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Autism is Financially Devastating Posted By: shannonj
Posted On: 03/02/2008
Science Daily just published news of a study indicating that raising a child with autism can be financially devastating to families. The study said:

"Some families quoted in the study reported skipping meals to be able to afford therapy for their children. Others talked about robbing their future by depleting savings, emptying their 401K plans, selling stocks and even filing for bankruptcy. More costs are added to some families who need counseling and medication for themselves in order to cope with the stress of raising a child with autism, further straining the family budget."

What are some of the other costs of raising a child with autism that you have experienced? The added expense of hiring "trained" personnel for babysitting or respite care. Special equipment, special needs toys, expensive foods for special diets, travel to medical specialists, un-reimbursed medical expenses......What else do you spend money on?

How do you save for the future and also provide financially for the current needs of your child?

What are parents to do? What do you think?
Tags:  finances,  saving,  debt
     

RAINBOW Posted By: ONLY GIRL
Posted On: 02/29/2008
NO MATTER WHAT PROBLEMS WE MAY ENCOUNTER IN LIFE THERE IS ALWAYS A RAINBOW AT THE END OF OUR JOURNEY.
Tags:  MAY GOD BLESS YOU AND KEEP YOU SAFE ALWAYS!
     

Autism Tomorrow Posted By: Irishpunkbd
Posted On: 02/29/2008
Autism Today founder, Karen Simmons joins resident safety expert and advocate, Bill Davis in co-authoring a much needed resource "Autism Tomorrow." The book will address strategies for reaching and thriving in the real adult world for all ends of the spectrum. Issues such as safety, emergency training, living arrangements, puberty, sexuality, travel, marriage, working, bullying, autism myths and transitioning are the tip of the iceberg.

If there are any subjects that you would like to see in the book please email me at irishpunkbd@yahoo.com
     

In-put, in-put!!!! Posted By: 4thekidz
Posted On: 02/27/2008
More in put is requested. Thanks for all the great ideas. I have another question. Regarding food during the Autism Weekend. Any suggestions on food for the children? Plans have been changed we are going to do a buffet breakfast and buffet dinner instead of a plated dinner (cost and staffing). So my question is what kind of foods for the children. I know that some may be on a special diet and want to provided some items for them to eat. Also I was thinking of making a picture board for the food items and activities. What do you think.
     

The Family Hope Center , Blue Bell, Pa Posted By: Bobsie
Posted On: 02/27/2008
I went to a seminar last night conducted by the Director of Family Hope Center in Blue Bell, Pa They take a holistic approach in correcting any brain stem abnormality. According to the speaker they can pinpoint the child's problem and cure them through diet, oxygen therapy etc. It sounded too good too be true so I am putting this out there to see if anyone heard of this organization and would appreciate some input.
Thanks
     

Question? Posted By: 4thekidz
Posted On: 02/24/2008
I wanted to ask for some input regarding the Autism Weekend. I wanted to have some sort of child entertainment for a few hours and don't really know what to have. Every child is different. My son loves balloon animals. Do think clowns would be to much, scare our little ones or stilt walkers, face painting etc. Any ideas, let me know
     

Summer Camp Posted By: Mrs.H.
Posted On: 02/21/2008
I am looking for a summer camp experience, or any suggestions anyone might have for one of my little guys. He'll be entering third grade, and his mom works full time. He needs a full day type something that would provide him the structure and pleasure he would need. What do you working parents do in the summer, or any ideas? Many thanks.
     

Brothers Posted By: ez4mebreezy
Posted On: 02/21/2008
Hi. My brother is survirly autistic.I want to know if all the sisters and brothers of autistic people get a long as much as I hear they do?
     

Medications and Autism Posted By: SuziMom
Posted On: 02/18/2008
I was wondering what types of medication children with autism (PDD, etc) are taking. My son is doing well this year (he has transitioned into regular 4th grade). He is 10 years old and has been taking Risperdal since he was 3. Yes, I see progress, but the Risperdal (I've cut down his dose) helps when he has what I call "brain hiccups" (he will repeat the same thing over and over again, talk super fast, etc). However, the side effects (not to mention the cost of the drug & the Neurologist who prescribes it, labs, etc) are really horrible. He has suffered (and continues to) from all the side effects listed-he has grown huge mammary glands, his appetite is out of control (I caught him eating a stick of butter, yuck) he has suffered heat strokes, heat blisters, profuse sweating (and we live in Florida). I am really scared. The doctor insists there is nothing else. My son is now extremely embarrassed over his weight gain, not to mention I'm gonna have to win the lottery to afford plastic surgery to remove the female breasts he now has (he can fit into a "B" cup now! I know this sounds ridiculous but we are on a State Health Program & I am constantly told I should "get on my knees and be grateful". Would anyone be willing to share their experiences with Risperdal or other meds?
Tags:  Medications,  Risperdal
     

Methamphetamines and autism Posted By: Norvaljoe
Posted On: 02/13/2008
I have really held back on my feelings about the vaccination issue, because my son was showing neurological symptoms as early as I can remember.....6 to 9 months?

But after reading that article about, New Jersey(?) [the school where all the teachers male children were on the spectrum], environmental factors are looking very suspect.

My son's birth mother was doing methamphetamines during pregnancy. When he was born he had 2000 ppm (parts per million) in his system, (it becomes detectable at 200 ppm). There are some seriously scary chemicals involved in the production of meth, and I can't say that the mom was manufacturing, but I am sure that she must have come in contact with those that produce it during the pregnancy.

He has 4 siblings that were also taken from the mother at different times in her life, but I have not been able to find them, or determine if they are on the spectrum as well.

Is anyone else aware of children with autism that were introduced to drugs prenatally, and particularly methamphetamines.

Norvaljoe
Tags:  meth,  drugs,  pre-natal
     

Evan goes to school, like an old pro!!!! Posted By: 4thekidz
Posted On: 02/13/2008
Well, Well, Evan is in his third week of K and he is acting like an old pro about it. We had rough first day as it was the day his father left at 5:30am (I made him) so as not to be a distraction for Evan. That day he refused to get out of the van. So I took him home and re-grouped. The next day we we scheduled OT first thing as he walked through the door. He loved it. I stayed in the school hiding around corners. He didn't last the entire time and we left early. That's okay. The next day a bit longer, still I was around the corner. By the third day they asked me to leave and come back at 2pm. So I did, when I came through the door a stream of teachers stepped out of the doorways to block me from going any further. They stuffed me into the office and told me he was doing sooooo well they were put on look out for me so that he wouldn't see me. Sure enough he came down the hall heading to music class! He made the entire day. HE ROCKS! I heard him in the class as they were gearing up to go home. "Excuse me classmates, I had a great time today but now it is time for me to go home." (Elvis has left the building) I sat in the other room crying tears of joy for him. Since then he heads to OT before class and that is when I slip out. He has a one on one aide who is great with him. They tell me he few moments in the class and needs to leave for a walk or OT room but other than that he is doing it! This is the first time in six years I have been alone and don't know what to do with myself. I am happy for him but also lost with out my little buddy.
Thanks for listening
Stephanie
     

Opinions wanted Posted By: 4thekidz
Posted On: 02/12/2008
For the Autism Weekend in May I was thinking of having the police department attend with their "kids kit". They will do fingerprinting and photo to have on record. I spoke with the police department and they stated that the person can take the kit home with them and do the fingerprinting themselves. It does not need to be done right then and there. My question for everyone is do you think there will be enough of a demand for this to have the PD there with this kit.
     

Vendors wanted for Autism Weekend Posted By: 4thekidz
Posted On: 02/12/2008
I am trying to find people/vendors to sell their Autism jewelry, T-shirts, hats, etc at Gunstock Inn in Gilford NH the weekend of May 30th and 31st. If anyone knows of someone in the NH, ME, MA area that can do this please contact me. Thanks for the help and thanks to everyone for the support.
Stephanie
     

Ten Seconds of Air Time Posted By: roedel
Posted On: 02/12/2008
What is the one thing that we take for granted every moment of our life? We do it every few seconds and it escapes our conscience thought. In fact since you have begun reading this you have already done it a at least a few times. We forget that we are breathing. That every couple of seconds we fill our lungs up with air in order to live. I am as much a biologist as I am a member of the Village people...so I am not quite sure of how the science of breathing works. I dont know how the oxygen passes through my body and into my brain. I am certain however that without doing it I would go the way of the unicorn. I also know that if I dont breath enough air I get dizzy...and I know that air is invisible...and that if people breath too much they can hyperventilate....and that the air in bigger cities smells like my uncle. Thats not very much knowledge for something that I depend on thousands of times per day is it? I dont respect how many times I have breathed in my life without anything going wrong. I cannot remember a instance during my 32 years that I have opened up my mouth to search for air and not find any. It is unimaginable to ponder how many times I have breathed in my life. Millions of times this invisible air has saved me without a thank you on my part. So tonight I want to give a special shout out to the O2 for keeping my skin away from a yucky shade of blue.

Keeping me alive is not the only thing that breathing has done for me. Air has been my tonic for mental health as of late. One of the practices I have been incorporating into my life is that when times get rough I spend a moment and just breathe. When stress arrives on my door like a vacuum salesman I dont react...I just take in air. Yes, it sounds a little Zenbut it has made a difference for me. When my world seems near disaster I just count to ten and breath. Yes, I stole this idea from one of my favorite TV shows LOST. (warning! warning! Geek alert! ) One of the main characters named Jack has a system where when he faces crisis he counts from one to ten in his mind. You let the moment pass over you like a wave and when you reach 10 you then address the problem. I liked that so much I started to use the 10 second count in my life During that ten second intermission I just inhale and exhale. This saves me from saying or doing the wrong thing by just reacting to the situation that is in front of me. In fact some of the greatest revelations I have had lately have come during those 10 seconds of airtime. I think maybe a good example would fit in nicely here:

A couple weeks ago my family and I was shopping at Target. I am one of those parents who kind of dreads taking my kids to public places. Anytime we go to a restaurant or to a movie I spend what seems to be several hours prepping my children so that they realize I dont want to make a commotion. I dont like making a spectacle...I like our family seen but nod heard. This is totally my downfall! I need to realize that when you have a six year old with autism and a three year old with a social agenda that being a traveling noise machine is part of the deal. Anyway, my autistic son Noah has been doing so great lately. We used to not be able to take him to places like Target because we were terrified he would run away or that he would want to experiment with some laundry detergent on the store floor. Those days have been behind us for a while now. Noah has just held our hand and been a total superstar the last few months we brought him. This day was different.he was having a bad day. I should have know this but I didnt recognize it until it was too late. By the time we got into the heart of the store he began to get really upset that we werent going to go to get a bunch of toys. Noah had not had a serious fit in over a year but my wife and I knew it was coming and there was little we could do. Within moments he threw a temper tantrum that could be heard from space. At one point my wife was trying to console him on the other side of the store and I could still hear him as if he were right next to me. He was so upset and I felt terrible. So I started to move in their direction. Needless to say that the other patrons started to take notice of his loud cries that filled Target. Since I was not with my son who was having a fit nobody thought I was his father. This allowed the others feel free to let their thoughts be heard. As my three year old and I followed the screaming I started to hear the others speak.

"My son would never get away with that!" was the first comment I heard from a girl picking out some shoes.. To be honest it hurt a lot...so I started to count and breath. 'One" I thought.

Then I heard from some older lady the classic: "What kind of parents would not be able to control their kids?"

I wanted to turn around and at least give some sort of crusty look that a character from 90210 would appreciate. This lady did not know a thing about our son. She did not know he was autistic. She did not know that when he got upset he was unable to calm himself down. She didnt know that my wife and I have worked tirelessly on his therapy. That we have forsaken so much money, time, emotion, and life just to get him to get ready for kindergarten! That lady had no clue to how much my wife loved him. That if she knew these things that perhaps she would have curbed her tongue...she however just assumed that it was all the product of bad parenting. Since I was still only on the number four in my mind I just kept walking. I reminded myself to keep breathing.

"What a cry baby! Waaaahhhh!" was the next line that hit my ears from some guy laughing in a leather jacket.

I went from feeling slight embarrassment to rage at this point. What kind of person says something like that about a little boy? I am not a fighter by any means. I am not brave...moths frighten me. However, I wanted to tackle this man and have him eat every single one of the dog biscuits he had in his cart. No doubt that he would have pummeled me into marshmallow fluff...but I still wanted him to pay for making fun of my defenseless child. Instead I exhaled and inhaled while walking toward the sounds of my crying son. I did think at one point how great it would be if one of these people would just offer to help or to at least give a smile of encouragment.

When I hit eight in my mind I saw my wife carrying Noah in her arms...I saw tears sliding down his bright red face. I had made it to ten and I was no longer angry or hurt by what anyone else in the store had said. I was only concerned for my wife and my heartbroken son.

My wife and I made an escape plan for them to get out while I continued our shopping. Their entire walk out of the store was sound tracked by my little guys wailing! My wife with a stride of courage that I am not sure I possess walked boldly past the self righteous audience out the front door. When I no longer heard his cries I knew that they had made it out to the parking lot. I stopped for a moment and began to think about what had just happened.

What would have happened if I would not have counted? I would have probably spent five minutes arguing with the old lady about proper parenting skills and the diagnosis of autism....and then I would have gotten a broken lip by going after the guy in the leather jacket. All that would have been done in front of my three year old whose hand I had been holding...and it would have delayed me from where I was most needed....next to my wife consoling my boy. Spending those moments just breathing and not reacting allowed me to have a moment of inspiration as well.

How many times in my life have I been like those people? How many times have I stood in line at the grocery store and thought something about the person in front of me? How many times have I acted judgmentally about a situation someone else was in. Standing there in Target I realized that I was just like those folks who were so cruel. I probably would have thought the same thing if our roles were reversed. I need to live my life with more empathy. I need to put myself in other peoples shoes more often. I must be the person in the store who would offer to help or at least give a smile of encouragement. In short my ten seconds of air time taught me I must become a better person.

So breathing is good for the body and the soul. It helps us to take a moment to just think without reacting out of emotion. My son Noah got over his tears within a moments once we made it back home that day . I, however, will never forget the ten seconds I spent breathing in Target. I hope I never will.
Tags:  autism,  hope,  personal story,  john roedel
     

Groan Posted By: jalyce
Posted On: 02/11/2008
When it rains, it pours!

They are fading out Jakes TSS in Kindergarten, I mean that is a story in itself, but now... the TSS at home is leaving, groan. Just as we were getting back into the swing of things. She was the best one we have ever had.

Sheesh..
(slumping back to the drawing board)

So how many of you out there wonder why we have TSS if they come and go as they do. Do you ever wonder if you are better off without them?
Tags:  TSS,  Kindergarten
     

planning for the future Posted By: Melanie
Posted On: 02/07/2008
I'd love to hear how other parents of autistic children have handled planning for their childs future when you are no longer there to provide. Wills, trust funds, etc. This is the stuff of nightmares (literally) for me, and I could sure use some help!
Tags:  future planning,  older autistic child
     

Come one come All ! Posted By: 4thekidz
Posted On: 02/06/2008
This is a first for me and feel I can pull it off. I will be hosting the Gunstock Inn's 1st Annual Autism Weekend. Location: Gunstock Inn, www.gunstockinn.com, Date: May 30th at check in time, plated dinner 30th, buffet breakfast 31st, various activities, literature, speakers, OT room, swimming, check out 31st. Room rates will be reduced to off season pricing for this weekend. Prices for dinner and breakfast will be posted this week. A portion of the cost of dinner and breakfast will be donated to a local Autism organization. I hope many will join me and everyone else for this weekend. We will learn, share and most of all have fun with the kids. Please contact me if you are interested or have any ideas.
Stephanie
     

What kind of conference would U attend?? Posted By: AWETISM
Posted On: 02/03/2008
A support group In Madera California would love your feedback as a speical need parent/teacher/ grandparent etc.. as to what topic the "You" want.Also a one day , two day and best time to start and end. You have that babysitter, no cost you just want to go. So go on ahead let your topic ideas roll. Thanks !!!!
Tags:  Guidance & Love For Our Autistic Dependants
     

THINK PINK Posted By: PebblePolisher
Posted On: 01/31/2008
I got to thinking how many boys have autism and I realized that I don't believe I've come across anybody that has a girl. Is there anybody out there? Boys are different from girls so naturally autism doesn't change that. Would love to hear from somebody that has a daughter with autism.
Tags:  girls with autism
     

Silent Auction Items Needed Posted By: Halynsmom
Posted On: 01/29/2008
My son attends a charter school specifically for autistic children. Over the past four years, he has made enormous progress. Princeton House does an annual fund raiser (Silent Auction) to raise the money necessary to provide the therapies the school system does not afford.

I just recieved this notice on the school's newsletter:

Believe Silent Auction Items

We have received only 17 silent auction items. We typically have 200 items for the fundraiser. If you have an item, please fill out the green form and turn it in with the item as soon as possible.
(go to link)
http://www.princeton-house.org/Newsletters/News2008-01-29.htm

I have the request letters and the tax forms necessary to write it off as a donation. Can anyone help? Or know a business that can donate?

Please email me at debra.donatto@gmail.com

Thank you,
Debra
Halyn's Mom
Tags:  Silent Auction donations,  fund raiser,  autism,  therapies
     



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