child
5. GFCF Free and Not Starving
- a special mom who does everything she can to help her special child and then shares it with us!
6. Who says 8 is enough? - What an inspirational family!

More to come, I need to take care of Timmy right now!

Let's hope they pass this bill, it's time for a change

2009-02-20T22:45:00.002-05:00

Nevada leaders are discussing a bill this legislative session could change the lives of children with autism and those of their families as well.

Assembly Bill 162 would mandate insurance coverage for autism screening and treatment. It can cost as much as $40,000 a year for effective treatment and right now many providers refuse to cover it. Proponents say if we don't pay it now, we'll pay ten times the amount or more later.

Lawmakers, autism advocates, and insurance companies are close to making the bill a reality.

Four-year-old Cameron Kmetz has autism, but you wouldn't know it. Two years of therapy, called behavioral analysis, has transformed him. When Cameron was diagnosed with autism, he couldn't speak. He wouldn't engage with other children and he withdrew into himself.

But now he plays with other kids his age, speaks in full sentences, and laughs... a lot.

Cameron's parents, Marcia and Rick Kmetz, credit his progress to intensive therapy. Cameron logs nearly 30 hours each week with five therapists. The treatment is expensive.

Explains Marcia, "I knew in my heart that this was the right program, that this was going to be the answer for my child, and then he (therapist) said it costs $2,000 a month. We both broke down in tears because we couldn't afford it. We couldn't think about affording it and we knew we had the answer in front of us, but we couldn't have access to it. "

The Kmetzs do receive some help from The Sierra Kids Foundation, but ask other families who have children with autism and they will tell you the burden is a heavy one.

"Therapy for my son is costing $30,000 a year and we just cannot afford that for much longer," said Wendy Hruska, who is caring for a child with autism.

Said parent Kevin Richards," I work six days a week. A lot of the time in the evenings, I take care of the boys so Toni (spouse) can go to work so we can make as much money as we possibly can. Even with as much money as we are making, it still doesn't come up with as much as we need to help Tyler and give him everything he needs."

A piece of legislation could provide financial relief to thousands of Nevada families coping with autism. Assembly Bill 162 would mandate insurance for autism treatment. It's treatment that is, according to experts, vital to children who suffer from autism. That treatment could allow them to live productive lives and become contributing members of society.

The bill has wide support from both Democratic and Republican lawmakers. 49 of the 63 have signed on.

Ralph Toddre is a member of the Nevada Commission on Autism Spectrum Disorders. He is optimistic that teamwork will help pass this legislation.

The legislative team working on this, Assembly-people Leslie, Conklin, Orenschall, and under the direction of one of the best referees in the state, Speaker Buckley - they want this to happen and want to help our kids. It's going to be us working together with not only the legislature, but insurance industry and advocates and I think we can all get together and come up with something that makes sense for everybody, but keeping in mind it's for the best interest of kids and families.

Toddre believes it is those kids and families who will motivate the right people to do the right thing.

We do need to get this done. We do need to get this done this time. It's the right bill at the right time and I think everyone involved believes that both the advocates and insurance industry. I hope when this is all over I can sit there and say, see, I told you, people do do the right thing. If I can't, then shame on all of us.

If the bill passes, Nevada would join a growing number of states that require insurance coverage. Three other pieces of legislation concerning autism are currently being drafted in the state legislature.

Found at this link

And more here

Awareness and detection have grown over the years, but is that the whole story? It’s an issue made timely by insurance debate

By Marshall Allen

Fri, Feb 20, 2009 (2 a.m.)
Sun Archives

* Insurers likely to get bill for autism (2-11-2009)
* No money, no treatment (12-15-2008)
* 5,000 autistic Nevadans, two bills that could help them (6-2-2007)

Sun coverage

* Archive of Sun health stories

Autism and its related disorders are confounding parents, health advocates and scientists. And now, state legislators want insurance companies to step in and help.

The disorders are difficult to identify in children because there is no biological test to confirm their presence. Thus, “autism spectrum disorders” emerge as an ominous specter during early childhood years. An autistic child may respond to the sound of a refrigerator, but not his mother’s voice. He may stare off into space, but never make eye contact with his sister. His senses may by hypersensitive, to the degree that he throws tantrums around bright lights or loud noises.

Identifying the disorders is complicated by the fact that they share characteristics — often causing an impairment in socialization — but don’t share the level of severity. A child with Asperger syndrome may look and sound normal but be unable to recognize social cues, while a severely autistic child may be totally unable to speak.

In hindsight, the signs are clear. But in the course of discovering the problems they are muddled. It can take years before parents realize a child has an autism-related developmental disorder, though experts say it can be reliably diagnosed by age 3.

Once the disorder is diagnosed, early intervention is essential to ensure a child’s development isn’t stunted. Usually this takes the form of occupational and speech therapy that may cost parents tens of thousands of dollars a year out of pocket.

Democrats in the Nevada Assembly introduced a bill this week that would require insurance companies to cover the cost of therapy. Similar legislation has passed in other states. Insurance companies complain that providing autism coverage would increase premiums, which may prompt some employers to stop providing insurance.

Autism spectrum disorders have received increased national attention as their diagnosis has increased. When autism was first described, in 1943, it was assumed that it was a low-incidence disorder, and initial studies in the 1960s suggested the disorders affected perhaps five in 10,000 children, said Catherine Rice, director of the Center for Disease Control and Prevention’s national center for birth defects and developmental disabilities.

In the early years, however, only severely impaired children were placed in the autism spectrum. As researchers have learned more about the diseases, they have broadened the definition of what qualifies as an autism spectrum disorder — and today studies suggest about one in 150 children have some type of autism spectrum disorder.

So are there more autistic children, or is the broadening definition causing more children to be classified as autistic?

It’s impossible to say for sure, Rice said. Awareness of autism is increasing, which leads to more effective identification, but it’s also possible that it’s increasing. Even with the more inclusive definition, the number of autistic children seems to be on the rise, Rice said.

It’s not known what causes autism.

Researchers say environmental factors could contribute to the onset of the disorders. Studies have linked autism to air pollutants, pesticides, pet medications and even drugs used in the birthing process, such as Pitosin, Rice said.

“It could be anything from the exposures in our physical surroundings — chemicals around us in homes, clothes, products, medications we take and food we eat,” Rice said.

Rice said the recognition that environmental factors play a role in causing autism shows that there is common ground in the debate about whether vaccines play a role in the disorders.

“The debate has been more polarizing than it is in reality,” Rice said. “Hopefully there is common ground in recognizing that autism is more complex. It’s not going to be solely explained by biology or genetics or a single environmental cause.”

at this link

More drugs for our Autistic Children? Are drugs the answer?

2009-02-20T22:42:00.002-05:00

Washington, Feb 5 : Researchers at Brown University have discovered a structure in the brain called the Fragile X granule, which offers a potential target for treating certain kinds of autism and mental retardation.

Led by Justin Fallon, professor of neuroscience at Brown, the study''s finding opens a new line of research about potential treatments for autism.

Autism is a neurological disorder that strikes young children and can impair development of social interaction and communication.

"If you are going to treat the disease you need to be able to target the defective elements. The Fragile X granule offers such a target," said Fallon.

Although, autism can be caused by a variety of genetic factors, Fallon''s lab focused on one particular area - the Fragile X protein.

If that protein is mutated, it leads to Fragile X syndrome, which causes mental retardation and is often accompanied by autism.

It is believed that autism and mental retardation are diseases of the synapse, the basic unit of information exchange and storage in the brain.

The researchers focused their study on the Fragile X protein and synaptic connections in healthy mice.

By examining specially prepared sections of mouse brain tissue with high-powered light and electron microscopes, researchers made a number of determinations.

First, they showed that Fragile X exists at the pre-synaptic, or sending side of the synapse, an area that had not been widely studied.

"For over 25 years the field has focused almost exclusively on the post-synaptic, receiving side. Almost no one has looked at the pre-synaptic side, as it was not thought to be involved in Fragile X," said Fallon.

This discovery is important because scientists, if they are to treat Fragile X syndrome, autism or mental retardation must know where the functional defect actually is. Fallon''s research helps fill in a potential gap.

"The implication is that pre-synaptic defects could contribute to the pathology in autism in Fragile X," said Fallon.

Also, researchers found that Fragile X protein is only present in a small fraction of what are known as pre-synaptic specializations.

The pre-synaptic Fragile X protein also turned out to be present in microscopic granules, which look like tiny pebbles under a high-powered microscope. Understanding the Fragile X granule is important in this context because the finding could lead to more targeted treatments.

The researchers hypothesize that the granules contain multiple RNAs, or sets of genetic information to help modify the synapse during learning and memory.

If their theory is proven correct, the granules might serve as pinpoint targets for eventual drug treatments of autism.

The study, titled "The FXG: A presynaptic Fragile X granule expressed in a subset of developing brain circuits," is published in the recent issue of the Journal of Neuroscience. (ANI)

I read this at this link

An Award?

2009-02-20T14:09:00.002-05:00

My blogger friend Stefanie over at her I Brought You In Blog got an award. Stefanie also has another blog called Mom's Most Wanted which has all kinds of cool stuff to check out and giveaways. I think her award was for her Mom's Most Wanted site.

I think she in turn is giving me an award for making a difference in someone's life. It should be an award for the "new lame blogger who doesn't get what she is suppose to do now". So I in turned emailed Stefanie to get a better idea of what I am suppose to do. When I know more you will also but in the meantime check out Stefanie's blog and her Mom's Most Wanted blog.

Hope everyone has a Happy Friday!

Research for Timmy and other special kids

2009-02-19T21:54:00.002-05:00

I have spent a ton of time researching different things for Timmy. Diet, ABA, HBOT, Meds, Camp, Schools, you name it I have googled it. I wish I had the time and money and patience to take everything I have pulled together and learned to write a book for people who are struggling in their fight for their children. The thing is I know there is so much more I have to still learn but I have so much I can share. I am thinking of starting another blog to just document each agency I find, each PDF of services of I have located, each directory of phone numbers and agencies, each special school and camp out there. I just think it would be so awesome to have everything in one place so instead of taking years to find things someone could go to the site and get a link to what they need or a hint of where to begin. I wonder if any of you in blog land would be interested in helping me with this?

Let me know, you know how to find me...

Wednesday Word - Compassion

2009-02-18T12:41:00.002-05:00

This word is something I strive to achieve on a daily basis. The following quotes touched me as I researched my word today:

Viktor Frankl:

We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.

Martin Luther King, Jr.:

I look forward confidently to the day when all who work for a living will be one with no thought to their separateness as Negroes, Jews, Italians or any other distinctions. This will be the day when we bring into full realization the American dream -- a dream yet unfulfilled. A dream of equality of opportunity, of privilege and property widely distributed; a dream of a land where men will not take necessities from the many to give luxuries to the few; a dream of a land where men will not argue that the color of a man's skin determines the content of his character; a dream of a nation where all our gifts and resources are held not for ourselves alone, but as instruments of service for the rest of humanity; the dream of a country where every man will respect the dignity and worth of the human personality.

Unknown:

It is lack of love for ourselves that inhibits our compassion toward others. If we make friends with ourselves, then there is no obstacle to opening our hearts and minds to others.

Patience - Key Word for Today

2009-02-17T08:36:00.004-05:00

I decided to think about keywords that can help in our daily lives and this is a big one for me. I need to be more patient. I found a site where I can put the keyword I am thinking about and get quotes from other people, below are some of them, today it's all about patience.

Patience Definition
He that can have patience can have what he will.
Benjamin Franklin

Patience is the companion of wisdom.
Saint Augustine

Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.
Harriet Tubman

Have patience. All things are difficult before they become easy.
Saadi

Adopt the pace of nature: her secret is patience.
Ralph Waldo Emerson

Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace.
Victor Hugo

If patience is worth anything, it must endure to the end of time. And a living faith will last in the midst of the blackest storm.
Mohandas Gandhi

You must first have a lot of patience to learn to have patience.
Stanislaw Lec

The greatest power is often simple patience.
E. Joseph Cossman

How many a man has thrown up his hands at a time when a little more effort, a little more patience would have achieved success.
Elbert Hubbard

How can a society that exists on instant mashed potatoes, packaged cake mixes, frozen dinners, and instant cameras teach patience to its young?
Paul Sweeney

Everything is out there if you know how to find it, and have the patience. I don't and haven't, but that's my problem.
Tom Holt

For anything worth having one must pay the price; and the price is always work, patience, love, self-sacrifice - no paper currency, no promises to pay, but the gold of real service.
John Burroughs

Patience is bitter, but its fruit is sweet.
Jean Jacques Rousseau

Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better take things as they come along with patience and equanimity.
Carl Jung

I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.
Lao Tzu

Knowing trees, I understand the meaning of patience. Knowing grass, I can appreciate persistence.
Hal Borland

Patience, n. A minor form of dispair, disguised as a virtue.
Ambrose Bierce

Endurance is patience concentrated.
Thomas Carlyle

The marvel of all history is the patience with which men and women submit to burdens unnecessarily laid upon them by their governments.
George Washington

Patience is the best remedy for every trouble.
Titus Maccius Plautus

Who ever is out of patience is out of possession of their soul.
Francis Bacon

Our real blessings often appear to us in the shape of pains, losses and disappointments; but let us have patience and we soon shall see them in their proper figures.
Joseph Addison

I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness and the willingness to remain vulnerable.
Anne Morrow Lindbergh

To bear with patience wrongs done to oneself is a mark of perfection, but to bear with patience wrongs done to someone else is a mark of imperfection and even of actual sin.
Saint Thomas Aquinas

Genius is eternal patience.
Michelangelo

All men commend patience, although few are willing to practice it.
Thomas Kempis

The two most powerful warriors are patience and time.
Leo Tolstoy

The keys to patience are acceptance and faith. Accept things as they are, and look realistically at the world around you. Have faith in yourself and in the direction you have chosen.
Ralph Marston

It takes patience to appreciate domestic bliss; volatile spirits prefer unhappiness.
George Santayana

Endurance is nobler than strength, and patience than beauty.
John Ruskin

Patience, persistence and perspiration make an unbeatable combination for success.
Napoleon Hill

Our patience will achieve more than our force.
Edmund Burke

It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.
Julius Caesar

I do not have much patience with a thing of beauty that must be explained to be understood. If it does need additional interpretation by someone other than the creator, then I question whether it has fulfilled its purpose.
Charlie Chaplin

Patience will achieve more than force.
Edmund Burke

Abused patience turns to fury.
Thomas Fuller

I believe there's too little patience and context to many of the investigations I read or see on television.
Bob Woodward

It is strange that the years teach us patience; that the shorter our time, the greater our capacity for waiting.
Elizabeth Taylor

Everything that slows us down and forces patience, everything that sets us back into the slow circles of nature, is a help. Gardening is an instrument of grace.
May Sarton

You have to find the peace and patience within yourself to be a model and an example to others and not judge.
Judith Light

The key to everything is patience. You get the chicken by hatching the egg, not by smashing it.
Arnold H. Glasow

If you have confidence you have patience. Confidence, that is everything.
Ilie Nastase

Patience is the best medicine.
John Florio

Patience and tenacity are worth more than twice their weight of cleverness.
Thomas Huxley

Patience can't be acquired overnight. It is just like building up a muscle. Every day you need to work on it.
Eknath Easwaran

As anyone who has ever been around a cat for any length of time well knows, cats have enormous patience with the limitations of the human kind.
Cleveland Amory

As I pass it, I feel as if I saw a dear old mother, sweet in her weakness, trembling at the approach of her dissolution, but not appealing to me against the inevitable, rather endeavouring to reassure me by her patience, and pointing to a hopeful future.
Thomas Edward Brown

Humility is attentive patience.
Simone Weil

Patience and Diligence, like faith, remove mountains.
William Penn

Writing is good, thinking is better. Cleverness is good, patience is better.
Herman Hesse

There is no substitute for hard work, 23 or 24 hours a day. And there is no substitute for patience and acceptance.
Cesar Chavez

I grow plants for many reasons: to please my eye or to please my soul, to challenge the elements or to challenge my patience, for novelty or for nostalgia, but mostly for the joy in seeing them grow.
David Hobson

Good ideas are not adopted automatically. They must be driven into practice with courageous patience.
Hyman Rickover

My biggest weakness is patience, wanting to see things happen too quickly or get changes in place right away. Not having the patience to let things develop.
Paul Gleason

Have patience with all things, But, first of all with yourself.
Saint Francis de Sales

Reconnecting - Off Topic Post

2009-02-15T10:51:00.005-05:00

I found a person very dear to me I lost contact with almost 30 years ago yesterday on Facebook. She has this special place in my heart and always has. It was amazing to hear her voice, hear about her life, her children, her husband and her triumphs and struggles. I am so proud of the woman she has become. Her children are both in college and doing well. She is now happily married to a wonderful guy and her Mother is still the pain in ass she was when we were younger! She has had some tough medical things come up and she has dealt with them and is dealing with them the way I would expect her to, head on and strong. I wish she lived closer to me so I could give her a hug once in a while. I wish she was closer so she and Timmy could be close. She was like a daughter to me and held me up when I was falling.

It makes me realize that there were some really special people in my life journey so far. People who I lost touch with physically but will always be so special in my heart. With the internet and facebook, myspace, classmates, etc it's easier to reconnect and find these special people. Go out there and look for them, you can never have too many people in your life to love or to love you back. It's worth the effort to find them...

Timmy slept in his own room

2009-02-14T14:04:00.000-05:00

WOOHOOOOOOOOOO! Timmy slept in his own room all night! Let's celebrate!

Bedtime tonight is the night

2009-02-13T16:10:00.002-05:00

For the past 2 years I have been unsuccessful getting Timmy to sleep in his own room. I have tried bribery, I have tried cajoling, I have tried threatening, you name it I have tried it. We have spent the last 3 weeks talking to the therapist about Timmy sleeping in his own room. Tonight is the night he has promised he will do it. He is currently parking himself on a lounge chair in my bedroom, he isn't in my bed but still I would like to have my own room at night and be able to read a book or just lay quietly and be alone.

So tonight when I pick him up we will again discuss what we have been talking about seriously for 3 weeks. Last night he tried to get me to move it to Saturday night and I refused. I am sure it's going to be a tough night for both of us but there is a new Pokemon movie on at his bedtime tonight so I am hoping that helps. I am not giving in and it's may get a bit ugly but he needs to do this and I need some space.

So all my friendly bloggers say a prayer for us tonight, we need all the help we can get. Oh and BTW we still have no BA.....

Happy Wednesday,, well not happy but Wednesday

2009-02-11T09:53:00.007-05:00

Update: So I get a call from the new BA who barely speaks english, at this point I am so frustrated that I have called my CMO worker and requested she pre-screen this person before I have them enter our home and lives because I am so cynical with the process I may not be fair. More to come,,,,

So here's the good news, my sister's blog was feature on SITS today, way to go Sistah!

For me the saga continues to get a Behavioral Assistant for Timmy. Per the course we had a phone call and emails last week with the promise of a new BA. Well on Thursday at 9 pm after another 3 weeks without a BA this new person calls me. I find out he lives over 2 hours away and once he hears where we live he is not able to work with us. So back to square 0 again! On Friday after numerous calls to the CMO they tell me they will search for another BA for us. Monday nothing, Tuesday a.m. I get an email saying the following "Although we have not been able to find a BA for you yet because we are looking for one and anticipating finding one very soon we will not authorize any additional Therapist hours" GRRRRRRRRRRRRRRRRRRRRR. Well those that know me know that that email just infuriates me so I start calling and emailing. Then I get an email about an hour later stating they found a new agency and the referral has been sent, I will be getting a call in the afternoon from this new BA. So tick tock tick tock, not very patient Marcie is waiting for the call and guess what, surprise of all surprises, it doesn't come. Nothing, Nada, Nyet.

This morning I pick up the phone and call the office of the director of my local CMO, of course I can only speak with her Admin Assistant who assures me she will look into it. After 30 minutes, I get another email from the CMO, this time stating that they are sorry but the agency never got the referral but it's being resent and they have assigned a BA. So me being me writes back, well that's nice and I hope someone will make sure this person knows how to be a BA and is reviewing their credentials to make sure this one doesn't call my child a Brat and has actually worked with a child on the Autism Spectrum before. I am now at the point where I am not going to have people who don't know what they are doing come in and out of our lives and cause chaos. I have some expectations here and I am not willing to sacrifice my expectations for an hour break because guess what, the wrong person again could be the one who sends Timmy over the edge.

Well wish me luck, I will continue to make phone calls and raise havoc with these people today in between trying to make a living! Oh and by the way, I signed Timmy up for Summer Camp, I still don't have the funds for it in place but hopefully I will find a way to make it happen, not just for him but for me too!

Finding the money for Summer Camp

2009-02-08T15:28:00.003-05:00

I found a wonderful 7 week overnight summer camp program that would welcome Timmy. They offer ABA, education and socialization, these are all the things that Timmy needs. Now I just have to figure out how to come up with 8,000 by the end of April. It's so hard to do everything financially for him alone. His medications and doctors not to mention hospital co-pays, homeopathic doctors, special diet are all catching up with me now. I make a decent living but with his needs it's a paycheck to paycheck experience now. I have burned up the savings I had just to get him where we are now. There are some options, we could move to a smaller less expensive place but moving for him is traumatic and it would cost me 5,000 or more just to move us. I am going to see if I can get the school board to help pay for this since Timmy is suppose to be in year round school. If I could just get 1/2 of the money from another source I would live on PB&J for the next 6 months to come up with the other half. Anyone have any brilliant ideas?

Opening the Gates - An amazing young man

2009-02-07T10:34:00.004-05:00

Original Article found at the Jewish Journal

By Jacob Artson

Jacob Artson, 16, gave the following speech last May at a conference in Los Angeles titled "Opening the Gates: Building Inclusive Congregations and Communities for Jews with Special Needs," where he shared the keynote address with his father, Rabbi Bradley Artson, dean of the Ziegler School of Rabbinic Studies at American Jewish University. The conference was co-sponsored by The Jewish Federation, HaMercaz, The Board of Rabbis, the Bureau of Jewish Education and the Kalsman Institute on Judaism and Health.

Hi. My name is Jacob Artson and I am a person just like you.

I am part of a wonderful Jewish family, I go to our local public high school, where I am in mostly regular classes, I play sports, I love to travel, and I enjoy hanging out with my friends and girlfriend.

The only difference between you and me is that I have lots of labels attached to me, like nonverbal, severely autistic and developmentally disabled.

It is true that I have some challenges, but there are lots of myths and misconceptions about autism out there. Many purported experts claim that individuals with autism are not interested in socializing. This is totally ridiculous. I love people, but my movement disorder constantly interferes with my efforts to interact. I cannot start and stop and switch my thinking or emotions or actions at the right time. This can make being in a big group very lonely and that is the worst thing about autism. So next time you see someone like me at your synagogue or at your event, remember that they probably feel really lonely and you could be the person to make their day by smiling at them and letting them know that they exist.

Another myth is that the majority of kids with autism are mentally retarded. In fact, our bodies are totally disorganized but our cognitive skills are intact and our minds are hungry for knowledge.

Every person alive is encumbered by challenges and blessed with gifts. I used to think that my ratio of challenges to gifts was higher than most, but now I realize that my challenges are just more obvious. I have learned that there are actually many positive aspects of autism. For example, I get a VIP pass at Disneyland and I get to kiss all the beautiful counselors at camp and pretend I don't know any better. On a serious note, not being able to speak means that you spend lots of time listening.

In fact, much of what I know I've learned from listening to conversations that other people didn't think I could hear, or listening through the wall to what the teacher in the next classroom was saying. People often ask me how I became such a good writer. The answer is that my inability to speak gives me lots of time to contemplate and imagine and also forces me to hear everyone's perspective and think about it because I cannot interrupt or monopolize the conversation like people who have oral speech.

In the autism world we say that not being able to speak doesn't mean that you don't have anything to say. In my experience, the converse is also true —just because you can speak doesn't mean that you have anything worth saying.

Since this is a conference on including people with disabilities in the Jewish community, I want to share with you the ways in which autism has affected my participation in Jewish life. I have found great support in God, Torah, and the Jewish community. The greatest single day of my life was my bar mitzvah because everyone there accepted and celebrated me for exactly who I am. At the end of the service, everyone came up on the bima for Adon Olam. I will carry in my mind and heart forever the picture of everyone there smiling at me. I had wonderful experiences when I was in a Jewish preschool and later kindergarten, even though my teachers had never had a child with autism in their class. What made those experiences successful was the way the teachers modeled inclusion for the other kids. They treated me as a person made in God's image and not as different in any way. In kindergarten, I had amazing peers. They were mostly Persian and inclusiveness is engrained in their culture. They tried all year to get me to interact with them even though I was usually too excited to focus. I've also had wonderful buddies from The Friendship Circle, attended several Jewish camps, participated in a Jewish musical theater program called The Miracle Project, and prayed at Koleinu, a service at Temple Beth Am for kids with special needs.

But there have been obstacles as well. I have never attended religious school because I was bored in the special ed Hebrew school and the typical classes did not allow a place for me to engage either. When I was younger, I went to synagogue every Shabbat but the other kids ignored me. As a teenager, I have had some wonderful Jewish experiences at camp and elsewhere, but the first reaction is that I am too disabled to attend, or that I don't participate once I'm there. So whether I'm invited seems to depend on the particular director that year. I have noticed that when I attend Jewish youth group events, the volunteers seem to pay attention primarily to the verbal kids, so I am lonely. I suspect that this stems from lack of exposure, but their youth leaders could do a better job of modeling inclusion too.

The public schools and secular programs I have attended have been much more welcoming. The public schools are overwhelmingly black and Hispanic, and they, too, seem to have a culture of inclusion. The kids at school treat me like family and pull me into everything they do. I go to a secular camp for autistic kids in Aspen every summer and everyone is welcome there. We do cool things like go tubing and white water rafting and I am able to participate in everything because I know they will work with me where I'm at.

In my secular inclusive sports program, Team Prime Time, the director has taken the time to allow for sharing on several levels, so the kids all respect me for my intelligence and understand how hard I'm working to make a basket or kick the ball. I have also been part of their new volunteer training and have spoken about autism at school, but I have never been invited to participate in volunteer training for any Jewish program I have attended.

So here is a final thought I would like to leave you with:

The best peers and aides I have had didn't have any special background. It doesn't actually take any training to be a leader who models inclusion. It just takes an attitude that all people are made in God's image and it is our job to find the part of God hidden in each person.

I used to get very upset and offended at the idea of being someone's mitzvah project or community service project. But now I see that I also have a role to play in helping create the messianic future. It is easy in our affluent society to become too dazzled by the material opportunities and the privileges that we have been born with. But I have had to struggle from the day I was born to do many things that other people take for granted. Because of that, I have experienced God's love in a way most children have not. So maybe we are each other's mitzvah project because I can help them see the glories of the world that they have never noticed, and they can teach me how to look like other kids. All in all, who is getting a greater benefit? In the end, together we bring God's glory to all of humanity.

I can only say WOW! This is one amazing young man, share his story with those you love, with those you know and with those who don't understand our children.

Happy Friday, the lack of a BA saga continues,,

2009-02-06T08:08:00.003-05:00

Happy Friday everyone.

Timmy and I have not been able to find a consistent, knowledgeable and stable Behavioral Assistant since his release from the hospital in November. It's been one calamity of errors after another and it is continuing to happen. It's been 3 weeks since our last flaky BA dropped out of the picture. She was a very nice woman but she couldn't seem to come to our home on a regular basis and put in the hours that we have been allocated. Basically in the 3 weeks she was with us instead of the 30 hours we should have gotten we got 8 hours and lots of no shows. So my CMO worker fired her over a week ago and said she would get us another one. Last night at 9 pm the phone rings and it's a BA but this gentleman lives 1-1/2 hours away and isn't able to commit to us, so we are back to square one with no BA. As all of you are aware my guy lives for consistency and although we have been promised the assistance we are not getting it. It sucks when someone is suppose to be coming over to work with him, he is expecting them and counts the hours and minutes until their arrival and they are a no-show. Guess who has to pick up the disappointment pieces being left behind? Yeap yours truly.

The CMO wanted and tried to push me to put him into residential care, when I refused they promised to provide us with certain in home services. You see the Mission Statement of the CMO in New Jersey is suppose to be keep the family together and the children at home yet here we are 3 months after the promises and the last discharge with very little of what was promised to us to make Timmy successful.

Today I am going to call my CMO worker again and her boss again. I am going to be calm, I am going to be calm and I am going to be calm. I will ask for what was promised to my boy in a kind way and not lose my temper or my patience. I will treat them with respect even though they are giving us none. Perhaps if I do this they will finally help me to help Timmy.

More free samples,,

2009-02-05T08:29:00.001-05:00

I am on a mission now,,,

Total Cereal

More Quaker Oats Stuff

Stetson Suede

Hyland Leg Cramp Relief

Pillsbury $10.00 Coupon Book

Paradise Island Gourmet Popcorn

Noevir Skin Care

Walmart Freebies - Always Changing

Freebies

2009-02-02T14:35:00.004-05:00

Ok so I am bored at work and started looking for freebies, yes free samples. Here you go:

Quaker True Delights
http://www.quakertruedelights.com/

True Diamond Vodka
http://www.hottengroup.com/diamondvodkas/

Bare Naked Granola
http://www.bearnaked.com/postcards/sample.asp

Fabreeze Sport
http://www.mapmyrun.com/febreze

Oxyfresh Toothpaste
http://www.knockoutbadbreath.com/site/1395773/page/567211

Mr Clean Magic Eraser
http://mrclean.com/en_US/sharethelove/freesignup.do

Enjoy!

Following the blogs,,

2009-02-02T07:31:00.003-05:00

This is totally off subject but then again maybe it isn't. I totally am immersed in the world of blogging right now. I find it amazing how many talented, funny and real people there are in the blogger world sharing their stories with us. I started this blog as a vent for my Fight for Timmy, I feel like I drive those around me crazy repeating the same stories over and over and non stop bitching to try and get the help and services we need so someday Timmy can be all he can be. That may be the clerk at the 7-11 down the street but that's ok. I just want him to be happy and successful in whatever path he chooses well except for being a criminal! Any back to the bloggers out there.

I want you all to know that you give me something to smile about on those days when I want to give up, you give me something to laugh about on those days when the world seems to be crashing around us but most of all you make you remember how lucky I am because as big as all of my problems seem to me they are really minuscule compared to what some of you are going through. So brother and sister bloggers out there, thank you for being my inspiration and support system!

Sometimes,,,

2009-01-30T15:02:00.004-05:00

I feel crappy because I want Timmy to give me a real hug

I feel crappy because I want Timmy to be happy and he isn't very much

I feel crappy because I need space and don't get it

I feel crappy because I am just tired of fighting

I feel crappy because his parents aren't around and I am left to pick up the pieces

I feel crappy because I want to be selfish and do things for myself and can't

I feel crappy because Timmy doesn't have many friends

I feel crappy because I have already raised my children and now at 50 (almost 51) I am doing it again, alone and with a special child and I don't want to be doing it( I read this back to myself and it sounds horrible, it's not that I don't love him with all I have, it's just I don't know if I can give him everything he needs and it sucks)

I feel really angry that the school district is putting him in the most restrictive environment and not looking at where he is today

I feel happy because Timmy is giggling and smiling

I feel happy because Timmy is actually in a mainstream afterschool program and doing well for the 1st time in 3 years around other "normal" children

I feel happy because I can read a book for an hour without 60 interruptions (yes it's at 10pm but I'll take it)

I feel happy because we finally got a therapist who is there and consistent

I feel happy because Timmy looks me in the eye now

I feel happy because we have a diagnosis that makes sense where before it didn't

I feel happy because of all the comments and feedback and realize how blessed and lucky we are

I feel happy because I have a job and an income to support us

I feel happy because I am alive

I want some Privacy,,,,

2009-01-29T16:05:00.002-05:00

Why oh why can't my boy give me any privacy? He is 7-1/2 now and still is stuck to me like glue. He follows me from room to room to room. He bangs on the bathroom door and says "I just have to ask you something". He refuses to sleep in his own room at night and goes into total meltdown mode for hours when I try to get him to, instead he sleeps on a chaise lounge in my room. He will not even go to the room to bed unless I am in there with him. I have bribed this child with everything in the book to get him to sleep in his room. He hasn't even had the tooth fairy come because she won't come if he isn't in his bed. Now if he spends the night at my sister's house he sleeps in the guest room no problem. Why is it that he is so attached to me when I am there? He will go places with other people, he leaves me without a care in the world but when he and I are together he is all over me like a fly on sh*t. I feel like such a complainer but I really need some space. I would love him to just sleep in his room so I have some time to myself in the evenings. Is that asking for too much? Am I expecting too much from him? Some days raising this little boy I love so much is just overwhelming!

Maybe just maybe if we could get a consistent, stable Behavioral Assistant this would happen. I am not looking for miracles, just a little space to breathe in and regroup at home!

The 25 facts about me since I was tagged post...

2009-01-29T12:46:00.003-05:00

Thanks to my sister I have to think of 25 personal facts I want to share,,, ok here goes,,,

1. My sister and brother went gray way before me and now it's finally my turn to visit the hair dye guy at least every couple of months since it's not too bad yet but I still hate it!

2. I really like being an IT Project Manager most days and feel lucky that I am doing something I like and get paid for it.

3. I love to go to all-inclusives in the Caribbean or Mexico and just pamper myself.

4. I am a terrible document writer

5. I wish I would have gone to college and not learned everything via the school of life and hard knocks.

6. I want to buy a house but I don't know where I really want to live.

7. I spend way too much time alone with Timmy!

8. I am single and intend to stay single, I have no energy to have to take care of anyone else!

9. If I call you my friend you are my friend for life well unless you screw me over!

10. I am a carb junkie and could live on bread and pasta!

11. I don't like Sushi very much, it's a texture thing.

12. I want to go buy new living room furniture but the thought of dragging Timmy through furniture stores while I look terrifies me.

13. I am a pushover for those I love.

14. I am extremely mechanical and love building legos.

15. I really love new toys, flat screen TV's, video games, etc

16. I wish I could have had more time with my parents. You don't know what you have until it's gone

17. I have been the family gypsy and it's hard for me to stay in one place for too long.

18. I really want to take a trip across Europe

19. I am glad Obama is the President, let's hope he doesn't let us down.

20. I wish I could win the lottery and get Timmy all the help he needs, I never feel like I am doing enough to help him cope with his disability.

21. I can be brutally honest and have spent years learning how to curb my tongue and be a little more kind and patient with people.

22. I keep a lot inside of me and don't really share it with anyone because to me it would mean a crack in the independence armor.

23. I have a strawberry mark and have horrible memories of going to the doctor and it being burned off when I was little.

24. I am enjoying blogging, it's a cheap therapist!

25. I wish everyone would get along (middle child syndrome)and if you don't like someone just stay away from them because not everyone likes you or me for that matter and it's ok!

I guess it's time for me to tag someone so I am going to tag someone whose blog I ran across the other day, it's called Dear Noah

My sister tagged me

2009-01-28T15:27:00.005-05:00

So my little (younger and thinner) sister tagged me so I am tagging her back! Her name is Debie and she is my favorite sister, yes she is my only sister but she is still my favorite sister! Deb has this organizational way about her that I envy. She is so freaking organized about everything she does, her blog will show you that. Me on the other hand well I am an unorganized mess at home and no matter how hard I try to get organized it doesn't work. The really weird part of all of this is that I am a Project Manager at work and will spend all day organizing and orchestrating a project to perfection but I get home and just have no clue where to begin. Hmmmm, maybe I should pay myself for each thing I organize at home and I would get motivated to do it, Nahhhhhhhhhh.

So here is the link to my sweet little sister's blog
http://devonshiredesignltd.blogspot.com

I hope you enjoy her as much as I do!

WOOHOO, Daycare Opened up this morning

2009-01-28T11:07:00.002-05:00

So today was a school snow day and as you saw in my previous post I was looking for 144 different things to do with Timmy today but then I lucked out, daycare opened, yes they opened late but I was able to take him there to have fun and play with the other children and go to work. I mean really how bad am I, I wanted to go to work? Haha. Well I only have so many PTO days and with all the IEP meetings, therapist meetings, psych meetings, and on and on I would really like to save up my PTO so I can take a real vacation instead of a day here and a day there. So he is happy because he gets to have fun today with the other children and I am happy because I get to work and not take PTO time.

Now that's it's cold and rainy and snowing and all around yucky outside I am going to start looking for that perfect vacation for us this year. I would love to take him on a Disney Cruise but they cost twice as much as other cruise lines. Has anyone been on a Disney Cruise, what makes them so much better than a Royal Caribbean Cruise that I would pay double?

Maybe snow?? We need 144 ideas to stay busy tomorrow!

2009-01-27T11:28:00.004-05:00

It's suppose to really really snow here and I am sure if there is an inch on the ground in the morning school will be cancelled. To me this means taking another PTO day to stay home stuck in the house with Timmy. Anyone have any good ideas how to occupy him for 12 hours? He is not only PDD-NOS but is also ADHD, this means he jumps from 1 thing to another thing every 5 minutes. So any brilliant ideas will bore him after 5 minutes this means I need tons and tons of ideas for 12 hours... how many things do we need to do, let's do the math, 720 minutes divided by 5 equals 144 ideas needed. Your help would be greatly appreciated. As a matter of fact if you want to come over and participate with us in any of the 144 ideas let me know :)

Ok, I guess I should think of some kind of cool giveaway for the person who has the best of the 144 ideas needed, so I will also take ideas for a giveaway, now let's keep it reasonable folks, something around $25.00 in value??

UC Davis Study Authors: Autism is Environmental - Can We Move On Now?

2009-01-21T13:35:00.000-05:00

These days I don't know what to believe or where Timmy's PDD came from but I do know that I will keep looking for answers to help him and keep hoping some day he will recover. I read this and thought it was important to share.

David Kirby on The Huffington Post

I have always said there may be a small percentage of people with autism spectrum disorder (perhaps those with Asperger Syndrome) whose symptoms are a result only of their genetic makeup, with no environmental factors involved at all.
But a new study out of UC Davis' MIND Institute says that it's time to abandon science's long, expensive, and not very fruitful quest to find the gene or genes that cause autism alone, without any environmental triggers.
"We need to keep (environmental) studies going," Irva Hertz-Picciotto, the co-author of the study and professor of environmental and occupational health and epidemiology at UC Davis, said in a statement.
"We're looking at the possible effects of metals, pesticides and infectious agents on neurodevelopment," Hertz-Picciotto said. "If we're going to stop the rise in autism in California, we need to keep these studies going and expand them to the extent possible."
Autism is predominantly an environmentally acquired disease, the study seems to conclude. Its meteoric rise, at least in California, cannot possibly be attributed to that shopworn mantra we still hear everyday, incredibly, from far too many public health officials: It's due to better diagnosing and counting.
The autism epidemic is real, and it is not caused by genes alone: You cannot have a genetic epidemic. It really is time that we, as a society, accept that cold, hard truth.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," Dr. Hertz-Piccotto said.
The study results suggest that "research should shift from genetics, to the host of chemicals and infectious microbes in the environment that are likely at the root of changes in the neurodevelopment of California's children," the statement added.
The UC Davis Study, funded in part by the National Institute of Environmental Health Sciences (NIEHS) found that the rate of autism among six-year-olds in California mushroomed from less than 9 per 10,000 among the 1990 birth cohort, to more than 44 per 10,000 for kids born in 2000.
This increase, "cannot be explained by either changes in how the condition is diagnosed or counted," the statement said, "and the trend shows no sign of abating."
(It is important to keep in mind that almost every child born in 2000 would have received many vaccines that contained the mercury preservative thimerosal, which was not completely phased out of most - but not all - childhood vaccines until at least 2003.)
Of the 600-to-700 percent increase in autism reported in California between 1990 and 2000, fewer than 10 percent were due to the inclusion of milder cases, the study found, while only 24 percent could be attributed to earlier age at diagnosis.
There was only one logical conclusion: some thing or things in the environment had to be at play here.
I have always said that all environmental factors should be considered in at least some subgroups of autism. This position has been met with considerable ridicule. I believe that opponents are afraid that, if we start looking at toxins like heavy metals, it might one day lead back to thimerosal. Likewise, if we consider live virus triggers, we may have to take another look at the measles-mumps-rubella vaccine (which thousands of parents swear was the trigger than sent their children tumbling into autism).
Now, it's always been easier and more reassuring to tell ourselves that autism was almost purely genetic, that it was always with us at the rate of 1 in 90 men (1 in 60 in New Jersey) and that, gee, weren't doctors doing a great job these days of recognizing and diagnosis this disorder.
This pathetic groupthink has helped create hugely lopsided funding priorities in autism, where genetic studies get lavishly funded, while environmental ones are lucky to even pick up the dollar scraps left behind
"Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones," Hertz-Picciotto said. "We need to even out the funding."
I agree.
Yes, we must continue to look for the susceptibility genes that make some kids more vulnerable to environmental triggers - possibly through a diminished capacity to detoxify themselves.
But the sooner our best minds in science and medicine come to grips with the fact that these poor, hapless kids have been exposed to the wrong environmental toxins and/or infectious agents at the wrong time, the sooner we can find out how to best treat what really ails them.
It is illogical for us to oppose the study of, say, mercury exposures and autism, because it might somehow implicate thimerosal, and by extension, vaccines.
After all, heavy metal studies into autism could very well incriminate background environmental sources, but exonerate metal sources found in vaccines, such as mercury and aluminum.
And that would be a good thing for everyone.

Happy MLK Day!

2009-01-19T15:57:00.003-05:00

I have been lagging on the blogging. I think it's the after Holidays thing or maybe it's the lack of services for Timmy and no time to do anything for me. So I thought I would write a quick update on what's happening or better yet barely happening...

1. New Therapist has been introduced, she came Saturday for 1-1/2, seems nice but can't see us again until next Sunday

2. New BA came last Saturday(9 days ago) and made it back today to help with Timmy since I am working. She was suppose to come Saturday afternoon but didn't show or call. Showed up today an hour late, my sister was ready to kill me (not really) but I feel awful since she did me a huge favor taking him for the morning and she has a life and things to do for herself, so I am so sorry Deb!

3. I have no clue when we will get respite Saturday again, they keep cancelling which means I am not getting anything done because when I am home my needy shadow is with me.

4. I am working on doing the CF diet for Timmy, it's harder than it seems but I will keep starting over till we get it right! GF is on the horizon

5. I called a D.A.N. practitioner in the area and found out how expensive it is to even see them, I have no clue where I am going to come up with that money

6. I need my hair dyed really bad but when I cave in and do it from home it always looks horrible!

7. We got to spend a day with Timmy's sister Emily which was wonderful and we miss her all the time and wish we lived closer to her.

8. Timmy lost his 2 front teeth but the tooth fairy is not coming until he sleeps in his own room, he sleeps in my room on a lounger but he is rapidly outgrowing it. Let's see if he moves to the floor or his room (right next to mine)when he starts falling off this thing.

9. IEP was postponed until next Monday and the school I really want him to go to does not have a classroom available for his age group.

10. I would love to do a "service" thing today but I am just barely making it providing for Timmy so that sucks!

Ok, that kind of is a quick synopsis of the last few weeks, keep us in your happy thoughts...

Losing my WIDGETS!

2009-01-04T22:56:00.001-05:00

I am totally losing my widgets! I had all of these wonderful blogs linked to mine and I have lost them for the 900th time!! Shoot me now, back to searching for them all again. HELLLLLLLLLLLLLLLLLLP!!!!

GFCF Diet

2009-01-04T19:04:00.006-05:00

I have been doing research when possible and I am looking into the GFCF Diet for Timmy. Since I am so busy with life in general and not sure what I am getting into I found this site Gluten Free Meals which will deliver meals for us to try. I am going to order a package from them and see how he does after a week of this. I will need to supplement it with lunch for school etc but after everything I have read this is worth a try. I am in information overload so I am going to try and take it one step at a time!

Everyone is touting the GFCF diet for Autism but nothing specifically for PDD-NOS but since we are on the spectrum it's worth a try!

As I go through this journey I will try and document what I am going to try and what seems to be helping, if anything!

Some Family Fun

2009-01-01T18:28:00.001-05:00

Send your own ElfYourself eCards

A Family Meeting with CMO, the "Therapist" and the "BA"

2008-12-30T20:04:00.005-05:00

Oh boy, oh boy! Tomorrow morning at 10:00 am I have my favorite people coming to have a family team meeting to talk about the lack of help we have been receiving. I look forward to having my daughter join us, she works at a school for special needs adults and hopefully my very vocal sister will also grace us with her presence. It should get rather interesting when the "Therapist" tells us finally what his game plan is to help Timmy. So far he hasn't shared it with anyone, not me, not Timmy and not the "BA" who has a degree in English but has never worked with a child on the Autism spectrum or had any formal guidance or training working with children in general. So this young man is a very nice guy however is he the right person to help Timmy? I don't think so, here we have this nice young man who's heart is in the right place trying to help a child when he has no clue where to even begin.

We have the "Therapist" who isn't helping us and the Behaviral Assistant who isn't helping us coming over to talk about how they are going to help us. Oh and I forgot we have the Family Support Organization person maybe coming too, this is the person who is suppose to be helping provide me with emotional support and guidance through the system, this is the person who calls maybe every 2 months when she remembers us and says "I didn't know Timmy was in the hospital", well lady if you had been doing your job or returned phone calls maybe you would have known. Then when she does call she wants me to give her a 2 hour history on what's been going on, nope not going to do it anymore.

We also have my Child Management Organization Person coming, this is a great young lady who honestly cares about us. She has been supportive and present and keeps trying to get us the help we need. Sad as it is her hands are tied, everything she does has to be approved by "higher" ups and that can add up to a few days to more than a week of delays. I do feel lucky to have her as our worker, I know she cares about Timmy and will always do everything she can to fight for him.

Ok so I have a bit of the glass is half empty going on right now. We are about 8 weeks post hospital now and have basically been on our own. The hospital recommended intensive outpatient therapy for Timmy or 20 Hours of a BA and 5 Hours of a Therapist. The local county agency has granted us 3-4 hours of Therapy and 10 hours of BA. They have contracted this to another agency who is suppose to be doing these services for us. We have yet to even receive that weekly and the 10 BA hours are basically a waste of time. I am training the BA which is a huge mistake since I need help learning how to deal with my special guy, DOH! Oh and as far as intensive outpatient well we have been on a waiting list for the only one in the area for 5 months now, I am told we are still at the top of the list but no openings yet. Yes, I call to the point of where they may put us at the bottom of the list soon!

I don't know, I suppose coming home from the hospital I had unrealistic expectations. I really thought that we would at least get some help and the help would come from people with experience dealing with PDD-NOS in children. Silly Silly me!

I didn't invite the school social worker who is trying to get me to take Timmy out of his current school in the middle of the day to go see more schools that she feels are better for him. Ok let's not forget this child has anxiety issues, I have not looked at the schools myself yet and we have both missed a boatload of school and work with the hospital stays. I even got a nice letter from her stating that it is "normal" to go and see these schools with the child so they can interview us. Ok fine interview us but not until I have seen the place first and I feel there is a chance it may be appropriate for him, then and only then will I pull him out of school to go see another school and start the long process of explaining why he "MAY" be going to another school. Ok, I am digressing and need to get back to the meeting in the morning.

Why can't I be rich like Jenny McCarthy and hire all the help we need to make Timmy as successful as possible? I mean seriously, it's a known fact that the early interventions with Autism have the best outcomes, so why can't we get what we need, where is it? Should we wait until he is a teenager and self medicating because he never was taught the tools he needs? Or how about when he drops out of school or gets violently angry with someone and ends up in jail? Will he get help then or will it be too late?

I really just want to get us the help we should be getting, I don't care if the "Therapist" thinks he is spoiled, but I do care that the BA told Timmy he is a "spoiled brat" and I do care that the "Therapist" call him that also. Timmy has a way of pushing people to places they have never gone before. I get that because he does it to me all the time however it is unacceptable to have his BA or Therapist go there. So tomorrow I will sit with the strong women in my life beside me and demand these people do what they are being paid to do, Help me Help Timmy!

Oh and can someone please come help me fill out all this paperwork so I can get him help from the Department of Disability and Social Security?

A happy moment!

Christmas Eve for a Jewish Girl

2008-12-24T21:14:00.004-05:00

Well it's Christmas Eve for the Jewish girl, it's weird because I don't know what to do with myself. My family is busy with their in-law families celebrating Christmas and I am home with my precious sleeping Grandson. He is only part Jewish so I am doing Hanukah Harry and Santa Claus for him. He gets it all! So tonight we watched Santa Claus 3 and put out cookies and milk for Santa and he is actually sleeping in his own bed right now and I am downstairs alone (HUGE for us). So I think I did it right, I put powder on the bottom of my boots and stomped all around the house near the tree (Fake snow) and I drank most of the milk, took a big bite out of the cookies we left for Santa.

So here I sit alone, it's weird lately. I am so tired and down in the dumps, is it the holiday season? I think it's a bunch of things all wrapped up into everything and some days it's just more overwhelming that others. I tend to like Thanksgiving much better than Xmas or Hanukah, maybe because for me the focus is on the positive, all the things I have to be thankful for. Meanwhile Xmas and Hanukah for me mean too much shopping and spending money on things we don't really need and too much time isolated from others. It's weird tomorrow we are driving down to my brothers and I will be there for the day with his family and my sister and her husband but I don't really want to go. I don't want to sit in traffic for 2 hours or more, I don't want to pretend I am happy, I just want to hibernate (as my sister says). Yes I hibernate when I am feeling stressed out.

I guess I am frustrated with everything that is Timmy right now, I have done some research and found that the medication that helps him comes in a melt in your mouth form and that is not suppose to have the weight gain side effects of the pill version. So I call his dr and tell him what's been going on and ask for his suggestions, he doesn't even suggest this version of the medication until I ask him about it and then he says "that's a great idea". Ok so why do I have to be the one to find this option? I mean I pay these people a ton of money to help us and I have to still do all the legwork and research. So the dr calls 3 pharmacies and not one of them have it. He does order it for me and we will be able to get it Friday afternoon. Meanwhile I put him back on the pill version and he is not bouncing off the walls, not manic but OMG he is eating and eating and it's just scary to watch. I know what's healthy but nothing is healthy when you don't stop for 3 hours. He is never full on this med. I think I will just give it to him before bedtime in the evening for now until I get this new version and hope it helps like it did tonight. He is sleeping!! Did I say he is sleeping and it's only 9:30.

Anyway I hope you have a wonderful holiday, whatever one it is you celebrate but for this jewish girl I will be much happier when it is over,,,,

Happy Holidays to all,,,

2008-12-24T21:09:00.002-05:00

I just wanted to wish all of you wonderful, strong women out there a Happy Holiday. Your comments, your blogs, your words of wisdom are enriching my life. Thank you all for being who you are and for being around when I need an ear or a pick me up or a shoulder....

The right medication to help my boy,,,

2008-12-23T08:29:00.002-05:00

We have been through multiple hospitalizations, medications, doctors, psychologists, neurologists, geneticists, homeopaths and therapists the last few years. During our quest to find something that will help Timmy with his day to day struggle of anxiety, mood swings and hyperactivity I think we have tried every medication known to man, well at least the ones I agreed to try. His last hospitalization one of his medications was changed and due to that change he seemed to be doing way better. The problem is that this particular medication causes the stomach to feel as if it is never full. He actually gained 15 lbs in a 6 week period. There are other issues with this medication, it seems to bring out diabetes and other sugar related issues. Due to these side effects I spoke with the doctor and we decided to try something else that has much fewer side effects. Well all of the sudden I am seeing the aggressive miserable child again. So the dilemma is do I allow the side effects and put him back on the medication that was helping him or do we again go through and try to find something else that does help him? The other issue is I don't think there are many medications left to try. Oh and for you non-medicators, Timmy can't make it without meds, he is miserable, aggressive and bouncing off the walls. I have tried the whole homeopathic route and that didn't work either.

The weekend is over,,,

2008-12-22T09:42:00.003-05:00

It sucks to be me right now. I would rather be at work than home with Timmy. He is constantly BORED, in fact if I hear him tell me he "I'm bored" one more time I may commit myself. This weekend he had a Holiday Party for most of the day on Saturday. He was home at 3 pm and it began. It was horrible trying to get him to bed and I spent 2 hours going back and forth with him. He wakes me up at 5 am Sunday and then it starts all over again. We have another holiday party to attend from 9-12. We leave home at 8:30 and are the first ones at the party and the last ones to leave. We get home around 12:15 and it starts again, Mom, "I'm bored". When does Hanukah start? I can't wait 5 hours, I'm bored. I do everything I can to entertain him, we watched a PPV movie, we colored, we played with boxes, we colored more during all of this he is saying "I'm bored" Meanwhile it's nasty out, cold raining, sleeting, just crap weather. Then finally it's 5pm and we can go to Aunt Debie's for Hanukah, we light our little menorah, say our prayers and head over to Aunt Deb's.

We give him his one Hanukah gift for the first night, eat some dinner (thanks sis) and then I head home with him since it's a school night. All the way home he is freaking out over his new MP3 player (which I preloaded with his favorite songs and charged). He is having a total meltdown in the car as I drive home, whining, crying, yelling the whole 1.3 miles home. We get in the house and I try to sit with him and show him how to work the new player. He continues to flip out on me, yelling, whining crying, etc. Finally it's 6:30 and time for nighttime meds. I get him to take them and he continues to whine, yell and cry for the next hour meanwhile telling me "I'm bored" . I am trying to get his lunch ready for school and get uniform ready and fold clothes and clean up the house while I am being yelled at by a 7 year old.

Finally it's bedtime, we are struggling to get him to sleep in his own bed so I lay down with him and try rubbing his back and let him watch TV quietly. He can't sit still, he's hot, he's cold, he can't hear the TV, he needs his stuffed animal, he wants a different blanket, etc etc for the next hour. I finally snap, tell him I am done and get up and walk out of the room. He follows me downstairs telling me he is "bored". I tell him to get in his room and go to sleep or there will be one less gift from Santa and Hanukah Harry who is seeing exactly what he is doing, does he care? Hell no! This continues to go on for the next hour and he finally passes out on the couch. I am so wound up, pissed off and frustrated now that I can't fall asleep!.

So it's midnight, I finally go upstairs and go to bed and left him on the couch. Three am he starts again, screaming at me "You left me alone". I tell him you best get to sleep now and he does finally. I wake up this morning and he is in bed with me. OMG.

I have no space, I have no privacy, I am mentally exhausted by this child. He is mentally abusing me and all of the people that are suppose to be providing us with respite and therapy can't seem to work the hours we have allocated so as usual it's all on me and I am losing my mind.

Uggggggggggh, ok I feel better now, tired but better. I am not looking forward to the next 2 weeks. I look at it as four days each week with him home with me screaming "I'm bored" and me running him around like a freaking lunatic trying to keep him entertained. I really feel like I am too old for this, god help me.

Thursday and a good question

2008-12-18T08:22:00.005-05:00

One of my wonderful commentors, Mama Kat said... What exactly IS PDD-NOS? Well I am still learning myself. I found this wonderful blog to help explain it "Understanding Autism"

I can't say that I totally get it yet. For me it's just another diagnosis which means they really don't know what exactly is wrong and this is a best guess again. There is an interesting online test you can do for your child to see if they meet the PDD-NOS criteria, you can find it here .

It's all confusing and frustrating, I have this little innocent grandchild who was exposed to a multitude of drugs inutero, it took the hospital 59 days of PICU to detox all of it out of his system. I don't know if them not allowing him to be held during this process of detox caused it or if it's due to all the drugs he was exposed to while inutero or if it's because it's just how God created him.

Somedays I have a ton of anger towards his parent's, my son and Timmy's birth mom, some days I am just so sad for all of them. Timmy is getting to the age where he is asking more and more about why his parents aren't around and why he doesn't live with his sister and it's getting harder and harder to satisfy him with the easy answers like "Your parents couldn't take care of you and they knew I could so since they love you they had you live with me". Now when I say that standard line to him he says "why couldn't they take care of me? am I bad? don't the love me? why can't I live with my sister when my friends all live with their sisters?

Ok this is too serious today and I need to end it with something else.

Last night I picked Timmy up from his second day of after school care. He tells me "Mom, I met a girl and she is so HOT", so me being me says to him"Timmy, it's not appropriate to call a little girl Hot, you can say she is beautiful or cute" Timmy responds to me with "Mom, how come my penis grows when I like a girl" OMG, he is 7 years old, I almost wrecked the car from this one. So I avoided a direct answer and will defer to one of his uncles for this answer!! Any suggestions on the penis growing answer will be greatly appreciated!!

Wednesday - Another work week 1/2 gone

2008-12-17T07:26:00.003-05:00

Well we made it to Wednesday. I have to say I am really concerned about how Timmy is going to do at the new daycare today. He gets out of school early and will be there at 1:15. I have the "therapist" lined up to go and spend 1-1/2 hours with him there to help with the transition. The daycare folks have been wonderful well with the exception of the "nurse". This woman is a real PITA and feels the need to interfere with everything I set up with the daycare owners. The funniest thing was watching her when the owners were around. She turned into this other person who was sweet and kind vs the one who was giving me the inquisition and telling me how I should be doing everything. Anyway I just need to let it go and realize some people are on a power trip and in reality she has no power over me or Timmy or our situation, she is just a speed bump we can drive right over.

Tonight we have the BA coming over. I am hopeful he can get Timmy to start sleeping in his own room. I really feel like I have no time for unwinding. My house is still a wreck although I did manage to place an order for groceries online and had them delivered last night. This morning I even managed to put something in the crock pot for dinner. Let's hope the 10 hour cook time doesn't ruin it! I need one of those crock pots with a delayed start! I leave home at 6:45 am and done get home until around 5:45 pm, oops that's an 11 hour cook time. Maybe my sweet sister can go by the house and turn it off for me around 4pm. Note to self: Call sister!

Ok so I got almost all of my todo's done from Monday but I still have a ton of things left and even more to do now, here we go,,,,,

1. Start wrapping presents - I have to do this but with Timmy attached to me when we are home it's not easy
2. Clean my house - I hate clutter everywhere, I come home and feel anxious because it's a mess and yet I don't have the energy to get the cleaning done, why is that?
3. Call my sister - I really don't want to forget this one, my dinner will be awful after 11 hours in the crock pot.
4. Do Laundry - Timmy gained 15 lbs while on this new medication(I am titrating him off it now) and all of his school uniform pants are really tight. I bought 12H and then 14H and they are still tight. This is a 7 year old child! Hopefully getting this medication out of his system will help! Ok I can go on and on about this subject. He gets home and will do nothing but eat one thing after another. It seems this medication the doctor in the hospital put him on causes the stomach to block the histamines and he never feels full!. I can't wait to get him off this stuff.
5. Schedule a physical for him since the new daycare needs a physical form filled out and the last physical he had was in the hospital. They will not fill out the form for me. I have 2 weeks to get it done but since it's the holidays well who knows when it will happen.
6. Wrap presents, yes again because I don't even know what I bought and if I have to go shopping again well time is about out.

Today my brain is mush with all of this and I can't even think of what I need to do,,,,,, help me!!

Timmy with his sister Emily making pizza, Emily lives in Connecticut with their maternal Aunt and Uncle. We will save that for another day

It's Monday and I need space and sleep

2008-12-15T07:48:00.004-05:00

Wow, it's Monday and I somehow made it through another week. I am soooooo freaking tired. My sweet little boy has decided to wake up at 2:30 am every day since Thursday night and about every 15 minutes tells me he wants something else. He wants TV. He wants food, he has to ask me a question, etc etc. It's bad enough he won't sleep in his own room but even the chaise next to my bed is too close! I can't brush my teeth without him watching let alone go to the bathroom without him banging on the door at least 10 times or even walking right in (yes I know lock the door). I am so whooped right now. I notice the less sleep I get the harder he is for me to deal calmly with. So no sleep for me means lots of yelling and frustration for both of us. So it's Monday morning, I am at work and I have a zillion things to do and all I really want to do is sleep!

Ok the list of things to do:

1. Get milk - there has been no milk in the house for 3 days
2. Get Gas - no choice here cuz I will run out of it soon
3. Wrap Presents - well that would be great if I had 5 minutes without him to even start it
4. Get groceries - running out of fridge food and lunch snacks and juice now, ordered online at Peadpod last night but no delivery until Tuesday night
5. Get the forms to the bus company for afterschool drop off
6. Get the forms to the new daycare and pay them
7. Take Timmy for another physical at his new pediatrician for daycare
8. Call "The Therapist" and "the BA" and "the CMO worker" to be at the daycare as much as possible to shadow him when he starts so that I am setting him up to succeed
9. Pray that he doesn't cuss anyone out at the new daycare because he is overwhelmed
10. Call the bus company and find out what day they will start transporting him
11. Start the DDD paperwork
12. Start the SS paperwork again
13. Go to the drugstore and get his new medication since his old one put 15 lbs on him in 6 weeks.
14. Clean my house (It's a mess)
15. Do the laundry
16. Take a shower and get my hair washed, dried and flat ironed.
17. Work all day at work so I keep my job

I know there is more but I am too tired think of them all .

Oh btw the "therapist" was gentler this time and Timmy responded much better to him. Hopefully he will help Timmy and remember he is 7 years old and not the 10-15 year old child he is used to working with.

Wednesday - The "Therapist" returns

2008-12-10T07:21:00.003-05:00

So it's early Wednesday morning, I am at work and already dreading the visit from the"Therapist". That in itself says a lot! I have made a commitment to give this person one more chance but honestly if they chemistry is not there with him then they will need to find us someone we can work with. I don't want to have to be stressed every Wednesday because this person is coming over. The big issue is that when I tell my local agency I want a new Therapist we could go for 2-3 weeks without any services in home. It's so frustrating but I need to be positive and hope for the best. I just have a hard time being ok with a man who feels my child should be in a group home and feels he is spoiled and not disabled. Yes every child is spoiled in their own way and yes I am his grandmom so that makes it harder to draw the line but I have spent the last six months working to put boundaries and structure in place for him even though it's really really hard for me. Yes I have the middle child syndrome!

More to come after the visit,, wish us luck this afternoon.

Feeling the need to rant and maybe rave too!

2008-12-02T09:29:00.002-05:00

I am really sick and tired hearing about all these wealthy people who have "CURED" their autistic child. I mean seriously, this is not a "curable" disability. Ok so they can afford full time Behavioral Assistants and Nanny's and Therapists and anything else they can buy to help their child. What about the rest of us who struggle every day to figure out how to work full time and get home before our special children get off the bus from school because we can't afford to have full time help. There are no afterschool programs for these special children within 50 miles and I live in a Central NJ, not exactly in the middle of no where.

So am I lucky to live in New Jersey? Here there are certain services that the state will provide to a special needs child here. Do you have any clue what you have to go through to get these services? Then there is the DDD, another agency who is suppose to help our special children, you not only have to fill out a book to start the process of intake but then you have to gather documentation from every doctor, school, test, person your child has every had contact with while at the same time proving they are a real person with birth certificates, passports and social security cards. Yes all this while trying to raise a special needs child alone, work full time and be there when the bus arrives from school with a smile on your face prepared to deal with a child who asks over and over again the same questions?

My Not Otherwise Specified child is enthralled with numbers, time, age, etc. He spends his day counting and trying to figure out how this number relates to that number. Most of the time he already knows the answer to his questions so why does he keep asking them over and over again? Why can't I be a "rich" person who can afford to have the full time help this child needs so he can also be "cured".

IDEELI - Balenciaga Give Away Link

2008-12-01T15:49:00.001-05:00

Great Give Aways,,,, woohoo

IDEELI - Balenciaga Give Away Today

Day 15 - A long weekend and a crappy therapist

2008-12-01T09:27:00.007-05:00

Wow, Happy Thanksgiving to all. I am thankful for so much but most of all that my little guy is able to be home with me and doing better. Every day is a challenge but with the love and help of my family and friends I am getting through it.

Now on to the crappy "therapist" that showed up at our house on Wednesday. This guy walks in with his coffee in a container and asks me to heat it for him. No problem, heat the coffee and give it to him. We sit down and then in comes Timmy off the bus. He takes one look at this guy and regresses 4 years. He goes into a meltdown for about an hour while this guy tells me this is all because he is spoiled. It has nothing at all to do with him being on the Autism Spectrum and when my little guy finally is calm enough to sit with us one of the first things he says to him is "You're spoiled, aren't you?"

This is a person who is suppose to be there providing therapy to us as a family and helping to give Timmy the tools he needs to deal with his disability. Here is what I learned while the "therapist" was at my home:

1) Timmy is spoiled

2) Timmy doesn't need the amount of therapy the hospital determined he needed after a six week stay.

3) The "therapist" doesn't need to do any therapy with us or provide any help or suggestions on what I can do to make our lives better for the upcoming long weekend

4) The "therapist" has no clue when there will be a behavioral analyst assigned to us because 10 hours to way too many hours and they aren't babysitters. This in spite of the fact that the hospital recommended 20-25 hours a week.

5) The "therapist" will not be back to provide "Therapy" for us until 12/10/2008 which will be for 1-1/2 hours not the 4 hours weekly recommended by the hospital upon Timmy's discharge

6) The "therapist" will be Timmy's best friend in 3 months even though Timmy immediately melted down the minute he saw him in the house and didn't connect with him on any level

7) The "therapist" is more interested in telling me how wonderful he is than offering any type of therapy to us.

8) The "therapist" did not read anything about Timmy's history before he walked in the door.

9) The "therapist" wanted to know why I didn't put him in a group home instead of bringing him home

Ok breathe deep, smile and make the call to make sure this is not the "THERAPIST" we will be dealing with in the future. It's all about being the advocate and not letting the system run us over.

New favorite website Ideeli

To shop or not to shop,,,,,,,,

2008-11-26T11:03:00.003-05:00

My favorite sister and I, yes she my only sister too, just had a discussion about Black Friday and if we should go out at 4am Friday morning to shop. Well it wasn't really a tough decision, I mean who can pass up $10.00 free dollars for every $50.00 we spend at Kohl's. They open at 4am so that makes it even more of a no-brainer since it's before everyone else is open, woohoo!!. Last year we even managed to snag shopping carts in Kohl's, ok so I had to follow people to the register and snag them but hey we got them didn't we?

Does anyone know of any more really great shopping deals? Macy's faked me out with their $10.00 for $25.00 deal, I thought it was like Kohl's, if you spent 25 you got 10 to spend later but that wasn't the case, it was just 10 off of one 25.00 item.

Looking at http://www.theblackfriday.com/

Day 11 - A really good day and a really bad night!

2008-11-25T09:49:00.002-05:00

So we had a great day!! Major progress at school by asking for a "self time out". School of course didn't give him major bonus points for doing it but when he got home I sure did! My wonderful sister and nephew got him off the bus yesterday so I could actually work a full day at the office. I got to their home to pick him up and he was happy and proud of his day. We got home, I made dinner while he jumped in the shower and cleaned his room all by himself! Dinner was eaten, reward system sheet done, dinner cleaned up, all smooth and happy. Then it's bedtime, he asks to go to bed (he will not sleep in his own room or be upstairs alone) so off we trudge to my bedroom. I was smart enough to put a lounger in my room which is where he has been sleeping. I tuck him in and give him his hugs and kisses and he eventually falls asleep. I get up, take a shower, clean up around the house and then it begins,,,,,,,,,

I hear the THUMP THUMP THUMP upstairs, he starts screaming for me, nothing he is saying is making any sense at all, he can not be consoled. He demands I turn off my television and go to sleep, then he continues to scream at the top of his lungs for the next 15 minutes. I am trying to talk to him, to calm him, to figure out what is wrong. I finally give up, crawl into bed and allow him to just scream for another 15 minutes while I pretend to be sleeping. And then just like it started it stops and he is snoring away. We did this 5 times throughout the night. In the morning he says he doesn't remember any of it,,,,,,, wow I sure do!!

This will be a point of discussion with the Dr tonight at our appointment. It as if we are back to Night Terrors of the 2 year old. Great day, bad night, hey it could be worse, bad day, bad night. Count the blessings of a great day!!

Day 10 - a long weekend and learning to say NO

2008-11-24T08:17:00.003-05:00

Well we made it through our first weekend home after 6 weeks in the hospital. We are desperately trying not to regress to our old behaviors (at least I am). It's so much easier to say Yes to everything than it is to say No. Why is that? My persistant child is pushing every 10 seconds to get his own way and I have to stick to my guns and not give in. He seems to be much more stubborn than I am. I am starting to hate the word No, or at least hate the constant of trying to redirect him to another place. He always comes right back to what he wants. It's a learning process for us. I guess he's figured out that if he consistently drives me crazy with something he wants in the past I have given in just to stop the harrassment and now I am not giving in but he hasn't figured that part out yet. I have to untrain the peace keeper in me to just say no. It's not helping in the long run when I say yes even if it is an instant gratification thing for us.

Thought for the day "Just say No and stick to it"

A baby step forward in a world not otherwise specified

2008-11-21T10:45:00.002-05:00

My favorite local mental health agency just called. They have found him a Therapist and a Behavioral assistant. They are going to give us 3 hours of a Therapist and 10 hours of a BA. Now this is not even close to the recommended hours on his hospital discharge but hey it sure beats what we have now, nothing! I can hope to keep him from regressing and hopefully if they also recommend him needing more than what they are approved for currently it will happen. I am not sure when this will start but today isn't soon enough in my eyes. Next week is Thanksgiving which means it's me and my boy from Wednesday 1:00 pm until Monday am without help unless they get these services in place by then. I guess now is the time to plan how we are going to get through this time and figure out how to stay busy in a positive way.

I have to say the hardest part for me in all of this is having a set schedule and sticking to it exactly. This is what I am told he must have this but it sure is the most difficult thing for me. I mean it's even down to when we eat, shower, watch TV, play a game, etc etc....

Any ideas would be welcome,, so far we have Turkey Day with Auntie, A day with our friends, swimming at the YMCA

I find myself pouring out words, it's like someone turned on a faucet. It's been so insane for so long and I am trying to find a way to make it sane again. Is that even possible? Am I looking for something that is never going to happen? What is sane anyway? Is that a day that goes by without a major meltdown with myself or my GS? Why is it that when he is going to be gone during waking hours I just want to sleep instead of doing something productive, like the damn laundry I hate putting away?

Oh and Happy Birthday Daddy, I miss you every day.

Day 6 - Home from the Hospital

2008-11-21T08:40:00.000-05:00

After reading tons of blogs I thought it might be a good way to document our struggle to find help. I am a single paternal grandparent raising my 7-1/2 yr old grandson who is now diagnosed with PDD-NOS. Where to begin? I could start with the 10 doctors, 10 psychologist, multiple medications and wrong diagnosis for 3 years. I could start with the struggle to find someone who doesn't want to medicate him into a coma. But I think I will just start with where we are today.

Today we woke up in a decent mood, had breakfast and got on the bus to go to school. Ah school, well the township we live in doesn't want him in their school so they have him at an out of district placement 45 minutes from home. He is picked up between 6:30 and 6:45 in the morning each school day. Now that we know his true diagnosis is this the right school for him? I know he is of average intelligence per his psychological testing, I also know he can't read yet. Is this because they aren't teaching him or is this because he is part of the autism spectrum? We had a meeting on Wednesday and I was told he is at the beginning level of 1st grade. That's what they told me last year too. I guess he didn't learn anything last year, of course that was due to his behavioral issues (per the teacher). Let's not forget this is a school for children with behavioral challenges, they are suppose to have in place programs to help deal with his challenges and still educate him. The latest thing out of our meeting Wednesday is they will send home homework for us to do every afternoon and the district will do an education assessment, which they have up to 60 days to complete. So we are in limbo at school, he isn't learning and we have to sit and wait for another assessment. Meanwhile back at the ranch the new school district social worker assigned to my GS calls me on Thursday and says "You have to come in right away and do a social assessment with me about GS" oh and if you don't do it right away it is going to delay the whole assessment process. This person has who has met my GS once is holding his education in her hands and on hold. She is sending his information to schools I do not want him to attend and ignoring my request for him to be mainstreamed. I think I have quoted "Wright's Law" to her 15 times since she became his social worker. Least restrictive environment and she is pushing for a very restrictive hospital school over 1 hour away from our home since she has a high school student who went there.

Meanwhile at home we are trying to implement the Applied Behavioral Analysis program they had at the hospital he was in for 6 weeks. The local agency who is suppose to put a therapist, BA and a mentor in place for us at home has failed to do so yet. The hospital has recommended he get 20-25 hours weekly with a BA, 4 hours with a therapist and 10 hours with a mentor along with respite for me. I have to come in to work early and leave early to try and keep my hours and keep my job. Thank god for my sister who is helping me with him after school 2 days a week right now. There is no after-school program for him available so when he isn't in school I have to be home. I am not a therapist and no matter how hard I try I really need help to make it with him at home. GS will not sleep in his own room, he will not go upstairs and go to bed unless I go with him and every day my housework gets more behind. I am frustrated beyond belief with the broken system. My GS is starting to regress to old behaviors and the local agency is telling me that getting these services in place "take time". Yes more of the old "take time". It's so hard not to get depressed and angry and have feelings of isolation. I have to apply to SSI for him, I have to apply for the DDD for him, these agencies need documentation beyond belief. When do I have time to fill out all of these papers? Maybe I can do it during my drive back and forth to work, or maybe I can do it when he falls asleep at night and I need to get laundry done. Oh and let's talk about the 100 calls I need to make to keep pushing for help for us during the day. Yes there is another agency that is suppose to "Support the family". They have been basically non-existent to us, anything they promise they don't follow through with, they don't come to appointments, they constantly reschedule every time they are suppose to visit us. Then we don't hear a word from them for weeks and they call and say "hey we are here to help, what can we do?" My response is nothing since that's all I can expect from them.

The local county mental health agency wanted to put him in a "group home" just so they wouldn't have to deal with us. This is the same agency who is suppose to advocate to keep a child at home. He is 7 years old, how can it be better for him to be away from his family after being abandoned by his own parents? Oh and let's also not forget New Jersey has the highest rate of autism in the country. I think I could write a book about what's happened to us the last 3 years....