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What types of behavior therapy have you tried?

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What types of behavior therapy have you tried? What kind of results have you seen? Which were successful and which were unsuccessful?

  1. Jaime
    January 31, 2011 at 10:08 am

    My son is 7 and has ADHD, anxiety disorder, and Aspergers. He has a TSS worker that spends 5 hours a day with him, in school and then at home. He also had a mobile therapist for an hour a week. Starting this week, he’ll have weekly therapy sessions for 45 minutes. He has a great support system…teacher, therapists, BSC, and family. It has taken a VERY long time to learn his little “quirks” but now we know how to handle them better and how to help him through it with less trauma. Personally, I have read alot of books, asked alot of questions, and searched alot of websites. What I learn I try to pass along to my husband and guide him in the right direction with our son and his ‘moments’.

  2. January 31, 2011 at 10:11 am

    Other than PT and OT I don’t really know what behavior therapies exist, what my son would benefit from or even are available! When I take my son to his pcp he’s like “I have no ideas, tell me where you want to go and I’ll write the referral”. But I don’t know where I want to go! The last time I asked for a referral to the Autism clinic at ACH but I don’t hear really great things about them, and its been two months and they still don’t have an appointment for him. I do hear great things about DAN doctors but I can’t get in to see any. So now what?

    • Brandy
      January 31, 2011 at 10:16 am

      I’m in the same boat as you are. Hopefully we can get some good ideas from today’s blog.

    • Darcie
      January 31, 2011 at 10:24 am

      I know exactly what you mean! I hear all of these wonderful programs that are out there but when i look to see what i can do for my son there is nothing around here. We’ve been to an autism clinic and all they did was observe him for an hour and talk to me about what he is like at home. That was it and we haven’t heard anything more from them since and that was more than a year ago. Everything that we are doing now is a result from what I’ve researched online. Trial and error seems to be the way to go.

      • Nancy Fallaw
        March 16, 2011 at 5:57 pm

        Darcie, how old is your son? My grandson is a twin and is now 3 1/2 yrs old. He responded by laughing to being spanked for getting out of bed at night when he was younger. He has “learned” spanking hand and responds. You are correct – trial and error is your best friend. My grandson’s twin sister (talker) had been his biggest advocate – resulting in him learning to talk and say words, now sentences. He had speech therapy and occup. therapy from 18 months to 2 yrs and now goes to a special school for developmentally delayed (from one spectrum to the other) through the public school system. It is integrated with a peer group which his sister is in.

    • barb
      January 31, 2011 at 10:27 am

      I’m trying to get my daughter started with ABA (applied behavioral anylisis) therapy. It’s the best behavior therapy out there. You should read “Let me hear your voice” by Catherine Maurice. Also, keep plugging away with the DAN dr. It’s worth it! My daughter had her first appointment last month. We started the Gluten/casein free diet in november and have seen amazing results. Sh started saying 5 to 10 new words a day after 1 week n the diet. This is the first step for DAN protocol and u don’t need to see the dr to start it. Lots of info on the web. Also u can start him on DHA, cod liver oil, and multi vitamin, probiotic (if u start the diet make sure they are gf/cf. I HIGHLY recommend trying biomedical! Amazing results for my little girl! If u can’t get in to a DAN dr, get on a waiting list now. And look into ABA. There’s places that offer it, and it is now covered by insurance. Good Luck!

      • Bridget
        February 4, 2011 at 5:00 pm

        Is ABA covered by insurance in Michigan… not sure what state you’re in.
        My son needs it, but it’s very expensive I hear… which is why I’ve been putting it off..
        He did start talking after 1 week of cod liver oil!

    • January 31, 2011 at 1:26 pm

      Hello,

      I am raising my granddaughter with Autistic traits. I currently run a mental health agency in NJ and could never find services for her. I would pay large amounts of money to people for ABA services and decided ENOUGH!! So I started a Autism ABA program where I hired BCBA’s statewide and Special needs teachers to do ABA under the direction of a BCBA and it is covered by most insurances. I am in NJ and am currently offering the services in Monmouth/Ocean/Morris/Sussex/Passaic Counties and am also using it for my granddaughter and what a difference in a few months…Sometimes you just have to create the service to get it. My agency can be found under caringfamily.org because I am a caring person that is also raising a special needs child within the autism spectrum and Laura Lang is the co-ordinator at 732-780-2799 ext 215 and she can help guide you through the process. I wish you all the best. Roseann

    • Sam
      January 31, 2011 at 1:35 pm

      Has your OT set up a Sensory Diet for your child. Daily senory input will prove your childs behavior and allow him to learn and become more calm over all. Sensory Intergration. It has totally changed my son. If he goes with out sensory diet for a week or better yet 2 weeks then he regresses to sensory overload. My sons listens to prescribed music therapy (headset), swings for 45min-1 hour a day while catching a ball or throwing ball into a bucket held by someone to the side of the swing, jumps in ball pit, smells different spices and/or foods, wrap up in a snug silky blanket, plays in finger paints and shaving cream, jumps on a small one person trampoline, others too. It really helps with the ADHD like symptoms of Autism. Let me know if you would like more information. It really helps with behavior by desensitizing them.

    • Karen
      January 31, 2011 at 9:02 pm

      I’m not an expert, however, for 10 years of my life I provided ABA services, specifically, Verbal Behavior therapy, to children with autism. If I hadn;t seen results in the children, I would never have continued. The foundation for this program, is based in solid science–BF Skinner’s behavior modification. At any rate, verbal behavior is a branch that is still ABA, but focuses on developing verbal skills through the use of mands, tacts, and intraverbals. Dr. James Partington and Vincent Carbone have some wonderful work out there and Dr. Carbone has a clinic down near Long Island as well. Also, medicaid and head start type programs often will cover some of the costs of a program. And, if you are incredibly intense and demanding, many schools will provide ABA to the children. Several of the kids I worked with forced their school districts to send their special education teachers, OT, and PTs to trainging on Verbal behavior. At the very least, while the children were at school, they were encountering consistent expectations to those in the home program. Goodluck with your search

      • Bridget
        February 4, 2011 at 5:12 pm

        What genre of music is prescribed?
        Thanks,
        Bridget

    • Mackenzie
      February 3, 2011 at 9:28 pm

      Look into ABA therapy it’s amazing! Also research Jenny McCarthy’s biomedical approach~I am doing it all (except the chamber thingy and IV chelation) & we have seen MIRACULOUS results especially the gluten/casein (dairy) free diet!!! Best wishes :)

    • Ester
      February 4, 2011 at 6:52 pm

      Victoria Meyers

      If you don’t mind me asking, where do you live?
      I live in the Tampa, florida area and found a great DNA doctor by the name of David Berger. He has a website if you look him up, maybe he can recommend someone to you because he’s done a lot of conferences all over the nation.

    • February 5, 2011 at 7:02 pm

      My son Raven gets 3 hours a week with a Behaviorial Therapist. She visits him at school, home and community. She is great!!! She helps us to evaluate my son’s behaviors and come up with treatment plans to work around them. We use provider 50 services through the Colonial Intermediate Unit 20. I hope these websites help you out.

      http://www.ciu20.org/

      Provider 50 (Wraparound) Services: Provider 50 services are a short-term treatment program focused on addressing the behavioral and emotional needs of children/adolescents from birth to 21 years of age.

      I suggest getting in contact with your public assistance office or Mental Health Offices.

    • Sue
      February 6, 2011 at 2:55 pm

      When my son was in kindergarten, 1st and 2nd grade his teacher made a behavior sheet for him to come home with everyday. It simply said Excellent, Very Good or Not Good. Every time it said Excellent, I took him to the local toy store to pick out a $5.00 Ninja turtle character. Every time it said Not Good, I explained that I had to take the Ninja turtles and put them on top of the refrigerator for the night. He got them back in morning. Slowly just Very Goods and Excellents came home. You can modify a version of this by buying some cheap toys or books or cards, blocks, for a reward. There is no need to yell or condemn, the sheet itself and the reward or taking the toy away for the night did all of the work. Now you can tell this was back in the very early 1990’s. We didn’t even know what autism was. I just knew he was different. Other tips – (1) Music works wonderfully and so does singing to your child. (2) Desensitize your child to the new building, office, supermarket, bank whatever it is by bringing him/her just to the door and leaving several times. Next, go into the lobby several times. Before you know it you will be able to go into the building, store, supermarket, bank, without him/her screaming. Another tip – once you get him/her used to the supermarket buy the same exact thing for your child to eat while you shop – a peach worked wonders for me. Encourage language by speaking like you are a foreigner – want milk? want cookie? Jimmy good boy. Tie shoe. And last but not least, prepare you child when you have to leave a place. Say, we are leaving in 10 minutes. Then say we are leaving in 6 mins. We are leaving in 4 minutes. We are leaving in 2 mins. Now we leave. It works.

    • Susan
      February 15, 2011 at 9:54 pm

      Unfortunately PCP’s as a whole do not know very much about autism. A good start is going through early intervention or your school district’s Intermediate unit. You can tell them that you would like to start a home based ABA therapy program. I would also go to a developmental pediatrition to see what they could recommend in your area. You could also call your County Dept of Welfare and tell them that you have an autistic child and you want to see what services could be provided. I hope this helps.

  3. elizabeth lansaw
    January 31, 2011 at 10:21 am

    my son is 14 years of age, i have been everywhere to get help with his behavior, tried several types of meds, none has worked, tried time outs, rewards, punishment, do this and get this, nothing has worked, now he is big with behavior problems, we need help, i love my son very much and he loves me, we would appreciate any suggestions, we leave in dyer co, there is nothing here for autistic children, but i have went as far as nashville no help to be found, we do not have money to pay for private tutors, only public school, which has got us nothing, my heart goes out to everyone with a child with a disability

    • Theresa
      January 31, 2011 at 11:22 am

      In general, punishment doesn’t work to change behavior to something positive that you want. It may stop someone from doing what you don’t want, but doesn’t typically work to get them to do what you DO want.
      My son started going to a special school when he was 12. His behaviors were pretty bad, and he got violent in school, so they out-placed him. We wanted him educated in his home school, but it turned out to be a blessing in disguise. The school we found uses a level system – red, yellow, green, blue, gold. Each level has increasingly better rewards, and requires longer times on that level to get to the next level. Various behaviors can get you busted back a level, or all the way to red (eg. violent behavior). To get him to buy into the system, at the beginning rewards were very frequent, and very good (Walmart gift cards of $5 or $10 were favorites). As he bought into the system, rewards were gradually scaled back to what all the other students had, but the intense & highly valued beginning got him into it. It does require a lot of patience & persistence on the adults part, but was so worth it for my son. Clear rules and rewards are needed so the child knows the expectations as well as what’s in it for them. Keep daily charts for everyone to be able to follow what’s expected and what has been fulfilled. The number of days each level had before moving on increased: red – 3, yellow – 3, green – 5, blue – 30. An example of a blue level reward: on Friday, choice of lunch. That doesn’t mean the cafeteria, that means from wherever they want… chinese, McDonald’s, pizza, whatever. This is one of my son’s favorite rewards and he’s not happy when he drops a level and loses it, but it’s motivating to get back to blue.
      This may or may not work for you, but it’s an example. The key is structure (clear rules), intense at beginning, and diligence in follow-through. Once you get the buy-in by the child, it works great. It’s been 5 years for my son, and it still works great to help with his behavior.

      A suggestion for all parents… read as much as you possibly can. There’s so much out there. It won’t all work for your child, but you may find what does work, and/or it may lead you to figuring out what does work for your child.

      Push the school system to provide your child’s Appropriate Education that they’re entitled to.

      • Susan
        February 15, 2011 at 9:43 pm

        Verrrrry well put!!!

    • Kate
      January 31, 2011 at 11:28 am

      We also have a 14yo boy and are experiencing major behavioral issues. Puberty seems to have amplified everything. We do have a lot available in way of help, and are futher limited due to finances as well. He is on Abilify for mood disorder as well as another medication for when he is manic but those clearly only treat syptoms and have not changed behaviors. We currently have decided to have him write lines as punishment as there seems to be a disconnect between cause and effect… we are hoping that writing and writing and writing will allow him to remember to follow rules. We are thinking, maybe incorrectly, that a bit brainwashing may help. Good luck!

      • Theresa
        January 31, 2011 at 12:32 pm

        I hear ya about puberty, Kate! It sure can amp things up.
        Writing and writing, though? Do you know of anyone who actually learned anything from having to do that as punishment? I know I hated it if I had to do it, and didn’t learn anything from it… just that writing that much hurt my hand.

        Something you might want to consider doing is social stories with your son. If he’s open to it, these can be great teachers. (We’re – us & school – still working on getting my son to use them, with varying success.) They work great for some kids. They model the kind of behavior you want to see in whatever situation the story is about. You can also make them into a game by cutting up the pictures and have your son put them in order. I know the teachers and social workers at my son’s school love them.

      • Kate
        January 31, 2011 at 2:56 pm

        Sorry, meant “do not” have a lot available. Anyway, Theresa, there is a LOT more going on than Asperger’s, PDD, BiPolar… he is such a high level functioner that he lies and manipulates, which is very uncharacteristic for autistic children. We take each behavior on a case by case basis, and we’ve obviously been at this for a long time so my explanation was very simplistic. The writing… while we all hated doing it… actually has been somewhat beneficial. We are trying to “change the tape” of breaking the rules “just b/c I want to”, it keeps him calm and focused for periods of time, it has actually improved his hand writing (an untended consequence that will prove to be helpful in the long run)and he is remembering to stop and think about what he is supposed to do. This would not work with every child… as nothing ever does but while we see some benefit we will use this tactic; when it ceases to be effective we’ll try something differnt. The social stories haven’t worked, he misses the points as he has auditory and visual processing issues. His therapist thinks the writing has been effective because his rote memory is outstanding and this reaches that for him.

      • Theresa
        February 1, 2011 at 10:44 am

        Kate,

        Glad to hear that the writing is working. I’m definitely in the camp of whatever works. My son lies as well, but he’s not particularly good at covering his tracks, so we usually end up finding out about it.

        It’s too bad the social stories didn’t work with your son. I think they’re a really good tool, just doesn’t seem to always work. My son resists them because he doesn’t like “being told what to do.” If he didn’t hate writing more, I’d try the writing over and over.

    • Mistty Smith
      January 31, 2011 at 5:31 pm

      We live about an hour out of Nashville, and just a few years ago we could not find services for our son. This past year, however, we have seen many new facilities spring up. There are several in the Franklin/Brentwood area, including The Autism Foundation and the Autism Engagement Center. We are currently attempting to obtain services from ABA Nashville and Faces of Hope. The Kennedy Center at Vanderbilt has a comprehensive list of local providers. I don’t know the quality or the affordability of the facilities…I know the Autism Foundation uses a sliding scale for billing. I also don’t know how difficult it is to get an appt. We are still playing phone-tag with ABA Nashville..Hope this helps..I know it is frustrating..Good luck to you.

    • Mistty Smith
      January 31, 2011 at 5:38 pm

      We live about an hour outside of Nashville. A few years ago we could not find services for our son. Now we are seeing new facilities spring-up in the area. There are several in the Franklin area, including The Autism Foundation and the Autism Engagement Center. The Kennedy Center at Vanderbilt can provide you with a comprehensive list of service providers in the area. Hope this helps..Good luck.

    • Kelly
      February 3, 2011 at 1:44 am

      Try http://www.acesautism.com
      They have an office in Colorado Springs. This is a great company.

      • Kelly
        February 3, 2011 at 1:51 am

        Oops I’m sorry I thought you meant Colorado not county.

    • Julie Stroud
      February 4, 2011 at 3:03 pm

      My son is 15 who is also getting big for his age and has an extreme behavior problem. Now he is referred to PRTF and things have steadily gotten worse. He can recite everything he has learned to control aggression, but when he is frustrated, he can’t utilize a single one of them. I need tosave my son before he gets caught up in the legal system…

      • Julia
        February 6, 2011 at 6:03 pm

        Julie,

        I can relate so much to how you describe your child’s behavior. My son is 9 yrs old with a diagnosis of autism. He has benefited from ABA, Behavior rewards, sensory diets, social stories, calming books and tapes. However, when frustrated everything he has learned seems to go out the window. He has absolutely no impulse control. Hoping to avoid the heavy hitting medications due to potential side effects. Thinking of trying the gluten free diet. Have you tried the diets or medications. Appreciate your feedback. Thank you.

    • February 8, 2011 at 12:50 pm

      Hi I just wanted to share a book with you. It’s called The Explosive Child by Dr Ross Greene. Your comment sounds like you would benefit by reading it. I too have a son who nothings works, he is just 7, diagnosed as ADHD, ODD, but i think he has Asperger tendencies as he doesnt do change and meeting new people is the worst. As i read the book i cried because someone actually out there knew what i was going through. I dont have the his plan down yet but just knowing that im not a bad mom has been a huge help. Also go to his website http://www.livesinthebalance.org/ Hope this helps if only a little.

      • Barbara Pons
        February 8, 2011 at 1:34 pm

        That was an awesome book. I learned a lot from this book.

  4. Helen
    January 31, 2011 at 10:39 am

    I am so interested in hearing what caretakers of kids on the spectrum have to say about this issue. I know of a number of students who did quite well simply being involved in group competitions (Science Olympiad as an example). Sounds simple, but in some of the national beginning with local school and then state, competitions, they were able to: focus on their area of interest; were with other students with the same, or similar, interests; learned teamwork; and simply had fun being with others their own age.

  5. January 31, 2011 at 10:40 am

    waiting about 8 months for one to contact me .by the time you get them the problem has either took care of it self or has gotten ten time s worse. what do you need them for when they can’t contact you when you need them. looks like they want the problem to clear up so when they do finally come it’s done no work for them. either that or they don’t know what to do so its easier then showing up when the problem is big. who needs them.
    .

  6. Leanne
    January 31, 2011 at 10:42 am

    My daughter has Asperger’s. OT has made a world of difference in her behavior as has Social Skills class she takes. It is in a group setting and they learn appropriate behavior. It has be been wonderful.

  7. Vicky
    January 31, 2011 at 10:50 am

    My son is 21, has Asperger’s and bipolar, and lives in an adult foster home. He’s always been exceptionally charming, sincere, and likeable when he’s not stressed, but becomes easily aggitated and exhibits aggressive behaviors when he’s stressed. Oh, and, everything stresses him.

    I’m glad to report a success story here. Due to a good behavior plan (which took nearly 2 years to obtain) and several good people implementing it consistently, my son’s aggressive outbursts are not longer a safety threat, and they happen much more rarely. The behavior plan gave him immediate consequences which were significant enough for him to dig deep and find the control necessary to contain them, and also gave him rewards for which he was willing to work.

    I often find myself wondering how his life, and ours, would be different if we had had the knowledge and support to implement a good behavior plan for him years ago. But sadly, in my community (Grand Rapids, MI) the schools and other community supports for behavior management seemed to be notexistent or grossly inadequate. Even our private therapist, who has been the most help in this area, was unable to give us all we needed with only an hour a week. How I would love to see parents and schools work together to write good behavior plans. And then I want parents to have supports in place so they can weather the flare up of behaviors that will undoubtedly happen when a good plan is implemented.

  8. Kanren
    January 31, 2011 at 10:53 am

    My son is 15 now. When he was first diagnosed, at 6, we went to the Easter seals childrens guild. There I learned how to communicate with him since he very literal in his thinking. They helped me alot. Such as using pictures to show the next activities. 3 things at a time. For example one would be eating, then shower, then bedtime. We have video taped his meltdowns and replayed them so he could see what he looked like. He didn’t like that person he saw. I have since used his toys, movies as rewards or punishments. I will take them away for “bad” days or give extra time for good days. The main thing that I have learned is to be consistant always and that tangible rewards are the best. He doesn’t do well with the words “good job” or “I am proud of you” but if he gets a sticker or extra time that means more to him. I am proud of all the accomplishments that he has made.

  9. jonnie ojedis
    January 31, 2011 at 10:58 am

    my son has pdd nos and has been in aba ever since his dignoised and it has helped here and there but we are still working on a lot of stuff

    • Sam
      January 31, 2011 at 1:41 pm

      Try a Sensory Diet! It works! I’ve witnessed it with my son. Your OT should be able to evaluate your child (with your input) and devise a senory diet plan. My son has been on one since 2Y and now turning 4. He is doing marvelous! It helps desensitize them so they can learn. My son attends a learning center 5 days a week which is rich in sensory diet/sensory input. Sensory intergration.

    • Sam
      January 31, 2011 at 1:59 pm

      Here’s some of the plan my son has been on for amost 2YR’s. It has worked wonders for him and the other children at the center.

      Speech Therapy – 4 times a week (45 min session) and constant set up for speech usage by teachers and family, also feeding therapy, work on drooling by improving muscle tone by blowing on whistles and lip depressors

      Minimal ABA

      RDI – teachers

      Occupational Therapy – 2 times a week (45 min session) – swinging, playing games, writing, playing in pool of beans, Interactive Metronome, LOTS of other activities if you’re interested

      Sensory Diet 5 days a week – prescribed music therapy with a headset, jumping on trampoline, bean bags, throwing an object into a bucket while swinging, finger painting, playing in shaving cream, smelling spices, combing, prescribed music therapy, silky blankets, bean bags, and other activities

    • Sam
      January 31, 2011 at 2:02 pm
  10. Sridhar Mudhan
    January 31, 2011 at 11:04 am

    Like Barb, we too have found ABA a very practical and evidence based method that works for our autistic daughter. To understand ABA in layman terms and how it can help one’s child Catherine Maurice’s book ( let me hear your voice) is a great starting point. Thereafter I’d recommend setting up a home programme. ABA, to be effective needs about 20 – 30 hours per week of one-to-one therapy with the child under guidance from a professional ( BCBA-Board Certified Behavior Analyst). My daughter, though non-verbal has shown dramatic improvement across several skill areas -receptive language processing, Manding (asking for desired items), Tacting ( labelling items in sight), Using sign language, independent play, turn-taking etc. The other positive thing about ABA is that the current trend focuses more on positive reinforcement methods with the child being offered many opportunities to win and learn. I’ll be happy to share more info should anyone wish to know further. Best regards, Sridhar

    • Sarath
      August 15, 2011 at 11:37 pm

      My son who is 3 years old is diagnoised with autism, we are waiting for the therapy’s to start for the one and half month as there is a bog waiting list. I live in illinois.While reading your comments above i am just wondering how you have got 20-30 hours/week. I just need your help on how to go about it.Please help me. Thanks

  11. Randell Carr
    January 31, 2011 at 11:09 am

    I have a son with very mild CP and mild Autism. He is 14 years old and after years in the public schools and three years in an autism school’ABA’. We found that the public school was doing more harm then good. so two years ago we pulled him from the public school and started sending him just to the ABA therapy which seems to be the only thing that works with comunication. He is non verbal and has speaking devises. The problem we are starting to have is he is starting to get agresive when he dose not get what he wants. not all the time but he is getting big. any helpould be appreciated Randell Carr 1-309-269-1203

  12. Theresa
    January 31, 2011 at 11:37 am

    This is not a therapy, but it really helped my son with socialization, and made him feel accepted and part of a group (he is on the mid-upper level of the spectrum.)

    When he was young, we got him involved in Cub Scouts. He loved it. The changes in uniform from year to year were challenging, but he loved being with the boys. His dad became a leader so that there would always be someone there to handle any issues. Cub Scouts is family-oriented, but being a leader gave a guaranteed in at any function or meeting. It also allowed my son to go to camp which was always a huge success. Crossing over to Boy Scouts was too challenging for him, and he dropped scouts. But we kept trying to get him interested again, and a few years ago were successful. Being in Boy Scouts has been wonderful for him in his teen years. He gets to interact with boys his age independently (leaders in Boy Scouts are there for guidance & planning, but it’s mostly run by the boys.) His dad is still a leader, but is more on the periphery. Being in scouting has been of immeasurable value to my son, and I’m sure to all the other boys and adults he’s been involved with as a result. If it’s possible, I highly recommend looking into getting your child involved in scouting.

  13. Kelly
    January 31, 2011 at 11:41 am

    My son was diagnosed with PDD-NOS when he was just about to turn three. One year ago exactly he was completely non-verbal, with behavioral and social issues. Have been doing Applied Behavioral Analysis with him for one year now and it has been life-changing. He is speaking fluently, can express himself instead of screaming all the time, stopped many of the rigid and repetitive behaviors and on and on. We do ABA in our home – started slowly to building hours and do 30 hours approximately every week. We live in a small town without tons of options for this type of therapy and chose to go with the program through our local University with experience behind them. This stuff works!!!! I am relieved beyond, we still have work ahead of us but so much success in such a short time.

  14. MaryAnn Nelson-Jackson
    January 31, 2011 at 11:42 am

    Legend my grandson is 8 non-verbal,and yes on the Autism spectrum.When Legend was diagnose with Autism it was called a puzzle because every situation is not the same and most of all it was a puzzle to the medical community.I find it facinating that now there are books/experts/on what is a puzzle.So many experts and no cure or no definate origin on the cause of AUTISM.However,I have made my grandson my fulltime job-No vacation time or sick time he is my being(Does that qualify me as a expert?)I can speak on my situation-Legend is well behaved,Very neat,he has chores making his bed,helping with trash,etc.When I approached-I did not put limitations on what I would accept what I could not accept!I parent Legend as I parented his mother.Legend does not see his self as different the world does.Set goals and reach them.Get a routine that works in your household.Legend is in bed by 7pm is up by 4:30am-He will listen 2 music until 5:30-wash face brush teeth by 6am he is eating breakfast,after he will exercise,play ball,and off to school…….After school I will continue with teaching until 5pm.5pm until 6pm he will play ball with grandpa,6pm legend and I will sit and talk,read,and pray 7pm we say goodnite.This is a Seven day a week/Different is on weekends I am the Teacher with no paras to assist.You and only you alone can have your child/grandchild behave,I understand with other issues combined you need help seek it but please investigate,and Do not make accuses,Utilize timeouts.And when u are disappointed they know they will read your body language,sound of voice etc.Also,when they stem(waving of the arms)imatate them,out in public do the same,My grandson would laugh and now it is a game and rarely stems anymore.And before closing:It is not true that Autistic children does not show LOVE,I get more hugs and kisses than I can count,My grandson will wait until our eyes meet because he is reading me.Remember the puzzle is not complete therfore No one is an expert.God Speed.Bless it be.

  15. January 31, 2011 at 11:47 am

    Your work with Autism is amazing. We know on behalf of my Granddaughter (Adaline) you will have more important discoveries. Tahnk You

  16. January 31, 2011 at 11:56 am

    My 3 and a half year old daughter has been doing 32 hours a week of ABA Discrete Trial Teaching along with 1 hour of speech and OT a week and 7.5 hours of integrated pre-school a week for social skills training. The ABA has made all the difference in the world. When she was diagnosed almost a year ago she was pretty much non-verbal and had all kinds of stereotypic behaviors. Now she can label, identify, echo, imitate, make single word requests and can be prompted to add ‘I want’ to the requests. And most of the odd behaviors have been replaced by communication! I’m hoping that another year or two of this will catch up her delayed skills to age appropriate levels and allow her to be in a main stream classroom with minimal help from an ABA trained aide.

  17. January 31, 2011 at 12:49 pm

    We’re so discouraged. Our son (4yrs 9mos)was diagnosed in December with autism and last Friday they changed it Aspergers…still on the spectrum, I know. The psychologist who did the diagnosis saw him a couple times and then told me and my husband that we’re doing great and we don’t need to see her anymore! We finally have gotten in to see an OT, but don’t have a standing appt yet, so it’s hit and miss as they have cancellations, but she has noticed symptoms of dyspraxia too. His behavior in the last month has taken a nose dive and he’s suddenly become violent–punching me in the nose, eyes and cheeks while laughing and telling me he’s going to poke my eyes out. He bites, pinches and kicks when we try to calm him. At daycare, he is being deliberately defiant and rude. I’m guessing it’s either attention seeking or that he’s bored, but don’t know what to tell his teacher to try/do.

    We don’t know where to turn and the OT and the psychologist haven’t returned my phone calls or e-mails. I’ve found one place in town that provides ABA and we’d like to try it, but as it is we can’t afford his continuing OT appts. We’re pretty much living paycheck to paycheck and have cut so many corners already! I guess I need to find some books that will give us tips and advice, but I’m discouraged that none of the “professionals” here seem to want to help! And they both came highly recommended by our local autism chapter!

    • Barbara Pons
      January 31, 2011 at 1:28 pm

      Call DCF Voluntary Services. They helped me out so much. My son is now 10 years old and diagnoised with PDD-NOS, ADHD and anxiety disorder at the age of 3. DCF paid for Creative Interventions to come to my house 2x’s a week for 1 1/2 hours. They worked very closely with my son and with the family. They taught us all kinds of rewards systems. They also paid for classes for every Saturday at Creative Interventions. The saturday classes were for social skills. They were so awesome with him. He is doing were well now. He aggessive anger is minimal now. I am so proud of him. He does receive OT and PT in school. I also had him put in a special school. All of his anger outbursts made him feel like an outcast. His self esteem is up and he is doing great. GOOD LUCK!!!

      • Barbara Pons
        February 1, 2011 at 1:49 pm

        Before I started with these services i never had a minute to myself. I could talk for a second with out my son interupting and wanting something. They used the aba therapy approach. We had all kinds of picture schedule for him to do something by himself for awhile and then some time with us. it was all pictures schedules. It really worked awesome.

    • Kay
      January 31, 2011 at 3:09 pm

      As an ABA Therapist myself, I take care of a 6 year old boy with Severe Autism.. He gets all of his therapy through CAP. You should go to your local social services and apply for Medicaid and CAP assistance. Together they can help pay for OT, Speech, home and community support that can be used for ABA therapy, As well as Personal Care and Respite hours.

    • Theresa
      January 31, 2011 at 8:04 pm

      Thanks for the info Kay. Even though my son doesn’t do ABA any more, I’m going to look into that for other therapies.

    • Barbara Pons
      February 1, 2011 at 1:34 pm

      I wonder if the CAP is simular to the ICAPS here in CT. I am assuming it is. That is very simular to the program I received thru DCF. I had a choice because they were identical.

  18. Barbara Pons
    January 31, 2011 at 1:29 pm

    DCF Voluntary Services helped me a lot!

    • Theresa
      February 2, 2011 at 11:07 am

      Barb,

      I tried getting services through DMR when my son was young, and the only thing they would/could offer was money for respite. I kept telling them I need the SERVICE, the qualified people… I don’t have that. I could have the money, and I would have to find the people. They offered nothing else. And then, when my son turned 5 he had to have his IQ evaluated. Although his non-verbal IQ was pretty high, his verbal IQ was very low. They averaged them together and he got just over their limit (70 or 72?) Sorry… your son is no longer eligible for services. That was very disheartening. Not once did they suggest trying to see what was available through DCF. Of course, this was in the late 1990’s, and I believe DMR has changed their policies to include autism, but I’m not sure. I should check that out… and DCF, although at 17, I don’t know how much DCF will be able to do.

      Thanks!

      • Barbara Pons
        February 3, 2011 at 3:11 pm

        My son has the same issue. His non verbal IQ is high and his verbal IQ was very low. He was also at like a 72 but dcf voluntary services helped him. They would have kept on helping me but the girl that I had was promoted and no longer able to work with us. She was awesome. They gave me 2 new girls that came to the house and I really didn’t like the way they wanted to do things. They didn’t listen to me at all so I ended up saying i was done instead of saying that i wanted someone else. I also tried with the DMR but my son’s IQ was too high. There should be an 800 number to call to get a case worker to help you. I don’t know what state your in but we are in CT.

      • Theresa
        February 4, 2011 at 10:52 am

        Barb,
        I’m also in CT.

      • Barbara Pons
        February 4, 2011 at 11:15 am

        I am in East Hartford. The DCF Hotline is 800-842-2288. My social worker was Andrea Colapietro and she was in manchester. Give them a call and maybe they can help you.

  19. randellcarr
    January 31, 2011 at 1:52 pm

    Darcie,
    Tell me about your child. I will tell you if there are similarities with my son and what we have done. Randell Carr 1-309-269-1203 ran@hilandtoyota.com

  20. January 31, 2011 at 2:16 pm

    Our son is now 12 and has taken to extreme self injury. Even though he seems in a good mood, he tries to hit his head very frequently. Has anyone had any success in treating/diagnosing thiis type of behavior?

    • Theresa
      January 31, 2011 at 2:36 pm

      Robert,

      I’m fortunate in that I’ve never had to deal with head banging. Maybe your son is getting some stimulation out of it that he feels he needs, and doesn’t know any other way of getting. If your son gets occupational therapy, start with the therapist. Explain what you’re seeing, and ask if they have experience with it. Most likely they do. Ask if there are sensory techniques that can be tried to hopefully take the place of the head banging (if a sensory need is what your son is trying to get.) If there’s no OT, try starting with your Planning & Placement Team at school- you can call for a meeting at any time, it is your right. Again, explain the situation & brainstorm. Ask if an OT can be called in for a consult, and then maybe get some OT added to his IEP (if it’s determined that’s what he needs to stop the head banging.)

    • Jamie
      February 3, 2011 at 2:12 pm

      My son is almost 9 & he also does things to physically hurt himself, he pinches himself, I actually noticed a bruise on his forehead the other day & when I asked him what he did he proceeded to tell me he smacked his head into the wall, now I dont know if he did it cuz he was mad of what cuz he usually only hurts himself when hes mad, let me know if you find any answers

    • Ester
      February 4, 2011 at 11:28 pm

      Robert

      I have two children on the spectrum and what I can tell you is be careful of certain foods that your son might be consuming. I saw a big change in behavior on my children when I took dairy products away. Also try to keep dyes away, especially red or blue. that can also be frustration from not being understood. Is your son verbal? I know of a child that would bang his head on the school desk because of frustation (he was non verbal).

    • Anne
      February 14, 2011 at 3:28 pm

      I believe that ABA can be effective in helping with self-injuring behaviors.

  21. Theresa
    January 31, 2011 at 2:27 pm

    Nicole, I know it can be very disheartening and discouraging, but hang in there. Reach out to other parents in a support group if there’s one in your area. If not, maybe start one!

    One of the keys with trying to reduce/eliminate bad behavior is figuring out what is precipitating the behavior. Try to notice what was happening just before the behavior. What was going on in the room? Who was in the room? Was was your son saying or doing? What were you saying or doing? Is there some visual or oral trigger to it? You’re basically trying to find any common cause to what’s going on in your son’s environment whenever the same behaviors occur. Write these things down and keep track of them. There are books on this, and I would tell you what to look for if I could remember what the clinical term for this analysis is. Anyone out there know this? When you can identify what leads to the behaviors, it’s easier to address them and figure out how to eliminate the behavior.

    Now, more specifically to what you mentioned is happening with you the last month. What you’re describing his actions to be sounds to me like the Three Stooges. Is there any chance that he’s seen any of their shows, a movie, a commercial, or a clip that shows any of this? Everyone always laughs, so a child would think it’s acceptable. If he has, no more Stooges for him for a while. lol Then you have to explain/show him (maybe with the sound off?) that this hurts people and is not how you behave.

    Now on to ABA. I think ABA is great, and don’t know where my son would be now without it. We forced our school system to implement it when my son was 4 (1997 – yes, it’s been around that long and even longer). He had spent a year in the classroom basically wandering around because they couldn’t get him to sit and attend. He learned almost nothing. After reading “Let Me Hear Your Voice,” I did as much research as I could on ABA, & presented it at a PPT as the appropriate education for my child. There were other things in my presentation, but I’ll bypass that. We lived in a large town with 11 elementary schools & a pre-school. They started ABA at 3 of them, along with my son’s school. At the end of the 1st month of ABA, we went to his school and saw him sit in circle with the other kids listening to the teacher (he still needed a 1-1 to keep him focused). Then he got up in front of everyone and sang a song!! Complete with matching arms for the tree and other movements! It was amazing, and still makes me tear up 13 years later. They did ABA at school, and we did it at home, too. Generalization to different places and people is very important, otherwise your child may end up being able to do things with only the 1 person who’s been teaching him, and/or only in the 1 place he’s been taught. So…. what I would do…. Get a couple books on ABA so you can start it at home, even if you can’t get it elsewhere. Visit the place that has it so you can see how they’re set up and can mirror it at home. Try and get help from your family & friends to do the ABA. It’s not difficult, just takes time. Even if you can only get a few to help for a few hours a week, that would be of great benefit, & provide you with a break.

    And lastly, I would ask your OT if they think a sensory diet would help your son, and then ask them to implement it and show you some techniques. Sometimes behaviors occur because of over or understimulation, and a sensory diet can help refocus.

    • January 31, 2011 at 4:31 pm

      You are brilliant! As a matter of fact, my son saw his very first episode of the 3 Stooges a few weeks ago! He has delayed echolalia and is constantly repeating movies, books and TV cartoons…and although he rarely acts them out, there’s a strong liklihood that he is in this case! If that’s what this is—whew! I feel a LOT better!! Thank you, thank you!

      I have heard wonderful things about ABA and we have a place in town that offers it. I’m going to call them. I will also look into getting some books. Any that you recommend in particular? I’ll add them to the top of my(rapidly growing) ASD-related reading list.

      We have only seen our OT twice, but she had mentioned Listening Therapy and a sensory diet at home. I haven’t had the chance to ask her more about it, but hope to at this week’s appt.

    • Theresa
      January 31, 2011 at 8:19 pm

      Nicole,

      If that is what prompted this, I’m so happy that I could help. Good luck with that!

      As far as books for ABA, I can’t really help you there. My son hasn’t done ABA about 8 or 9 years (he started rebelling against the structure & repetition, and we eventually couldn’t coerce him into doing it anymore,) so I’m not up on what’s currently out there. His dad has all ABA books we used, and I don’t remember the name(s). I know you haven’t been having good results having the psychologist contact you, but you might try calling back and asking for some recommendations on ABA materials. You might get a response, or maybe if there’s other staff in the office that’s familiar with ABA, they could point you in the right direction. You might also try asking at the school you found. They may be willing to get you started by pointing you in the right direction. I don’t know what state you live in, but you might have something similar to CT. There is a center that is an incredible place of special education knowledge called SERC, the Special Education Resource Center. It’s like a library just for special needs materials, and you can check items out so you don’t have to risk spending lots of money on materials that you don’t feel are adequate or meet your needs. Of course, you can always go out and buy the ones you feel are worthwhile after test driving them. Look for this kind of resource in your state. Here in CT, although there is a physical building you can go to, you don’t have to. You can view what they offer online and then order it. I’m sorry I couldn’t be of more direct help to you on this one. Good luck! I’m sure you’ll find what you need; there’s so much available now.

  22. randellcarr
    January 31, 2011 at 3:36 pm

    Theresa possible to hear a little about a sensory diet????

    • Theresa
      January 31, 2011 at 7:57 pm

      Randell,

      There is tons of stuff out there on sensory diets. Type it into Google & you’ll have tons of information. There’s also a bunch of books available now. I have “The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction,” by Carol Kranowitz and Lucy Jane Miller. There is now a revised edition, and a companion book to go with it that has activities for kids. Basically a sensory diet is different things that stimulate the senses to help a person stay calm and focused. If you’ve ever heard or read about Temple Grandin, or seen the movie, you know about her squeeze machine that she invented. This machine that she could get in and control would apply pressure to her body and help her calm herself. Pressure can be part of a sensory diet. That can come in the form of a strong hug (I used to use this on my son.) Other examples are jumping on a trampoline or brushing. In brushing, you can use a soft brush on the arms or legs for calming. They used a form of that in school for my son by just using light brushing with fingernails. This has developed into a mainstay of his sensory diet, and something he can do for himself if he needs it. I use it on him when he has his dental cleanings which are very stressful for him, and it helps somewhat. When we’re in a big venue like at a hockey game or something loud, he asks me to scratch his back or arm, and that helps him cope with the constant sound and activity. There are many, many more techniques to incorporate into a sensory diet, and it will vary from child to child. Definitely something worth checking out and researching.

  23. January 31, 2011 at 3:38 pm

    Aside from OT and Speech in the schools, my children also receive Applied Behavior Analysis (ABA) at home, anywhere from 8-15hrs a week. I highly recommend looking into it as it has made a world of difference with my children. But you also have to be aware that you might have to go through several ABA therapists until you find one that fits what you want for your children. I am on my second one with my most severe daughter and I have a feeling we might have to seek a new one within the year unless some changes come about. My youngest daughter is also on her second but only because the initial program manager wasn’t “up to my standards”. My oldest is just starting her ABA so we will see how that goes.

    • Anne
      February 14, 2011 at 3:31 pm

      I agree, it is so important to get the right therapist! Even if they are all doing ABA, they relate to your particular child in different ways.

  24. January 31, 2011 at 9:09 pm

    I think the most important thing to remember is that behavior is a form of communication. What is causing the behaviors is what needs to be looked at first and then the most effective therapy can be used to address it. It’s really important to rule out any sensory and medical issues; some oppositional or defiant behaviors are many times caused by the child being overwhelmed or not feeling well, i.e. dietary sensitivities. Every child is unique so no one thing will work for every child. If the behavior is not sensory or medically related, I really like the Relationship Development Intervention program (RDI – the website is http://www.rdiconnect.com). It’s a great program that addresses the core deficits of the disability & a certified RDI consultant works with parents to help them learn how to more effectively interact with their child. It’s a lot of work, but I’ve been doing it for a couple years & it’s done wonders for my relationship with my 17 year old son. And the Regional Center is paying for my consultant’s fees, which helps because it is rather expensive.

  25. marj
    January 31, 2011 at 9:32 pm

    My son is turning 8 this month (Feb) and he had gotten worse with his behavior since he started with his new class in school. They said that they’re working on his behavior but it looks like it didn’t help at all. Months before his ABA stopped, I was offered to have an in-home parent training where us as a parents will be the one who will be trained how to handle our son’s behavior. I regretfully declined it because by that time my son’s behavior was “in control” and I said that we can handle it ourselves. But when he started school with his new class, that’s where the problems began. He was not only hitting his head a lot and harder but he is also hitting others. Biting, kicking, throwing things, laying on the floor/sidewalk, and many other things that I never dreamed that would happen to my son.
    Now I still have to wait 6 weeks before I can get through the parent training. I tried the bean bag, a massage, a weighted blanket and jacket, it only helped very very little.

    • Theresa
      February 1, 2011 at 11:25 am

      Marj,

      It sounds like something in his new class might be setting this off. Maybe not, but it’s a place to start. A few months ago my son had an incident at school where he got into a physical fight with a couple of the staff & they had to put him in a protective hold. He’s over 6′ tall, so this isn’t a minor thing. But we haven’t seen this kind of extreme behavior from him in at least 4 years, so we tried to figure out what happened. The administrator, his teacher, involved staff & I talked about what happened and what my son might’ve been thinking at each point. After about 45 minutes, we finally figured out that it probably happened because he didn’t want to be late for the bus. When we finally got my son to talk about it, we found out we were right. My point is, small changes can elicit strong reactions. If this started when your son started a new class, there’s a good possibility that something about that has set off this behavior and, as Susan said, is how your son is communicating about it. I’ve mentioned a couple of times in previous posts that you need to find what precipitated the behavior. Since it’s a new class, there are lots of things that might be the cause. Does your son dislike the new teacher? (We had this problem one year and just could not get my son to accept being in that teacher’s classroom. After a couple of months of trying various tactics to overcome this, we moved him to a different classroom – which he also independently requested from the administrator – and all the problems went away.) Are there students in the new class that your son doesn’t like/get along with? Is there something about the physical room? His desk? His chair? Where his desk is in the room? The equipment in the room? The lighting? Decorations on the wall? Where he has to walk in the building to get to his class? There are all kinds of things that might be contributing to his behavior. The staff needs to note what’s going on and where he is when he starts his behaviors. Brainstorming is really beneficial in trying to narrow this down, because different people notice different things, and all together you can paint a more complete picture of what’s going on in the environment. Like I said, it’s a place to start, doesn’t cost anything, can be started immediately, and will hopefully yield some insight.

  26. Randell Carr
    February 1, 2011 at 10:48 am

    Thank You Theresa,
    I am not sure weither my son’s behavior out burst’s are sensory or not
    they always seem to happen when he dose not get what he wants. But that happens only about 10% of the time. They seem to happen more at ABA therapy with some of the therapist’s some times and not all the time. But it does seem to happen more there. He does go there 6 hours a day and changes therapist’s very regularly during the 6hour period. My son is just turned 14 years old. He is loved by everyone who comes in contact with him, even if it may be a therapist that gets her hair pulled and hit.More info would be appriciated.
    Thanks you Randell Carr

    • Theresa
      February 1, 2011 at 11:39 am

      I’m sure they do, but be sure they’re giving your son breaks. Part of my son’s ABA schedule was taking breaks for his sensory diet. It doesn’t have to be long breaks… 1 or 2 minutes. Even though it seems like the behaviors are when your son doesn’t get what he wants, it could still be a result of not being able to focus and it’s just the last straw that he’s not getting what he wants. It’s definitely worth investigating. Something else in the diet that helped my son was a weighted vest. Weight on the body is calming and allows focus. If you’ve ever had a really heavy blanket or quilt over your body, you know how comforting the weight feels. If you want to try the vest, I’d say search on the web for one. Twelve or 13 years ago I had no idea where to get one, so I made one. It worked really well until someone stole it from summer school. If you’re handy with a sewing machine and want to make one, I can describe what I did to make mine.

  27. Randell Carr
    February 1, 2011 at 12:31 pm

    Thank you Theresa, I shall try that!!!!!;-)

  28. February 1, 2011 at 1:07 pm

    I know it is controversial for some adults with Autism, but AUTISM SPEAKS has a resource center that lists all of the services near your zip code. Reading about ABA and beginning a program for yourself is a good interim measure. You may want to check with any local universities or medical programs for behavioral therapy students who might be willing to work with your child. Kudos to the parents who started their own program. If we did not live in an area with access to services (which are threatened by budget cuts), we would consider moving to get them. The difference in our son with consistent ABA and without has been enormous. Keep at it!

  29. Anne
    February 1, 2011 at 5:53 pm

    Undergradute Research students from the University of Mary Washington are seeking parents of children with autism, and professionals who may work with individuals on the autism spectrum to participate in a quick survey. Please see link below if you are interested in participating. Thank you. 


    http://www.surveygizmo.com/s3/417138/Autism-Survey

    • Theresa
      February 2, 2011 at 11:34 am

      Thanks Anne. Very interesting work, and glad to participate. I hope you get some very interesting and promising results from your study. Good Luck!

  30. Sue
    February 2, 2011 at 11:50 am

    My son is 4 will be 5 in August. We live in PA and have had a hard time getting him help he now has a TSS which helps and have been using . Hyperbaric Oxygen Theropy. This has help with learning he wouldn’t count or hold a pen. If you asked him how old he was he would tell you he didn’t know. He is doing better we are waiting on a OT. To help with hand writing. We are going to move to Cookville TN in the spring if anyone knows anyone in the area who works with Aspegers please let me know. He still has some day like he is not their at all and I am talking to myself witch is so hard to take. He will hit and wonl’t stay in his time out chair. If anyone has any advice for me please let me know. Thanks

  31. Michelle
    February 3, 2011 at 12:11 am

    I live in Columbus, Ohio. There are 5 schools here for children on the spectrum that have Applied Behavioral Analysis Programs, and the school distict gives you a choice of attending preschool at the public school district or to go to one of these other schools utilizing autism scholarship. Medicaid waiver also pays for one on one therapy at one of the schools. My son has been at one of the school’s since he was 2 (now 4) and is doing very well. I know that there are many places across the country that do not have as much as we do here. Autism speak’s website under resources is a great place to look for ABA programs in all areas of the country. I would definitely recommend ABA. My PDD-NOS and hyperactive son sits, works, and learns very well at school. I did try the diet and some other biomedical treatments but decided to stop because I really didn’t see anything happening with it, except maybe the probiotic. It did help some with diarrhea.

  32. mamagrizzly
    February 3, 2011 at 12:12 am

    My son started receiving behavioral therapy at 20 months of age. He received DIR/Floortime therapy, Speech and Occupational therapy. He was then enrolled in an Autism Preschool class after qualifying for Special Ed, still received speech and moved on to adaptive skills therapy. I went through the school receiving parent training for ABA behavior modification. I know that ABA is more available and therefore favored – especially because it is a measurable approach in tracking your child’s improvement. However, personally, I’m glad that we had a chance to use DIR/Floortime as it really opened up my son’s engagement and self-awareness and hope that it gains more popularity. I feel like that as he grows, we are able to successfully meld both approaches. It is a constant balance – with ABA we fulfill the need for measure, the scientific method in observing antecedent behaviors, replacement behavior & reinforcement and Greenspan’s DIR/Floortime model follows our own philosophy that a child thrives with a natural learning process and it encourages the child’s independence and engagement.

  33. Jamie
    February 3, 2011 at 1:58 pm

    I am new to all of this really see cuz james(my son) is actually my step son & I have only been around for 4 yrs., I need help, I don’t know where to start, he is in special ed in school, he has a speech therapist, occupational therapist, physical therapist & all that at school, but we think he needs something more than that. I need any information on additional therapy & where to go or who to call. Everyone keeps metioning in home therapy how do we get that started, PLEASE HELP ME, ha see a psyciatrist once every couple months but he has never offered me anything like that he is only worried about his meds. which by the way only seemed to work for a little bit, it seems that they are no longer working. besides I dont want to have to relie on meds for ever.

  34. Jamie
    February 3, 2011 at 2:05 pm

    I live in commerce city CO if there is anyone out there who can refer me to some therapist in home & out please let me know A.S.A.P, im at the end of my rope barley hanging on & need some advice from people who are not new to the whole autism thing. I have really just been trying anything 7 everything I can think of to get his behavior under control but I feel like Im getting nowhere!!!!!

  35. sheila handler
    February 4, 2011 at 11:05 am

    I see so many posts about ABA but none for floortime. Floortime is a wonderful method started by Dr. Stanley Greenspan. There are many books about it and it is something you can do at home once you understand the parameters.

    • Tammy
      February 4, 2011 at 5:35 pm

      Us, too! We’re part of the P.L.A.Y. Project based on Dr.Greenspan’s work. Check it out at http://www.playproject.org/ or read Dr. Greenspan’s book “Engaging Autism” or check out videos of Dr. Greenspan’s techniques on YouTube.

      We’ve seen such improvement in Kaitie that her therapists at school want training in these strategies.

  36. hollin goodwin
    February 4, 2011 at 11:06 am

    I have my 2 year old son in TEACCH one day a week for 2 hours at the TEACCH Center in Chapel Hill, NC. It has made a huge difference in his ability to follow directions, stay on task, and cope with change. He also has music therapy once a week. He’s in ST, OT, DT, and will start PT next month also. I am looking into horseback riding therapy as well. We haven’t started any dietary changes because he doesn’t really display any food allergies or casein/gluten sensitivities but will discuss with the developmental pediatrician next month when we start meeting with him as well. We are lucky that our son doesn’t really have any serious sensory issues, sleep issues, or tantrums/behavior issues.

  37. Judy
    February 4, 2011 at 11:09 am

    My son is 15, (210 pounds and nearly 6 foot tall!). Over the years we have investigated and tried most therapies that have seemed rational and safe for him. This is what we have found has worked best for him:

    1. Intensive one on one therapy using ABA. The earlier you start the better, even if it’s just you and a book at first. It should be delivered by some one trained under the supervision of a BCBA certified analyst if at all possible. VB, traditional ABA, if done well, either will help. We’ve used both, and each has it’s advantages and disadvantages. Intensive ABA has hundreds of studies to back it’s effectiveness for autism, so we decided to make that number 1.

    2. Ensure that his therapy generalizes across environments, and this means getting trained and working with your child yourself. Autism is 24 hours a day and the more consistency in programming across people and environments the better. No one is as motivated to help your child as you, and no one knows him better, it’s not hard to learn to be a decent therapist.

    3. The use of activity schedules, which is part of many ABA programs. Many of our kids have difficulty with executive planning skills (now what do I do?) the activity schedule helps him follow a sequence to complete tasks independently. My son follows a 30 minute activity schedule to undress, shower, brush teeth and dress for his day. He follows another to make his bed, pick up and carpet sweep his room. Another to make a grilled cheese sandwich, including clean up. It is a wonderful tool, and allows him independence and pride of accomplishment, and time off for me! There’s a book called “Activity Schedules for Young Children with Autism, by McClanahan I think that can get you started.

    4. Straightening out intestinal issues – he used to experience alternating constipation and explosive diarreah we used a DAN doc to get that straight, treating yeast overgrowth, gluten casein free diet, and once he was regular, the magic antidote my grandmother used every day: prunes. He knows them as “big raisins,” but they do the trick. If he gets gluten, we still have the foul diarreah about 4 hours later, so he is still Gluten casein free.

    5. Risperdal I know meds are controversial, but if your child is aggressive and behavior modification alone is not doing the trick, and this often happens around puberty especially, this can help. Be sure there is no other medical reason for the aggression first (eg. acid reflux causing pain or tooth problem) Docs will tell you Abilify and Risperdal are nearly the same, but they are not exactly the same, and for our son, Risperdal works much better, though Abilify is supposed to be safer long term. Studies have shown that the combination of Risperdal or Abilify (depending on your child) with consistent behavior modification have the best impact on aggressive behavior, when behavior modification is not working alone. You’ll know if your child needs it..if he’s grabbing for no reason, even when he’s being positively reinforced. Or if he attacks a the slightest demand or he is destroying property or hurting you, it’s time for medical assistance. Don’t just take the abuse, it can be helped.

    6. Focusing on the big picture. In the end, I think I’m going to be asked not whether I fixed him, but whether I loved him. Over the years I’ve seen parents do some really desperate and sometimes dangerous things in an effort to fix their child. I can’t judge, I’ve felt that desperation too,it’s a really tough life at times. We’ve found that keeping it positive works best. Using positive reinforcement, sometimes a little silliness, and allowing him to remain successful while learning (errorless learning techniques, creative prompting strategies), being consistent work best for him. And the result? He’s a sweetheart, a 210 pound teddy bear, with a smile that lights up a room and that makes me smile every day. I can’t imagine life without him. Wasn’t always that way, but I think it does get better over time. I know he’s changed, and we have too. Good behavioral therapy was a key component for us.

    • Julia
      February 6, 2011 at 5:48 pm

      Judy,

      I read your blog and was interested in your experiance with violent behavior. My son was on Risperdal for approximately 2 1/2 years to address aggression. We took him off of it last January due to possible side effects (Tardive Disconitia). The involuntary movements faded away and we tried other medications (not in the anti psycotic family). They are not helping with the aggression. My 9 year old son’s aggression is getting worst. He has benefited from ABA, Behavior reward programs, OT therapy,and sensory diets. While he understand what is expected of him he does not seem to be in contrtol when frustrated. The only thing we have not tried is the gluten free diet. The doctors are recommending Abilify, but I am worried about the possible side effects resurfacing. Did you have any benefits to the change in diet as it relates to aggression. Appreciate any feedback. Thank you.

  38. Patricia Bigornia
    February 4, 2011 at 11:12 am

    My son is in an in-home behaviorial program and is doing great. ABA works well for him BUT even better when is blended with FLOORTIME as well. Actually if I had to pick only one I would choose Floortime, but regional center will only pay for ABA. I think each child is different and as they grow/mature their needs also change.

    • mamagrizzly
      February 4, 2011 at 12:27 pm

      Agreed how Regional Centers favors ABA, mostly because of the record keeping and measurable improvements. I think that areas where regional centers won’t fund for DIR/Floortime approach by Greenspan – it’s a misunderstanding that it’s completely child-led (even though it stresses on a relational approach) and “informal”. Also, where we live, if you use ABA, regional center doesn’t justify the need for ST as articulation is integrated. However, unless the behaviorist is also a speech pathologist – it doesn’t make sense that through reinforcement alone they can truly offer speech as it overlooks the possibility of oral motor issues. My personal opinion is that at the stage of early intervention, the child is already delayed in development, DIR/Floortime is helpful – basing a relational approach at the child’s developmental age. In our case, it’s really fostered socio-emotional strengths in our son as we have our own philosophy that the natural learning process for young children is through play and peer interaction. As our son grew older, we did get parent training for ABA which we creatively incorporated with the DIR approach – for behaviors that required more structure. During this time, I met a few parents who used ABA exclusively since the beginning of their child’s intervention and didn’t understand why ST/OT, social skills classes or even dyads weren’t implemented in their behavioral plan. There’s another extreme – I know parents who are strongly against ABA because of the opinion that it’s entirely a “Pavlov” type approach and children respond in rote, not naturally. I wish that regional centers would be more open to understanding that there is benefit in offering all the options if incorporated and implemented correctly.

  39. February 4, 2011 at 11:15 am

    I’ve worked extensively with kids on “the Spectrum” of ADHD through Autism for the past twelve years, and I’ve found that the best results I’ve seen so far behaviorally have come from early use of the Sonrise program (and its spin-off programs) followed by a program called Brain Balance. Additionally, almost all of these children have persistent primitive reflexes which need remediation, allergies (not the least of which are gluten/casein) – usually in the form of delayed food sensitivities – and a host of other neurological development issues which need to be addressed. As Bruce Lipton, Ph.D., says “One cannot simultaneously grow and defend.” If the nervous system is in defense posture, it will limit its growth.

  40. Theresa
    February 4, 2011 at 11:16 am

    Jamie,

    A lot of what you’ve read here is not just for home, but for school also. In fact, all of the therapies are better if they’re practiced at home And school. You don’t say what the issues are with your step-son that have you at the end of your rope, so it’s hard to specifically suggest anything.

    But you already have access to people who can help you. Talk to the school therapists about your concerns. If you feel his IEP isn’t meeting his needs, call for a PPT meeting to change it. Put all your concerns on the table and don’t be shy about telling them what you think he needs. I found out very early (thankfully!!) that the school system is probably not going to offer up any more than the minimum unless you ask for it, even if the teachers/therapists think the child needs it. Of course, more services cost more money, so they’re not going to just put the money bucket in front of you and say take whatever you want. You have to advocate for your child to get it.

    If you don’t like what the dr is doing, either tell him so that it can be worked on, or change doctors. Or get an additional doctor. A psychologist will take a more therapeutic approach. But you’ll need the psychiatrist if you’re going to continue meds, because the psychologist can’t prescribe, and your primary care physician may not prescribe the meds the psychologist recommends (if any).

    If you want to start a home ABA program, the therapists or doctor may be a good place to start looking for help or direction. As suggested in earlier posts, if you need people to work with your child, you can start by looking for help from a college in your area. Many times students are looking for experience in their study fields.

    Do as much reading as you can on autism and the therapies you’ve read about here. Research and knowledge will make you a good advocate, help you focus your energies and efforts in the right places, and also offer some sanity because you’ll have more control over a part of your life that feels so out of control.

    As also suggested here, Autism Speaks has a lookup for services in your area. Definitely use it.

    I hope this helped a little. Good luck!
    Theresa

  41. Jennifer Tidd
    February 4, 2011 at 11:17 am

    We have our 4 year old autistic son in ABA therapy both 26 hours per week in a public preschool (we are fortunate our county is very advanced in the public schools treating autism) and also a therapist coming into our home from 2-4 hours per week, working on social behaviors. Our oldest, an aspie, who is now a freshman in college underwent only speech and OT all the way through schools, from pre-school-12th grade, but he is very highly functioning, much more so than our four year old. I think it is important to say here, that our family, with two on very different places on the spectrum and manifesting similar, but also very different symptoms, tried the diets, DAN, limiting milk intake and NONE of those therapies worked at all. We have found with both boys that behavioral therapy, utilizing Skinner’s behavior modification model has worked very well on both our sons. It is important to note, that there really is no empirical scientific evidence supporting DAN or the diets. If it works for your child, great, but after having two children on the spectrum, and trust me, having tried it all, I would suggest, if funds are tight, to use them all on behavioral therapy (ABA). I am a political activist for autism causes and in the 15 years since my oldest son was diagnosed, I have met few people for whom those therapies actually worked for the long haul. Further, in recently speaking with a neurologist, who also has a son on the spectrum, he was gravely concerned of adverse health affects of limiting gluten in a diet and the DAN therapy. I question the credentials of many of the people touting these miracle cures, like Jenny McCarthy and for our children, prefer to stay in the confines of what has been proven to work by empirical scientific evidence. Also, in the news of late, the doctor who started a lot of this nonsense about immunizations et al, is up on charges in the UK for fraud. There is no cure for autism, but we can help these kids to overcome many of the symptoms through behavioral therapy. I am curious as to Autism Speaks, as an organization, their stance on the alleged dietary and chemical cures, and pronouncements of cures by people like Jenny McCarthy. This Mom feels as though those folks are almost working against us and thrwarting the state efforts to pass meaningful autism insurance reform.

  42. jennifer weist
    February 4, 2011 at 11:20 am

    brushing my daughters skin helped totally but the autism school sucks in that area they don’t believe in it. so’ i do it befor scool for her.

    • Theresa
      February 4, 2011 at 11:45 am

      Jennifer,

      If you have your daughter seeing a doctor outside of school who specializes in autism and can evaluate your daughter, s/he can also write up plan for what therapies and services she needs. You can then take this to a PPT meeting and tell them this is what she needs. Even if they don’t agree and fight to not give this to you, it gives you ammunition for what you want. If they argue with you, you can tell them that a doctor specializing in autism has determined that this is what constitutes an appropriate education for your daughter. They will definitely be familiar with the term “appropriate education,” as that is what your daughter is entitled to by law- what is appropriate ***for her***. They will automatically see that this will be your evidence for what your child needs if you choose to take them to court or arbitration to get it. You don’t have to threaten to do that, because you do want a good working relationship with them, but if you use that term it will be implied that you’re willing to go that far for your daughter, and they may come around to seeing that your daughter needs therapies they’re not providing at the moment.

    • Theresa
      February 4, 2011 at 11:49 am

      Jennifer,

      Forgot to mention that you should ask the doctor about a sensory diet for your daughter (read previous posts here about sensory diets- there’s lots ;-) ). If brushing helps her, chances are good that there are other parts of a sensory diet that could help her. If s/he agrees your daughter could benefit from it, be sure it’s included in the plan you present.

  43. Joanna
    February 4, 2011 at 12:02 pm

    There are so many therapies for children with autism that are based on behavioral principles. Applied Behavior Analysis is the overarching scientific/psychological are that provides the basis for many of these. ABA, Lovaas, Pivotal Response Training, DTT (Discrete Trial Teaching), Verbal Behavior, and many other approaches incorporate behavioral principles into their programs. Even programs that are not principally behaviorally based, use ABA teaching methods to teach individual skills and to guide and shape behavior. The thing that appeals to be about behavioral therapies is that is gives me the basic tools that I need to teach a wide variety of things that can help my son and help our family.

  44. Brandy
    February 4, 2011 at 12:17 pm

    I have a 12 yr old with Autism and we are very limited here in the part of Tx I am in services for him. Anyone know of who or where I can call to get him the help he needs and deserves? He rides a bus 40 miles away from where we live just to go to school.

  45. Dodi McIntyre
    February 4, 2011 at 1:59 pm

    Though this answer isn’t quite what you are looking for, I recommend the book Common Sense Parenting. You can order it through Boys Town Press. My son is now 19 and we went through a varied number of behaviors from mild to extreme. When we applied these strategies along beside the formal interventions that were in place, we had great success in shaping our son’s behavior.

  46. Lauren
    February 4, 2011 at 4:30 pm

    If you live in an area where services aren’t available, it might be worth going to a website called Rethink Autism. They provide excellent resources including videos as examples and ways to chart results and get feedback in order to create a good ABA program at home.

  47. gloria
    February 4, 2011 at 8:35 pm

    My son is 8 years old & has ADHD as well as Aspergers Syndrome…. I have no clue what to do with him… He is on Vivance for the ADHD, but his behavior is out of control…. I am a singl emom who lives with my parents & they just feel he is a “bad kid”. I really dont know what to do, not sure what my insurance will cover, have tried some therapists but all they do is write his RX’s they dont wanna do anything else…. seems everyone just wants to pawn him off on someone else & the schools, forget it, they ar a joke, if you ask them, he is just the worst kid ever! Any input would greatly be appreictaed!!! HAPPY WEEKEND!

    • Teri Columbo
      February 7, 2011 at 1:59 pm

      Do you have medical assistance for him? If not apply for it because all chidren with autism are eligable. My son is 10 and is diagnosed with Aspergers and ADHD. I found that the medicine to help the ADHD made the emotional out bursts worse. We took him off the meds and started bio and nuero feedback. It has done wonders for our child. As for school don’t be afraid to fight. I had to take my sons school to court. They do have free advocated for children that will go into the schools with you for the IEP meetings and such. I don’t know where you live but, there is a group called ARC that supplies the free advocates in PA. If you get the medical insurance you can get wrap around services which help with his behaviors and helps you learn how to deal with them better and social skills classes for free. I learned with my son the more people yell and show meanness the more he does. I found just staying calm (though very hard sometimes) and explaining the situation and why it was wrong and how it made that person feel helps alot more then yelling, I think the minute we start yelling they shut down and that doesn help anyone. I know it is hard explaining to people that he has a problem and they don’t understand because they look normal. People are just ignorant sometimes. I had problems with my family they all said I just had to be harder on hima, all he needed was a good spanking, ect. I heard it all. No one lives in our shoes. No one knows what it takes everyday. You do and We do the best we can. For my parents and my in-law I printed out an 8 page letter called Especially for Grandparents of Children with Asperger Syndrome. The web address to get the letter is http://www.udel.edu/bkirby/asperger/grandparents.html. It is really good letter for grandparents and even other close family members. Hope it helps.

  48. Alli
    February 4, 2011 at 9:43 pm

    I have been an ABA therapist for 7yrs now. I’ve worked under BCBA, Speech pathologist and OT and know alittle about Floortime and RDI. I’ve seen amazing results using ABA to teach these children a vast amount of things put I feel I must warn some parents. Pls be very inform about your children’s therapy and that sometimes ABA alone doesn’t cover everything. If your ABA therapist doesn’t know about sensory diet, oral monitor experience, how to foster emotional connection in a natural environment,functional skills, or how to help you generalization the goals they have accomplished in therapy(these r only some examples)….there might be gasps in your child development. ABA is only great when its run under someone who knows more than just ABA.

  49. Tammy
    February 4, 2011 at 11:15 pm

    Bridget :
    Is ABA covered by insurance in Michigan… not sure what state you’re in.
    My son needs it, but it’s very expensive I hear… which is why I’ve been putting it off..
    He did start talking after 1 week of cod liver oil!
    </blockquote

    Neither ABA or Floortime/PLAY Project is covered in Michigan. Our insursance company says they "can't" cover autism therapies until the legislature establishes billing codes.

  50. Celeste
    February 5, 2011 at 8:16 am

    Aaah…Behavioral therapy. As a mom of two son on the autism spectrum and one neuro-typical daughter, the idea of behavioral therapy really frightened me. I was very apprehensive. We were offered (through consultants hired by our school district) services from certified behavior analysts something that amounted to compliance training – a “do what I say or I’ll help you program”. During the 4 months I allowed my sons to participate in this program they were miserable. It was awful. That said, I knew there must be something more. I did some research, listened to people I trusted and am now myself enrolled in a Applied Behavior Analysis (ABA) graduate program. Behavioral analysis is real, time tested science that at it’s heart is intended to better the lives of people; to teach socially significant behaviors as replacements for behaviors that are not beneficial to an individual. Like any therapy, trust your gut – if it doesn’t feel right, it probably isn’t. But keep in mind, it may just be the practitioner that’s not right, not the therapy. My sons are now happy, healthy, 7th graders who are learning to navigate their world with skills they’ve been taught using the principles of ABA.

  51. debra
    February 6, 2011 at 10:54 am

    I have a four year old son with autism, thats about all we know I live in panama city florida and the doctors here well, they stink. We have tried speech therapy. Now he is in a Pre-K class for autism children were he gets OT, Speech, and PT. No therapies seem to be working. His behaviors will increase and decrease for no apparent reason. We have tried the gluten free diet but he ended up with none stop runny poops for a month. He will do this with any diet if it is not off and on. So this is what we do for his diet now he gets 80-90% gluten free and 10% gluten it has seemed to help with the stomach issues. My son is still not potty trained and i dont know where to being. He seems scared to sit on any toliet and hates bathrooms. Baths are hard unless there are lots of bubbles. he is very perticular about how he is sitting or laying. ect. He also does not use words, He has them cause they will pop out sometimes but he doesnt use them. I would like to know what to do. It was easy but it seems as if some of the behaviors are getting worse. Any advice?

  52. anne-marie norman
    February 6, 2011 at 3:01 pm

    We have used and still have a reward system where my son’s good behavior earns him items that are important to him. He also looses privilages when he is not behaving. My son will be 15 next month and when he was first diagnosed as PDD at 29 months he was very severe. He has no lnaguage and was not interested in talking or interacting with anyone. He had a lot of self-stimulatory behaviors and would engage in self abusive behavior. We used Sensory Integration Therapy and still keep the sensory tools in the house to regulate behavior and we used a floor time approace. We were lucky to be able to get intensive early intervnetion services and at 3 yearsw old my son entered the local collaborative pre-school. He sttended out local public elementart school fo rgrades 1-5 then we were able to get him into the League School in Walpole. Our oldest graduated from the League last June and is now attending a local community college getting all A’s and B’s. She was at the League for 9 years after being expelled from the public school. My children are doing veyr well because of all the intensive therapy and the work of people who understand autism and how to teach children on the autistic spectrum. My son is able to talk and communicate with peope and he is very social. He does relate better to adults than peers his own age but he does have friends both in the neighborhood and at school where he no longer feels different.

  53. Eileen Leahy
    February 7, 2011 at 9:04 am

    My son is 26 years old and autistic. His behaviors are out of control. He bangs his head, bites his hands, stamps his feet and bangs the walls in my house. He is also 6’5″ tall and weighs 280 pounds. We have never needed any help until the last two or three years and now we cannot find any help. My son has had a lot of disapointments in the last few years and it has been very negative. I have tried as hard as I can, but I have not been very successful in helping him. We live in Pennsylvania in a suburb of Philadelphia called Media. If anyone have any advice, please let me know. Thank you. Eileen

  54. Teri Columbo
    February 7, 2011 at 11:19 am

    My son Trevor is 10 now he was diagnosed with aspergers and ADHD when he was 7. We tried medications like conserta and stratara for his ADHD these medicines made him worse emotionaly. His emotional outburst became worse. We tried reward systems, wraparound services, counsuling, social skills groups, different diets like all organic, gluten free/ caesin free diets. He ate no red or yellow dyes. This all helped but not enouph. It wasn’t till we tried Bio and Nuero Feedback with counciling that we seen real results. I would highly recommend it to any parent. He started making better decisions, staying focused and was able to learn how to calm himself before reaching the melt down level as I call it. I have seen a real improvememt in him I thank god every day that I found this place. We go to Point North Psychology group in Bethlehem, PA. They do a Brain anyalis to see how your childs brain waves work and see where they are not connecting right (Processing the information it receives) Then from this they program video games for the children to play with their brains (no remote control) they have to think and use the pathways that need help, so this strengthes those pathways. The more the play the stronger the pathways get. I love it.

  55. Joan
    February 7, 2011 at 4:52 pm

    I have a 4 yr ols boy who is getting really violent. He is autistic. We moved from western new york to Indiana big mistake. He had ABA,music therapy,an awesome sensory diet,ot,pt,speech. He is current in speech,ot,pt his school here is aweful. Ive got a calming corner for him that seems to help for now. Depends on his day. There is no support groups here only in Indianapolis which is 2 hrs away. He was going to school 5 days a wk 2 1\2 hrs a day plus home services 3 days a wk. It helped alot!!!! now that we live here there are no home services at all they can’t afford it. If anyone lives here in Indiana pls let me know where else I can get some help PLEASE thank you all

    • February 7, 2011 at 6:24 pm

      I would start by applying for Social Security Disability. Having that will entitle you to state medical insurance (we did this for Raven when he was about 3 years old) The state insurance then covered his OT, Speech, Tss and Behavior. Plus working with the agencies provided family wrap around services ( called provider 50 here in PA).

    • Barbara Pons
      February 8, 2011 at 12:51 pm

      I did some research online…. This is what I found.

      Points of Entry: A Guide to Accessing Indiana’s Services and Supports for Individuals with Disabilities is a publication produced by CPPS for individuals trying to sort out the “maze” of programs, services, and supports for persons with disabilities in Indiana.

      you can go to the website and email Stacey May for a copy of the Points of Entry or call her at 812-855-6508. Hope this helps. Maybe she can give you some ideas as to what indiana has to offer. good luck!

  56. Barbara Pons
    February 8, 2011 at 12:54 pm

    The Department of Children and Families (DCF) voluntary services helped me out the most. They had people come to my house 2x’s a week and help me work with my son who is now 10. I don’t hear many people that had this kind of help but It is here in Connecticut.

  57. Reshma
    March 31, 2011 at 7:36 pm

    I am looking for a DAN doctor in Kansas. Any suggestions/recommendations?
    Please let me know.

  58. jackie
    October 15, 2011 at 9:32 pm

    i have a two and a half year old son who is autistic.i am not receiving any services for him yet .we are waiting for an app. for him to be evaluated.this is very expensive and i am having a hard time paying for it.i am researching everything i can and trying to help him at home until i can afford to pay for professional services.i livee in kershaw s.c. and there arent many options here.he doesnt speak he does babble constantly.he has said a few words here and there.he had normal development until 14 months and i noticed he stopped trying to talk and would no longer make eye contact.he started piling his toys and running around in circles . he is affectionate.he does have tantrums when he becomes frustrated.i lost my job and my home a year ago and have no idea how i will afford care for him.any suggestions wouid be greatly appreciated

    • Barbara Pons
      October 17, 2011 at 11:10 am

      I had birth to 3 that helped me in the beginging but i don’t know what services you have in your area. I don’t know anything about SC but this is a great place to start.

  1. January 31, 2011 at 10:06 am

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