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October 28, 2009

If my job is the rock, does that mean child care is the hard place?


I frequently get calls from mother's who find themselves between a rock and a hard place.  Here is the scenario; you have a new job after being unemployed or underemployed and your previously solid child care arrangement has just come undone the day before your new job starts.  Or, your child care center has just informed you that they can no longer accommodate your child because (insert excuse here).  What makes these situations extremely challenging is that your child is diagnosed with autism and you know that finding a new arrangement will take an act of God.  What do you do?
Below, I have compiled a few possible suggestions:
1. Consider a home health aide
Home health aides are typically nurses that you can utilize through a home health aide agency.  In order to get this service you will need your doctor to write a letter of medical necessity for your child and submit this to your insurance agency.  Different rules may apply in other parts of the country, but a good place to start is How to Choose a Homecare Provider and Pediatric Care.  This a Pennsylvania site, but the info is general and informative.
2. Add recreation and social skills programs to your childs IEP
Education is not the only purpose of your child's Individual Education Program (IEP).  As your children get older they may age out of a traditional daycare setting yet still not be able to stay home by themselves.  In this case if you don't have someone to look after them you could advocate for an after school program or a social skills program.  Now I am not saying this is just as easy as asking for it, (notice I wrote "advocate"). In fact it may not be easy at all, but if your options are few, you can't avoid at least asking.  Some schools are hip to the needs of children with autism and offer their own programs, if you happen to know one, please put it on blast here so we can all move to that particular state and school district!
3.  Quit your job and go on public assistance
If you don't work, you don't have to pay nor find child care. There are other issues which make this option unappealing, but hey at least you know your child is being taken care of properly! I jest, but really what is a parent to do when all other options have been exhausted?

Any other suggestions are welcome.  Depending on where you live you may have other options like offered by non profits, or state agencies to answer the question of what to do when you have no one left to care for your child.

This is why my mother and I founded- Autism Child Care Connection Inc.  We are preparing to remedy the situation (at least in our area) by creating a safe place for children with autism.  We are making it inclusive, because life is diverse, yet specialized because we know autism and the challenges that go along with it. I know first hand what its like to have your child kicked out of daycare, on  your second week of a job that you were hoping would pull you and your family to a better standard of living.  I have had my own relatives ask me to take my child somewhere else.  I have had to leave jobs for lack of child care.  I also know that I am not alone.  At least once a week I get a phone call from a parent in the same situation I was in.  For the longest time I thought that someone else, some agency, foundation , group would come along eventually and solve the problem.  But no one has.  They have attempted to assuage it with lesser programs, respite, and special parents nights, but that does nothing for a single mother who needs either full day care or consistent after school care.

I am looking for solutions, if you have some things that have worked for your family or in your community please share in the comments.

October 18, 2009

Regression Rewind, Forgetting Abilities and other Autism Oddities

Yesterday I watched the last 1/2 hour of Molly on television.  For those of you unfamiliar with this movie; it stars Elisabeth Shue as a twenty-something girl with autism. Her brother, Aaron Eckhart takes her from an institution so she can receive an experimental surgery to cure her autism.

I'm glad I only watched the last 1/2 hour because in five minutes I was already tearing up. I would have been a total wreck had I watched the whole thing.
SIDEBAR***Am I the only parent who cries at all things autistic?  I find that sometimes I can not even watch a simple news report about autism with out turning on the waterworks.***

Its an older movie (1999) so I'm going to give away the ending.  Think Awakenings - She is cured, falls in love, rekindles a relationship with her brother and is poised to start living life anew, when alas the surgery doesn't take and she returns to her autistic self.  My descriptions really does not give the movie justice, but forgive me I only saw the last 30 minutes.

Regression sucks.  Whether its an experimental surgery or in my children's case a year of school or summer vacation, when regression rears its ugly head it is completely unwelcome.  I consider it one of the unpleasant dips on the autism roller coaster.  One of my children is currently going through a regression.  I have no idea why and I am clueless as to what to do. I liken it to when you can't find your keys in your purse, you just dump everything out in order to find them.  "Is it because we've been lapse on the diet?"  "Is it the new school?"  "Maybe someone's making fun of her."  "Should I try a new supplement?" "Too much TV?" Unfortunately regression is common in autism and this is not the first time it has happened to this child.   Sometimes they come out of it and make a progression and sometimes not.  I hope its the former in her case, that maybe this is just growing pains or seasonal.

October 12, 2009

You Aut to Know! takes on the metaphysical side of Autism with upcoming guests; medium, Karen L. Garvey and intuitive Terri Jay










Forget sign language, PEC's and voice output devices; when it comes to communication, Nicole's upcoming guest use a better tool...the mind. Call in live 10/18 and 10/25 6PM EST - (347) 996-3422.


One of the hallmarks of Autism is a delay in language or no language at all. Parents continually seek hours of speech therapy, alternative communications systems and devices to give their child a voice. Some individuals with autism, never acquire the ability to speak.


On 10/18, You Aut to Know! host Nicole Flamer will interview, noted medium Karen L. Garvey of the Answer's Unlimited about how she has helped families cope and gain a global understanding of autism. After 9-11, Karen L. Garvey discovered she had a surprising “mediumship” ability. Since then, Karen has guided thousands in understanding their journey and becoming happier. Karen draws an unusual number of people who have a connection with autism (as a parent, caregiver, doctor, etc.) and as such has opened up a beneficial global understanding of autism by helping those connected to the condition through seminars, articles, and one-on-one sessions.

Understanding is beneficial, but what if you could also know what your loved one on the autism spectrum was thinking, by "other means"? Intuitive Messenger, Terri Jay is ready to facilitate that desire. On 10/25, Terri Jay will explain her unique gift of hearing non verbal communication with the You Aut to Know audience. For over 35 years Terri worked with children with disabilities. Terri eventually realized she could hear non-spoken communication. Terri uses her intuitive gift over the phone for parents of autistic children, those with a loved one in a coma, PVS, Alzheimer's, dementia, etc. Terri says, "I know there are varying degrees of being verbal so I offer this service to those whose children have very limited ability to communicate." In addition, Terri Jay also teaches people how to be more intuitive.

You Aut to Know is proud to bring both of these gifted women to you live at www.blogtalkradio.com/aut_toknow. Call in to talk-(347) 996-3422, or submit your questions through the chat feature.

About You Aut to Know!
You Aut to Know! is an interactive, live talk radio show that features Autism news, views and resources. Every Sunday at 6pm EST, host Nicole Flamer finds informative guest doing phenomenal things for the autism community and their families. Nicole also shares her unique perspective as a writer, advocate and mother of 3 children on the autism spectrum. Check out the companion blog, www.auttoknow.blogspot.com for updates on guest appearances and featured resources.

About BlogTalkRadio
BlogTalkRadio is a free, web-based platform, which allows any user with a phone and a computer to host a live, interactive Internet broadcast. Hosts call into the service by phone, managing callers on the web-based host dashboard. Shows stream live directly from the host’s BlogTalkRadio web page with archives available for all past shows. BlogTalkRadio has been featured on ABC News, The Washington Post, Portfolio, Talkers Magazine, and TheStreet.com. The citizen-broadcasting network can be found at: http://www.blogtalkradio.com

Below is a link to my press release, please share.

October 11, 2009

Episode 10/11 Resources

Great show! Lindsey Nebeker a total delight!  Will be back for part 2.
Opening Music
  

Focus on Foundations


ACT Today - grants from $100 - $5000 to pay for treatments and therapies, and assessments.  Due date approaching October 26, 2009


Autism A-Z

October 5, 2009

New Rates for Autism, now 1 in 100***UPDATE No wait, its 1 in 91?



Wow, two reports with extraordinary instances of children with autism! What are the implications of these numbers on services, research, and awareness?


A national survey of parents showed the prevalence of autism spectrum disorders (ASDs) is
approximately 1 in 91 U.S. children. The study, “The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the United States, 2007,” was published in the
Oct. 5, 2009, issue of Pediatrics. The study drew on data from the 2007 National Survey of Children’s Health, a telephone survey of parents conducted jointly by the Health Resources and Services Administration and the Centers for Disease Control and Prevention.

*ORIGINAL POST*

Two new government studies suggest autism spectrum disorders are becoming more common in children in the USA. However, researchers say, it is not clear how much of the increase is a result of more frequent and earlier diagnoses and how much is a result of a real rise in the conditions.
"The concern here is that buried in these numbers is a true increase," Tom Insel, director of the National Institute of Mental Health, said Friday at a news conference. "We're not sure how big it is."
Insel noted that President Obama wants to increase spending on autism research by the National Institutes of Health by 16% — a bigger bump than in any other area of NIH research.
One of the studies, published today in the journal Pediatrics by researchers at the Health Resources and Services Administration, found that one in every 91 children ages 3 to 17 have such a disorder, as determined by a survey of the parents of 78,000 children. That's an estimated 673,000 children, the authors write. In half the cases, parents report their children's symptoms as "mild."
Prompted by the Pediatrics study, the Centers for Disease Control and Prevention is announcing not-yet published results of a second study. It finds about one in 100 8-year-olds has an autism spectrum disorder, or ASD. In a similar 2007 study, the CDC placed the rate at one in 150. Details of the study are due this year.
The Pediatrics paper discusses several possible explanations for the apparent increase in ASD diagnoses. They include a broader definition of autism disorders and a heightened awareness of them on the part of parents and doctors.
"This is something that further research is going to have to look at," Michael Kogan, lead author of the Pediatricspaper, said in an interview. Kogan is a scientist at the Health Resources and Services Administration's Maternal and Child Health Bureau.


BY THE NUMBERS
A new government survey estimates that more U.S. children than ever have a diagnosed autism spectrum disorder. Overall, the prevalence was 110 out of every 10,000 children ages 3 to 17. But the rate varied by sex and racial or ethnic group: 

Boys: 173 of 10,000

Girls: 43 of 10,000

Hispanic: 103 of 10,000

Non-Hispanic white: 125 of 10,000

Non-Hispanic black: 61 of 10,000

Non-Hispanic multiracial: 71 of 10,000

Non-Hispanic other single race:  66 of 10,000

Source: Pediatrics
Pediatrician Susan Levy, founder and director of the Regional Autism Center at Children's Hospital of Philadelphia, notes that Kogan's study is based only on what parents said about their children, not information from doctors involved in their care.
"For what it is, it's very well done, and I don't mean that critically," she said in an interview. "It is one method of getting a handle of how many people in the country have this disorder. Is it the best method? No, but it is one way of approaching it."
Surprisingly, Kogan's survey found that the parents of nearly 40% of children reported to have been diagnosed with ASD said they no longer had the disorder. Perhaps their doctor labeled them as having ASD so they could get services for developmental delay, Kogan speculated.



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October 4, 2009

You Aut to Know! Resources - 10/4 Episode


Topic; living chaos to chaos, crisis to crisis
Focus on Foundations
Mesa - Angels - www.mesa-angels.com - grants for those in extreme need, not autism specific


Autism A-Z
Echolalia

Music
Opening
Mister Frites - The Boy Who Never Talks

Closing
Jibs - The Flower Song

October 2, 2009

Secretly addicted to crisis, autism edition


I spent most of my middle daughter's kindergarten year embroiled in conflict.  We were having placement issues - they wanted her out of the class while I wanted her in. I was also trying to get my son placed in an approved private school. My husband was in a car totaling accident and while he walked away from the crash with no injuries his income which was dependent on his car was impacted.  I was not working at the time so we were basically relying on the kindness of my parents and social security.  I was sick, it seemed as if I were coming down with a new illness every week, and of course I had no insurance to pay for anything serious.  My life was a mess.  On top of that my children were out of control.

You might ask, what's this has to do with secret addictions and autism? Everything!  The situation I outlined above was almost two years ago and nothing is the same.  My daughter is still in her appropriate placement, my son is in the private school, my husband and I no longer live together but we are still married and trying to reconcile, I work, I am not sick, I have insurance and my kids are still out of control!

What changed?  I did.  Autism gets a bad rap for being responsible for so much, from breaking up marriages to bankruptcy and while I do definitely see the impact of having three children on the spectrum makes, the rumors of its magnitude have been greatly exaggerated.

This brings me to the secret addiction and the turning point for me.  The school district and I took a year to finally agree on what was going to happen to my daughter. Luckily they agreed with me. After the last IEP regarding my daughters placement had ended, I found myself sitting at home with a strange longing, dare I say a mourning for the year long struggle of events I had just exited from.  Weird?  I actually started taking stock of the List, (you know, the list of things you have to schedule, manage or search for your children) and found that it was filled with mundane things like doctor's appointments and recreation activities.  I was a little sad to see that "ream out my son's teacher" was not on it.  What was I going to do since I no longer needed to wait earnestly for the next episode of Nicole Against the World?  I became melancholy, depressed even. It took about a week for me to see that I was addicted to DRAMA, CHAOS, and most of all CRISIS.  Nothing felt quite as good as that fight or flight experience, that adrenaline rush from spending nights going through data, old IEP's and letters and emails from my kids teacher trying to find a mistake.  I realized that not only was this not a new phenomena for me, it had actually started when my son was first diagnosed.  That's when I started to feed off the drama that was happening to my life.  With out it, I felt empty and worthless.

Are YOU on a crisis cycle?  You may say that, "these things just happen, its not my fault my kids are autistic and they need advocacy and care."  And you would be right, it isn't your fault.  Unfortunately I find the service delivery system a system of extremes.  You are always put in the position of having to prove your disability(or your child's disability) while proving your right to exist in the community.  In other words we as parents are continually backed into a corner.  What's left to do, but fight or flight?  Obviously we can't leave - at least most of us can't.  We could fall down and play dead, but what good would that be to our children?  So we fight.  Timidly at first, but after a few kills we puff up with arrogance.  We saunter into that meeting room and sit at the head of the table because it has our name on it of course.  We banter with the best of them, throwing around "least restrictive environment" and FAPE as if we made up the terms.  And it feels good.  Really good.   Finally they are paying attention to me, all eyes at the table are waiting for my input.  You've fought the law and you won.  Ahhh, but now your addicted.  Its not easy to go from being star of the IEP meeting to regular old parent and some people don't.  That's when it starts to be your fault.  When you start investigating every little note and comment an when nothing is satisfactory to you.  That's when you know that there is a problem and it's not "the man" its you and your addiction to adrenaline.

Listen this Sunday at 6pm to You Aut to Know radio show, as I continue the discussion on autism, parenting and chaos crisis adrenaline addiction and give suggestions on how to go cold turkey.
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