Madore Family's Autism Resource Site
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Update 7-2007: Our home program at age nine looks mostly like tutoring. He must still learn everything at home 1:1 because he can't concentrate like a regular third grader can. Things go too fast for him in his regular class. In 1st and 2nd grade he was in a regular class all day that had his main regular ed teacher and then a special ed teacher would assist with lessons and pull Andrew and a couple of others out when things became too much. He does have an aid during PE and music. It is so wonderful that Andrew's 2 main therapists that have been with him all along are still with him at least 4 days a week. We were recently approved for CLASS so when those therapies finally arrive, we will encorporate them into his program and "train them in the language of Andrew".
Update 8-2004: We are still using a home program with Andrew. He just turned six but he still needs help--time doesn't stand still. Other 6 year olds can read and write and socialize so we have to try and keep up with them. He has at least 1 session everyday after school. Therapists are here 6-7 days a week. We still do a combination approach with mostly AVB DI mixing, NET, speech practice and academics. He is reading beginner books and beginning to write spontaneous sentences about topics. He is doing addition and subtraction of single numbers and likes to draw and color (a big change). Jesse Franco from the Capital School has been great with helping us perfect his speech program. She even identified an adnoid problem that was keeping him from breathing properly and giving him a nasal tone. He is doing a second year in kinder to help him catch up with his peers--he is a summer baby so he was young for his grade anyways. We do RDI lessons to help with social skills and the NET activities help generalize things. We still have Jaye, who has worked with him for about 4 years, and Trish and Traci have been with him for about 2 1/2 years. We are lucky to have a good team. NEISD has been working with us but all parents know this is hard...we keep going and they are trying. He has a good monitoring teacher. We stay optimistic about things, but Andrew will always be different and I can respect that. He has a couple of good friends and a family who loves him. He endures a lot everyday and is very opinionated. I can respect that too. Mostly I just love him. I love him for making my life real. He tries my patience and pushes my buttons but he makes me smile and giddy with his progress. I am very lucky to have him in my life and a part of my family. Please keep him in your thoughts and prayer. Applied
Behavior Analysis (ABA) or Discrete Trial Teaching (DTT) is based on the method
used by O. Ivar Lovaas where he was able to "recover" 47% of the
autistic children in his clinic, but ABA should not be mistaken as the exact
same thing. B.F. Skinner used "operant conditioning" as far back as
1938 to help with a variety of disorders. Autism
was first named and described by Leo Kanner in 1944 as "The mysterious
disability of autism is characterized by a peculiar emotional and intellectual
detachment from other people and the common human world." ABA
teaches tasks, however small or complex, by breaking them The
best resources for setting up an ABA Program would be other families that have
set up a therapy program and of course an experienced professional/consultant if
you can find one. In the
beginning we
started with only 8-12 hours a week. We have been having a hard time even
getting that lately. I would love to have closer to 20 hours a week but that does not
seem possible at this time (2 hours in the morning, eat lunch, nap, 2 hours late
afternoon). With adding PPCD at his public school, it is hard to get in a lot of
hours. No matter what, in the evenings we do family things that keep him
focused and verbal. We did ABA with my son and it helped him A LOT! It only took us so far because my son was so bored of the repetitious things. We had to adapt or go insane. We still use the curriculum. In the beginning during his sessions, he had behavior problems that were horrible, now he does not (knock on wood). He still can be a terrible two (although he 3) out of "class" but we attribute that to the communication problems and being a 3 yr old boy (he will be 4 May 31st). When we started try to get words out my son, we made him work for everything (was hard for me at first because he would cry). At first we only required eye contact or the sign, then the first syllable, then the full word, then want ...... , then want more ....., then I want ...., then I want ..... please. We had this in October 2001 when we went to the Carbone workshop so this was not from AVB. I did not know at the time how key this was and luckily we tapped into it. So we basically picked up all his favorite things and denied access to everything he would want and then made him work for it. I remember even taking away his Buzz Lightyear and not giving it back to him until he ask for it again or said more or whatever. This was very time consuming and frustrating for all of us. I wanted him to have everything and to be happy but the other won out (the necessity for language). For pretend play I have a tea set that I keep on the table and we "work" while we are eating. Pour tea for mommy. Sister needs more tea. Can Buzz pour mommy some tea in the pink cup? Starting out basic and then getting complicated. I had to start with hand-over-hand to show him what I wanted. We use the doctor kit and take turns doing exams. Constructions kit to "pretend" to build things and to actually build things. We dress up as characters and pretend --- this is a real grey area. He can repeat parts of movies so when we dress up like Buzz and Woody I have to make him go beyond the lines from the movie (he did NOT like this in the beginning). The bean/block technique (negative reinforcer/third lever of BF Skinners book) can MAKE him participate correctly but it was hard for me to do because I don't like to be negative with him. Andrew loves counting out dollars when playing store. He did NOT want me to intrude with this one at first. He was acting out the Blues 1-2-3 Activities computer game and repeating Cash Register's lines from the Present Store. I decided this was too close to a stim after he did it the same way 10 times. So "pain in the butt" mom came and ruined it and made him give me the "blue dollars" and I would buy things. Now I will hold up an item and he will tact/label it and tell me how much it is: "That'll be 5 blue dollars please" (this is from the video but he is substituting this situation so I go with it since last summer 2001 we were lucky to get 1-2-3 word combinations together). I will count out the dollars and then he will hit the number 5 on the register and total/open drawer and re-count the money in . I repeat, this is very close to a stim activity for him but I try to use those needs and mold them into useable life moments. I pull up those phrases from movies and put them in real life. I pretend play everything I can think of: Barbies in the rooms of their house acting out and conversing with one another, car races and crashes, puppet plays, stuff animal parties, cooking and eating in the play kitchen and the real kitchen, pretend cleaning the house. I keep some things on shelves mostly because he does not play appropriately all of the time with certain things (those become selective shelf items). I tell him it is play time and give him a choice of activities (I used to have to use PECs for this but I faded those ASAP). If he is not cooperative I give him the choice of doing an activity or picking up the beans. I know this sounds mean but Skinner/AVB hit the nail on the head with this one - at least for my son. If he had his way, he would stim, play on the computer or watch the same videos all day (although his stimming is mostly gone now). He now has to get out his own bowl, fork, plate, - pour his own juice, cereal, chips - clean up etc.. This gets frustrating for me because it takes so long. It is SOOOOO much easier for me to do it. We don't use cards anymore except for initialing introducing a new word along with the object and for review in the fast AVB way. We go on field trips (last week was to the airport and was that ever an eventful time with security - 4 preschoolers holding hands and loud planes!!!). While we are out in the community we label things and talk about their features, functions and class. Don't get the wrong idea. I don't spend enough time doing this. There are too many other things to do. It is that juggling act - especially with having more than one child. Language and behavior have been the biggest hurdles. We give him choices for mostly everything. "Do you want a cookie or a cracker?" He says, "I want cracker." We make vocabulary boxes and work on about 10 new words at a time. In the box we place a picture of the object and a couple of examples of the object. When he is not in session we make sure to use these words and point out any example of this object. For example a bed. We have a picture of a bed, a Barbie bed, and a Little People's bed. The therapist will phrase the questions in many ways: "What is this?" "Hand me the bed." "Give me bed" "Point to the bed" etc.. . We then point out his bed, sister's bed, Mom & Dad's bed, and any other beds we encounter (including a trip to the mattress store). After 8 months of therapy he had over 80 words and about 15 phrases that consist of 3-6 words each plus the "I want ... " phrases. He also understands a lot more. At 1 year of therapy he had over 200 words and he speaking a lot more spontaneously. At night I will say, "Night, Night, Andrew." He says, "Nigh, Nigh, Mama." I say "I love you." He says, "I love you too, Mama." He is interchanging the correct names along with these phrases, e.g.. "Nigh, Nigh, Daddy." "I love you too, Grandma." He is even starting to shake people's hands (this is huge for us because he never liked people to touch him). Applied Verbal Behavior is helping him to conversationalize and learn to ask questions. Now at 1 1/2 years of therapy he has over 400 words, can ask a few Where and What questions and is very spontaneous. Every day is getting better but many things are still a struggle. I
use our digital camera a lot to take pictures of people, places, and things he
needs to know. We put Velcro on the back of the pictures and stick them onto a
felt board-homemade-I used a cheap blank picture canvas and then glued down the
corners of the felt I bought at the hobby shop or even better buy the material
that is used for headliners in vehicles at upholstery stores-attaching this to
part of a One of Andrew's therapists has a preschool "class" once or twice a week here. She brings 2 non-autistic girls that are Andrew's and Kristen's age and includes Andrew and Kristen. In this 2 hour class, Andrew has 3 girls to model appropriate play, social skills, and proper conduct in school settings. This has been a real bonus to our in-home program. When watching a video of this session from a few weeks ago I could not believe what he is doing. He holds hands to walk places, gets his carpet square, participates in circle time, does hand motions to songs, and so much more. Our therapist introduces a new piece to a program every week such as "learning shapes." "Today our new shape is a triangle." They then do activities during class that will help reinforce this new concept. If anyone can do something like this, I would highly suggest it. Our therapist has a way of helping Andrew want to be with and like the other kids. There is a new awareness since we have started this weekly "class." One week I was hearing a lot of crying from the "classroom" during this group sessions. After class was over, the therapist said she had added sharing to the program. Andrew does not like to share and will take toys from others if he wants them. To help with this, she sat the kids in a circle and pulled out some of Andrew's favorite toys. Each child took a toy and she set the timer. When the timer goes off, each child then passes that toy to the right. This was huge for Andrew. They were all touching his favorite toys and then he had to give up the one he had and move on to what was passed to him. This is the child that a year ago could play with the same toy for days at a time doing the same motion over and over again. We are also starting to bring in just one other NT child to work with in a different session - also good for sharing taking turns and modeling. We go to the park and and I look for a child that seems very nice and patient and make friends with that child by giving compliments. "Wow you slide great, You run so fast, etc.. If they respond warmly I introduce them to my son and try to make it a play session. Usually the parents of NT kids are sitting on a bench relaxing or talking to other parents since they don't require what our kids do. I find the children wanting of attention so this works well. One thing that really helped with Andrew's babbling was to teach him some children's songs. Many autistic children love music (especially those sing-a-long videos). So instead of repetitive sounds like "Dicka Dicka Dicka" that he went around saying all day, he would now sing "Row Row Your Boat" and other songs. A lot of his repetitive taking things off and on were helped by teaching him how to play appropriately with those toys. One of our therapists is an ex-special needs teacher who is a natural with pretend play. When I watch her, she resembles techniques of floor-time, son-rise, play therapy with a dash of ABA, into her own special therapy. Both of our in-home therapists are wonderful. One has a psychology degree and is working on her masters, the other is an ex-special ed elementary teacher, both with a lot of training in ABA, AVB, and have been working with special needs children for a while (with an emphasis on autistic children). The most important quality that they both possess is that they love Andrew and want him to achieve the most he can. They set high goals and work endlessly to overcome all of his issues. I don't get upset when I hear Andrew crying or tantruming (although I did in the beginning) because I know they are working through these hurdles and Andrew will come out better than before. Below you can look at pictures of our "classroom," "sensory room," "playroom" and field trips. When we started our program on Halloween 2000 we were in Andrew's very small bedroom with the smallest Little Tikes table and 2 very small chairs. After about 4 months we were able to redesign the house to allow more room for his therapy (his sister really liked the changes too). Now my husband and I have a small bedroom for us to live out of. Our reasoning was that we have spent A LOT of money on therapy, so let's set it up the best we can. There have been some set backs. Right now Andrew is really testing his boundaries and saying no to things. We just try to work as a team and redirect him. We have also used the AVB block/bean technique to extinguish things. We have finished the first step in toilet training and it is an interesting experience. He stays in underwear all day except when he is sleeping. He has even gone on the toilet at McDonalds!! This is only for urinating though. He still requests a diaper to "Go Poop, Please." We
also like to play games. This can be very tough for Andrew because he has to
wait for his turn, follow directions, hand-eye coordination, counting, colors,
shapes and more. We don't always follow the directions because they are not
always on our level-so be creative. My suggestion is to try to build a team of people you trust and who love your child and want the best for them. Surround yourself with positive people that can understand what you are going through. Stay focused on what you have accomplished and not how far you have to go. Take care of yourself and the others in your family during the therapy sessions because the rest of the time is pretty much devoted to your special child or children. Good Luck and check back for more ideas and links. What is AVB?
Here is some information that may help: Just some background, my son was diagnosed September 2000 (almost 28 months old) as autistic. He was awful - Non-verbal, and VERY aggressive (threw chairs at people and would physically abuse everyone – only his father stood a chance at protecting himself). He could not match or sort, for all purposes acted deaf, and did not seem to understand anything (no receptive language). Overall I was at the end of my rope. Forget bathing, brushing teeth, clipping nails, etc.. He would eat grazing and standing up because we could not get him to sit in a chair. Our life changed when we meet some great trainers (not certified therapists) that worked with behavior modification and ABA (Applied Behavior Analysis). It resembled the “Miracle Worker” movie about Helen Keller. They came in and took control. We set up a home program on October 31, 2000 with 2 therapists and only 10-16 hours a week to work one-on-one. We had a consultant to help us with the behavior problems. We were in the ECI program but that was a waste of time because Andrew so out of control all the therapist would do was run after him or defend their bodies from him. I don’t think anyone has every earned their money more than these 2 young ladies (one had a psychology degree and had been trained by some of the best ABA people in the US and the other an ex-special ed/PPCD teacher with some ABA training). By Thanksgiving he was sitting in a chair and was starting to match and sort. At Christmas 2000 he was still non-verbal but could echo “moo” when prompted. The biggest change at that time was his aggression. It was waaaay down and he no longer was hitting us (I could still see that he wanted to though). At Easter he had about 20 words and was echoing much better. We were starting to make changes about this time because he was getting bored. We tried to change things up, add in sensory things and would move the therapy around the house and to the outside. We added on to our house and made our master bedroom into the “classroom” and the living room into a sensory-motor room and the playroom into a pretend room that also housed their TV and computers. By his 3rd birthday (May 31st) he was up to 80 words and would say the word spontaneously to request something along with the phrase “I want …….please. This was a big turning point since he found the power of language. The only medical intervention we had done at this point was removing milk from his diet (began this when he was diagnosed and I believe was a huge factor in “waking him up”). This Christmas 2001 he has over 400 words-we just stopped being able to count, sentences and phrases. He has a couple of questions like “What is it?” “Where are you or Where is it?”. I mentioned in an earlier post that this Christmas in no way resembled last years when he was still aggressive and non-verbal. He opened presents like a pro, except that he got carried away and opened a couple of his sisters (boy she puts up with a lot). I digress; Andrew’s 2 therapists went to a
Mark Sundberg conference in the Winter of 2000-2001 and came back energized to
make additions to his program that were more verbal oriented.
Don’t get me wrong, the ABA techniques can bring language, but some
children may do better without the Discrete Trials of some things (eg. The use
of 10 trials). In my experience,
most ABA programs have a lot of adaptive techniques to better fit the child (if
the therapists are good). To this
day e were and still are using the curriculum from the BEHAVIOR INTERVENTION FOR YOUNG CHILDREN WITH AUTISM: A Manual for
Parents and Professionals Before watching AVB techniques (our old style), we would show a flashcard of a new word, eg. Bird. I would even have bird type objects so that my son could relate better to fake birds than a picture. We would say “This is a bird.” Then we would ask “What is this?” and would point to the bird. We would hope for an echo response. Praise. We would do this multiple times and include a point to bird with a few other cards out. AVB looks more like this (note after trying more AVB techniques we would go outside and observe birds, bird nests, visit the zoo and visit the bird section and talk about what they do, how they fly, and their attributes – feathers, etc.): Put 3 cards on the table – 2 that he knows, 1 the new word-bird. Ask him to point to one or both of the others and then ask him to point to bird. You point if he does not get it (may repeat but move quickly if it works best – especially for those that get bored). Pick up the 3 cards and ask what each one is one at a time, “What is this? He answers correctly with the old vocabulary word-dog. Repeat next old word. Now comes the new word: What is this? If no response after about 2 seconds, give them the answer – it’s a bird (there is not a “No –wrong answer or a Try Again” you give the correction or the answer {errorless learning}. Now change up the cards and add in another 2 old words and repeat the “What is it?” This time when bird comes up hopefully there is correct answer, if not, cue with the first sound “buh” and still if no word then give the correct answer (trying to get them to echo). You transfer the knowledge and then try to fade the verbal prompts. When bird is mastered make sure and mix it in later and reinforce in the next session. You also teach “Feature, function and class of objects while introducing the words, eg-“which one do you drive?” “who flies in the sky?” etc… My son’s therapist and I attended a Vince Carbone workshop on AVB where there were only 5 children and their therapist and 1 parent (the children did not actually attend-just parent and therapist). We had videos of our children in therapy and around the house. We watched videos of each child (just bits of them) and then went over the ABLLS (Assessment of Basic Language and Learning Skills) that we had done ahead of time to show where we are now. They grouped us with one other family/therapist group (that was close to our child’s level) and gave us an AVB therapist to practice techniques and answer questions. Vince Carbone said my son would be asking questions and participating in conversations soon if we used these techniques. And well, he has. I thought he was crazy and selling snake oil and probably really high on himself, but now I know he really understands language (or actually BF Skinner did). In AVB - note a “mand” is a demand/command, "tact" is a label/name, "EO" is a reinforcer, (1)-taken
from the DTT-NET yahoo list:
TEACHING YOUR CHILD TO ASK QUESTIONS TEACHING WHAT The
teacher will bring in a paper bag with things ANDREW likes inside the bag (i.e.
little toys, gummies, books).The teacher will look in the bag and say “WOW,
look at this” while keeping the bag closed.
Teacher presents a field of three or more cards and objects both mastered and
target items. Teacher
says "I want to play". TEACHING WHERE Present
ANDREW with a closed box with that has a reinforcer (candy works best) in it and
say "this is for you". While
doing an activity the teacher will abruptly end the activity with no warning and
say "come on". The necessary item will not be available or missing from its normal place. Prompt ANDREW to say “Where are my shoes?". The teacher should then say it is on the table, in the drawer, in my pocket, etc Have
ANDREW come to sit, but have no chair for him. Have
ANDREW sitting and suddenly get up and say "I'll be right back". Teacher should say “to get a gummy (or other reinforcing item) for you”. Teacher
will deliver lunch with no utensils. Teacher
will present crafts with one necessary item missing Have
ANDREW come to the table for preferred activity (e.g. Lego’s but have only one
piece on the table). TEACHING WHY Teacher
will put a chair on the table while ANDREW is engaged in another activity.
Then tell the child “Let’s go sit down.” Teacher
says "I am going outside to play". At
mealtime the teacher should put a NON-food item on ANDREW’s plate ANDREW
is doing a reinforcing activity e.g. watching TV and teacher turns it off with
no warning. Change
things in the house (hang Pooh from the fan) TEACHING HOW Teacher
will have see through jar of desired items and the child will mand for the
items. Teacher
will say “Lets go outside and play” and take child to a locked door and say
“Okay ANDREW open the door, lets go". Teacher
will present ANDREW with task e.g. (Lego’s , train set TEACHING WHICH Teacher
will set up a situation where two similar reinforcers are on the table and say
"Give me a gummy” (one is red and one is blue) Teacher
should put a reinforcer in their hand and switch it back and forth, hiding the
location. Teacher
will put out 3 containers that are the same and move then around with a
reinforcing item under them (like the shell game). Teacher
should offer the child 2 cookies and say “You can only have one”. TEACHING WHO Have
three people in the room and say "Someone has a gummy for you" (or
other desired item). Teacher
presents pictures of known people e.g. mom, dad, grandparents and unknown
professionals. Using
toys that are reinforcing to ANDREW the teacher will hide a toy character (Buzz
Light-year) behind a barrier and say "Guess who is behind here". TEACHING WHEN Place
highly desired item on the table when the child mands for it, the teacher should
say "Not right now" and prompt "When can I have it?". Give
a peer a desired reinforcer and prompt "When can I have it?" or
"When is it my turn?". Help Introduce Conversation Turn on one of your child’s videos and have the remote in hand to pause. Play the video for a while and then pause, “What is Barney doing?” give the answer “Barney is dancing.” Or just “dancing.” Push play for a couple of moments then pause again, “What is Barney doing?” if no answer give the answer or the “Du” for dancing. Continue this back and forth “conversing”. The first couple of times that I did it with my son it only lasted a couple of pauses and then he got agitated that I was stopping his video. After a couple of weeks of this he started to look forward to our conversations about Barney. We then tried it outside talking about cars, the wind, clouds, etc. We now can talk about his toys and favorite things to do. Don’t get me wrong, this is not normal conversation. He can’t just go up to people and ask “How are you doing?” “What do you think of the Cowboy’s game?” but I never dreamed that we could get this in just a couple of months!! I know many kids are not ready for this because they cannot speak or do not have echo skills but start with sign language. Over time add in the words along with the signs and then fade the signs. This is a lot harder than it sounds but so is Autism. Here is an explanation of Applied Verbal Behavior taken from www.ChristinaBurkABA.com “ In 1957 B.F. Skinner published a book
called Verbal Behavior, outlining his
analysis of VB, which describes a group of verbal operants, or functional units
of language. Skinner explained that language could be analyzed into a set of
functional units, with each type of operant serving a different function. He
coined terms that didn't exist (to separate these operants from anything
described by traditional linguistics) for these operants. Applied Verbal
Behavior (AVB) is teaching based on Skinner's analysis of verbal behavior; it is
the application of the science of verbal behavior. The primary verbal operants,
which are most often initially discussed in relation to teaching children with
autism, are echoics, mands, tacts, and intraverbals. Here I will briefly explain
the functions of these operants and how they may be taught. I also want to touch
on the establishing operation as the foundation of AVB and how it relates to
teaching language. End of quote. Funding you may want to check into: 1. School District-check with other parents in your district. If you mention that you will bring a lawsuit against the school if they do not fund your program you will often hit a brick wall and not get much in the way of services. Many parents find this not to be worth the trouble as you will not get the money for years. There have been families that have won cases. We have pushed the district to pay for "home and parent training" and since one of our therapist is a Home Trainer for that district. Because of that, we are helped with a few hours a week. Every little bit helps. 2. Medical Assistance-Some states have a MA card and will pay the wages of your therapist (not very common). We use our In-Home Family Support Services money towards some of the ABA therapy but of course it does not pay for all of it. 3.College Students and volunteers and you the parent-check with your local colleges (post a "college student-needed to work with my autistic child" sign in the speech therapy, psychology, teacher education areas). Some colleges offer course credit if they work with your child so that it would be free or inexpensive to you after training them. Family members and neighbors are great resources. As parents we probably have the most impact on our children. Even if we choose not to be a "therapist," we need to be trained for those non-therapy time. I know we work with Andrew 24-7 no matter what. 4. Grants-some companies and organizations offer grants to help pay for programs such as these. 5.Insurance-not very common especially if your therapists are not certified. 6. Tax Deductions-you will need a copy of your diagnosis and a prescription from your doctor for the amount of hours you are giving him in ABA. You will need 1099's for all therapists and a signed contract stating that they are responsible for their own taxes. You will only be able to deduct the amount that exceeds 7.5% of your gross income. Check with your accountant for all of the details. 7. Donated money from family or coworkers-instead of birthday gifts, ask that the money be given to your child for their therapy. I felt uncomfortable with this but I did suggest gifts that we could use in his therapy. If you choose to let others know your child is autistic perhaps they could contribute a little every year (your church or work). They probably give to charities anyway. There are some people well versed in setting up a fund for this-seek them out to help you. 8. We have been working with In-home Family Support Services for financial help. They are a program under the Texas Department of Human Services that provides financial assistance to families with a child who has autism/pdd, mental retardation and maybe other disabilities, I am not sure. They can give you up to $3,600's a year, depending on your income as to your co-pay, and is renewable every year. They also have a one-time grant of $3,000's if you are in dire need of something regarding medical or therapy problems. This money can be used for ABA, respite, and few other things. Even if you think you make too much, request the application and fill it out. Maybe another program may open up and you will be able to qualify under new changes. 9. The ARC can get you on special state and government assistance lists that may be of help somewhere down the line. If you don't use the ARC, find someone who can help you fill out form for these programs (SSI, CLASS, Medicaid, etc.). 10. Have your therapist apply to your school district to be a home-trainer. Then work very hard getting your special education coordinator to give your child A LOT of home-training hours and/or parent training hours. Even
if you can't get funding and you must pay for it yourself, as I do, keep great
records in case something comes up and we can be reimbursed. My therapists make
about $30 s an hour. I remember when beginning my research into autism I kept coming up with the ABA LOVAAS research. It was stressed everywhere I went that ABA was the only way to give your child a chance. There were no programs in San Antonio so we had to start one at our house. The most hours we were ever able to get were around 18. There were no schools for ABA and only one consultant in the area. I stopped sleeping - all I could think about was my son and what were we going to do?. I wish I could go back and reassure myself that my son was going to get better without those 40 hours of ABA. There are so many things to do to help your child. These things will sometimes cost money and sometimes not. Initially the only money you will probably have is out-of-pocket from credit cards (some families end up declaring bankruptcy over medical and therapy bills), home equity loans, retirement funds (we have borrowed against this since I can't fathom making it to retirement now-ha ha), loans from family members, garage sales, begging, and anything else we can think of. Get on all the waiting lists, apply to In-home Family Support for the $3,600's a year, but don't count on it soon. Once you get that available cash, find other families that have had success with their children. You can try finding a child a lot like yours and having those parents share their experiences with you (medical, tests, therapy), but our kids are sooooo different that it is hard to find someone. When and if you are working outside the home yourself, it can be very hard finding the time to watch some else's program, but it is well worth it. If you are not working outside the home, you still have many other duties including other children, support groups, school problems, etc.. that keep you from being able to do this easily. If you have to train therapists, you should go through the training yourself with them. You will become The Specialist. Make the most of every penny you send on therapy. If you are paying co-pays for speech therapists and they are not that great, take that co-pay money and spend it on behavior or language therapy that is working - or even a recreational program for your child. Now that we have done ABA, AVB, Floortime, AIT, Professional Speech and Occupational Therapy, Sensory Integration, ECI, PPCD, Inclusion Pre-School and a ton of medical tests and interventions, I can see things more clearly. I need to provide what Andrew needs, not what LOVAAS, Greenspan, Kauffman, Sundberg/Carbone, and all those other people say my son needs. I need to take the best of them, try it and use what works. Use a developmental chart to see where your child should be and find ways of helping them to get closer to age appropriate (I have the Brigance Developmental Guidelines and have placed them in the Files under “Brigance Developmental Chart). This may mean buying the other Catherine Maurice book "Teaching Young Children With Autism" and starting with their curriculum-sitting in a chair, matching, echoing. It may mean buying a Blue’s Clue’s Puppet and getting on the floor and trying to teach your child to make eye contact with Blue. It may mean driving 30 minutes for therapy (which is a pain) or opening your home to therapists (which is harder than you may think). The objective is to help your child overcome as many of the “problems” that autism inflicts, but to also help your child reach a point where they can be happy. I see so many families home schooling because of that (and I greatly admire those parents). Just for FYI, and I think I have posted this before but we do have new members from time-to-time, here is the study done by the Wisconsin Early Autism Project that did a study trying to replicate Lovaas’ study but with 2 other study groups (1 clinic 40 hour Lovaas style, 2 parent home program, 3 school-based only). The web address is: http://www.wiautism.com/prelimin.htm They found that very involved parents with a home program of less than 40 hours could give as much of an increase in normal IQ as the 40 hour a week Lovaas clinic style. Here are a couple of excerpts: “Clinic Directed versus Parent Directed Of the 24 children, 22 were matched pairs within our sample. The other two children were matched with children from other replication sites. Although it was anticipated that if given the choice parents would elect to offer a relatively low number of hours, upon being advised that children in Dr. Lovaas' 1987 study had received an average of 40 hours per week of therapy, many parents in the Parent Directed group chose to provide higher numbers of hours. Looking just at out eleven pairs of children, the hours of treatment averaged 39 per week for Clinic Directed children, and 29 per week for Parent Directed children. These figures do not include hours of therapy provided by parents which were substantial in some cases. Pre-treatment and first year scores are presented in Table 3. As can be seen, there was difference of four points in IQ at post treatment that favored the Parent Directed group.” “In addition to having a higher pre-treatment non-verbal IQ, there may have been another reason the Parent Directed children did so well. In some cases there was a difference in how involved parents were in two groups. In the Parent Directed group, some parents became very involved, became quite skilled therapists, supervised their teams extensively, and carried out treatment and generalization activities many hours beyond the officially recorded time in therapy. Parent Directed families with other children often involved them as informal therapists. When asked to estimate the number of hours the family had provided outside those provided by the program, most were unable to do so, saying such things as "It was all the time. We had the other kids doing it too. When he was on the toilet, I was rehearsing maintenance items". It is not because of this study that I feel the “down” time (out of therapy) is so important, but because I saw it with my own son. I could get more eye contact and language out of him than anyone else (not in the beginning though – I was just trying to survive every day). I controlled dinnertime, juice needs, toy distribution, food choices and such. I could take those needs and desires he had and give him incentives to get them. I guess I made my son “work” for everything he wanted. You want some juice, then look at me, give me the sign, show me the PEC, echo the first sound, ANYTHING to start. You thought bath time was for bathing – HA – we are working on language, signing, eye contact, songs and body parts. Autism took away my power, but I realized that I had my own powers to combat things. I know a lot of parents that received NO training but naturally did this with their children. Autism was waaaaay out of my league so I needed training and lots of reading and practice. A parent’s will is incredible. Finding those resources for training and teaching you skills can make things so much easier for you and make them happen so much faster. If you are investing in your son’s therapy, allocate money to help you become the expert and give you power and control. As I mentioned, other parents are the best resource for this because they usually will pass on techniques and hints for free and those tips are truly applicable skills – not like some of those “workshops” given by people that don’t know what living with autism is like. Please don’t forget the medical part. Invest money into good tests. We need to come up with a FILE on tests that parents suggest and specific labs for them. Find a good doctor that is knowledgeable about autism and that does not always mean they have to be DAN doctors. I have two GREAT doctors and neither one is a DAN doctor because they don’t necessarily agree with everything that DAN recommends. We are making FILES on doctors too. Sometimes there are simple solutions to problems – serotonin levels might be off, zinc deficiency, yeast overgrowth, food sensitivities, etc… . Sometimes, of course, the answers are not so easy or simple – heavy metal poisoning, spikes on EEGs or seizures, diabetes, etc… . Hope this helps a little. I know what you really need is to win a million dollars or better yet, have a cure for your child. All this other stuff is hard. Good luck!! ABA/VB
e-groups The
ME list database: Consulting
Behavior Analyst (AVB specialization) Association
for Behavior Analysis Dr.
Vincent Carbone's Verbal Behavior Website
RSaffran's
Web Site -very good page for anything dealing with Autism John Wobus' Homepage Wisconsin
Early Autism Project The
Lovaas Institute for Early Intervention Behavior
Analysis & Therapy, Inc. Preparation
Classes & Supervision for the New
School for the Learning Sciences Autism
and ABA Resources Empowerment
Zone Evie's
Web Page from the UK Gary
S. Mayerson Sponsored Site-law information to help parents get funding. Wrights
Law on Special Education Autism Treatment info Ten
Common Roadblocks When Beginning a Home Program ABA
Internet Course Department of Behavior Analysis, University of North Texas TxABA
website for workshop and ABA Trainers Group information: Florida
Association for Behavior Analysis- Home of behavior analysts in the Sunshine
State.
HELP WITH ACTIVITIES AND LESSONS ARTS & CRAFTS KinderArt Michael's The
Mailbox Hands
on Crafts for Kids Makingfriends.com The
Mining Company Crafts for Kids Arts
and Craft Projects for Preschoolers Wendy's
World of Crafts Funroom.com
Crafts for Kids Kinderplanet
Crafts Makestuff.com Camp
Crafts MakingfriendsPrintables Crayola
Craft Central The
Internet Craft Fair Pack-o-Fun
Free Projects GuideZone
Crafts Hobby
Lobby Project Sheets Craftpals
Crafts for Kids Jim Speirs' Scouting Page Squigly's
Arts & Crafts for Kids DLTK's
Printable Crafts for Kids Bozo's
Crafts Bizarre
Stuff You can Make in Your Kitchen Craftpage
kid's craft links Toddler
Crafts Art
Links for Kids KinderCrafts
- Enchanted Learning Software Pleasant
Surprizes Crafts Craftnetvillage.com
- Project Library - Kids Crafts Danielle's
Place Eileen's
Camp Crafts and Other Fun Things The
Mining Company Special Days Crafts Azfamily
crafts for kids ChildFun.com Fun
For Kids by Jen The
Open Directory Preschool Arts and Crafts Family.Com
Craft Finder Earlychildhood.com
- Arts & Crafts Home
Arts: Rainy Day Projects Kinder
Planet Kids
Domain Crafts GusTown:
Craft Corner ParentTime
- Project Planner Kids
CRAFT - The Ultimate Kids Resource Hafta
Craft Arts and Crafts Links Donna's
Day Home Page Yahooligan's
Annotated Craft Links MUSIC Fifty
Songs every child should know Music
and Movement Nursery
Rhymes Musical
Museum Mother
Goose GAMES ATT
Research Demo Games
Kids Play Games
for Ages 7 and 8 Games
for Ages 5 and 6 Noncompetitive
Games Group
Games Circle
Time Magazine Activities Creative
Creations Web Site Activities RECIPES The
Idea Box Craft Recipes Dido's
Play Dough and Craft Recipes The
Mining Company's Craft Recipes Wendy's
Craft Recipes Family.com
Clay Time Salt
Dough from A to Z Craft
Recipes by Ellen Davis Scouting
Craft Recipes Kids
Craft Recipe Factory The
Kinderart Kitchen Tactile
Media Recipes Bubble
Girl's Recipe Page Secret
Solutions - Bubble-Mania! KIDS COOKING The
Idea Box Recipes Galaxy
cooking with Kids Jell-O
Kids' Cooking Fun
with Fruit and Vegetables SOAR's
Kid's Recipes Recipes
for Preschoolers Easy
Recipes for Kids Whirlpool
Really Cooking Kids Recipes Father's
World: Dads and Kids Cooking Together Kowalskis
Kid's Section Kid's
Kings of the Kitchen Family
Food Zone: Kids Cooking Tips Kid's
Cooking Club Cooking
With Kids for Dummies Kitchen
Kids Links Roll
the Can Ice Cream DEAF
WORLD SIGN LANGUAGE INSTRUCTION DIFFERENT
ROADS TO LEARNING MELINDA
SMITH'S WEB PAGE BEYOND
AUTISM ABOUT.COM Circle
Time PROGRAMS
More Than Words - The Hanen Program for Parents of Interview
with parent of a toddler with autism Parent
testimonials (long) A
chance to be heard There
is Hope Intensive
therapy...Louise Donna's
Story Reagan Fairfax
County, Virginia Autism Program Counting
the Cost of Autism (Hamilton, Ontario) Intensive
therapy... (Seattle, WA) Letters
of Support for Bradley Murphy Tommy
(Anchorage, Alaska) Maxie
(Naples, Florida) Early
help... (Vancouver, BC) Early
Intervention... (Torrance, California) The
Virginian-Pilot and The Ledger-Star, Norfolk, VA Treatment
triumph in treating autism (Australia) ABC
News Nightline Hannah's
Story (documentary film) Recovered
kids (a mail group) New
York State Department of Health Clinical Practice Guideline The
Childhood Learning Center includes ABA curriculum, Behavior
analysis at Athabasca University Great
Ideas for Teaching Lingui-Systems Mayer-Johnson
Inc. Pyramid
Educational Consultants Silver
Lining Multimedia Discrete
Trial Trainer FEAT
has a collection of teaching programs on-line Flash! Gaining
Face teaches recognition of emotions and facial expressions Labeling
Tutor Progressive
Academic Learning System ABBY
for Windows Log
It! Spedfile Beyond
Autism Laureate
Learning Systems DTT
Trainer Different
Roads to Learning ABOUT.COM Circle
Time Photo
CD Site-must purchase CD The
Idea Box Crayola
Web Site
Creative
Creations Family.com
Web Site COLORING WEB SITES http://www.execpc.com/~byb/paint.html BEHAVIOR
INTERVENTION FOR YOUNG CHILDREN WITH AUTISM: A Manual for Parents and
Professionals (This is what we use for our
curriculum). TEACHING
DEVELOPMENTALLY DISABLED CHILDREN: The ME Book LET ME HEAR YOUR VOICE.The reader may also be helped by reading a book written by a mother of an autistic child: Maurice, Catherine. Alfred A. Knopf, publisher, New York: 1993. FACING AUTISM: Giving Parents Reasons For Hope And Guidance For Help: Hamiliton, Lynn M., WaterBrook publisher, Colorado: 2000. AUTISM
& PERVASIVE DEVELOPMENTAL DISORDER: A Mother's Story of Research &
Recovery ASPERGER SYNDROME AND DIFFICULT MOMENTS: Practical Solutions for Tantrums, Rage, and Meltdowns by Brenda Smith Myles, Jack Southwick (Paperback - June 1999). TEACHING CHILDREN WITH AUTISM: Strategies to Enhance Communication and Socialization by Kathleen Ann Quill (Paperback). RIGHT FROM THE START: INTENSIVE INTERVENTION FOR CHILDREN WITH AUTISM by Mary Jane Weiss, Ph.D., and Sandra Harris, Ph.D., both from the Rutgers University Center for Applied Psychology. (1998, Woodbine Press) A WORK IN PROGRESS: BEHAVIOR MANAGEMENT STRATEGIES & A CURRICULUM FOR INTENSIVE BEHAVIORAL TREATMENT OF AUTISM by Ron Leaf, John McEachin, and Jaisom D. Harsh. (1999, DRL Books) ACTIVITY SCHEDULES FOR CHILDREN WITH AUTISM: TEACHING INDEPENDENT BEHAVIOR by Lynn E. McClannahan, Ph.D., and Patricia J. Krantz, Ph.D. (Woodbine House, 1999). TEACH ME LANGUAGE: A LANGUAGE MANUAL FOR CHILDREN WITH AUTISM, ASPERGER'S SYNDROME AND RELATED DEVELOPMENTAL DISORDERS by Sabrina Freeman, Ph.D., and Lorelei Dake, B.A. (British Columbia, Canada: 1996, SKF Books) SKF Books, 20641 46th Avenue, Langley, B.C., Canada V3A 3H8. WHOLE CHILD, WHOLE PARENT by Polly Berrien Berends (New York: 1983, Harper & Row). Not a book on Autism but is a good book for parenting. ARTICLES: The 1987 Study: "Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children," O.I. Lovaas, Journal of Consulting and Clinical Psychology #55 (1987), pg.s 3-9. · The 1993 Follow-up: "Long-term Outcome for Children with Autism Who Received Early Intensive Behavioral Treatment," J. McEachin, T. Smith & O.I. Lovaas, American Journal on Mental Retardation #4 (1993), pg.s 359-372. "Criteria for Appropriate Treatments," a letter by Dr. Lovaas that "is intended to address the question of what constitutes an appropriate therapeutic intervention for a child diagnosed with autism." The document is dated 4/6/95 and is available from the UCLA Department of Psychology, Box 951563, Los Angeles, CA 90095-1563. "Case Study: Deterioration, Autism, and Recovery in Two Siblings," R. Perry, I. Cohen & R. DeCarlo, (1995). Journal of the American Academy of Child and Adolescent Psychiatry, 34, pgs. 232-237. "Interview with Ivar Lovaas," Autism Society of America, Advocate #26, (1994) pgs. 13-15. "Special Treatment Aids Autistic Children," Maine Sunday Telegram, 12/17/95, pg. 14B. "Intense Therapy Shows Signs of Helping Autistic Children," Washington Post, 1/24/95, Sec. WH, pg. 10. "The Murdoch Early Intervention Program After 2 Years," J.S. Birnbrauer & D.J. Leach (1993). Behavior Change #10, pgs. 63-74. "Autism: A New Behavioral Treatment," by Ivar Lovaas, Ph.D., Harvard Medical School Mental Health Letter, June, 1989. The Autism Research Institute publishes a quarterly newsletter and many information packs. ARI's director is Bernard Rimland, Ph.D. Autism Research Institute 4182 Adams Avenue San Diego, CA 92116. CLASSROOM
SENSORY
ROOM/GYM
PLAYROOM
FIELD
TRIPS
STARTING
POINTS ABA
Providers United
States The
May Institute The
New England Center for Children Families
for Effective Autism Treatment of Early
Children Autism Program Alpine
Learning Group Douglas
Developmental Disabilities Center Douglas
Outreach Eden
Family of Services Center
for Autism and Related Disorders Building
Blocks Children's Group Project
PACE, Inc. The
Childhood Learning Center Autism
Research Center, S.C. Texas
Young Autism Project Terri
Locke Busy
Bodies Center
for Autism and Related Disorders Northwest
Young Autism Project Autism
and Behavioral Consultants HELP WITH TRAINING OR PROGRAMS: The
Young Autism Project at UCLA The
Early Childhood Intervention Center, Inc. Rutgers
Center for Applied Psychology Ivar
O. Lovaas Center
for Autism and Related Disorders, CARD. Behavioral
Intervention Associates (B.I.A.) Project
PACE in Beaverton, Oregon The
Wisconsin Early Autism Project (WEAP) provides in-home workshops around the
United States. They are also a Innovative
Developments for Educational Achievement, Inc. (IDEA) The
May Center for Early Childhood Education NECA Autism
Partnership Valley
Mountain Regional Center Alta
California Regional Center Wisconsin
Early Autism Project Eric
Hamlin Dr.
Patty Matesky Dr.
Carryl Navalta Tristram
Smith, Ph.D. Dr.
John Mc.Eachin Greg Buch, Ph.D. Doreen
GranPeesheh, PhD. Keli
Larson, M.A. The
Center for Applied Psychology ABC,
Applied Behavior Consultants Terri
Locke Partners
In Therapy, Inc. Sandra
J. Rowan, M.A. Ethel
W. Hetrick, Ph.D. (Director) COMPUTER SOFTWARE Free
Software Downloads Laureate
Learning Systems DTT
Trainer Fast ForWord by Scientific Learning This program, targeted at improving language and auditory systems, has been documented by this company as an appropriate tool for children with autism. Their premise is that "A child who does not recognize and process word sounds accurately will not be able to make the right associations between letter representations and spoken language." Check with them to find someone (can only be purchased/used with an approved therapist) in our area that uses this software. Mayer-Johnson-Boardmaker
and Augmentative Communication Earobics Don
Johnston Solutions for Students with Disabilities Soft
Touch Software for Disabilities Crick
Software Slater
Software Blue's
Clues Reader
Rabbit Series Jump Start
Series Living
Books Series Wimzie's
House-Play Along with Wimzie Sesame
Street VIDEOS
& DVD Barney Blue's
Clues Sesame
Street Disney Bear In The
Big Blue House FP Barnyard
Bingo The "How to
be Good" Series by Joy Berry - Grolier. Our favorite ones were, "No David", by David Shannon. David is a boy who does not listen well and gets into trouble but his mother still loves him in the end. There are other books about this little trouble maker boy. I like the one of him at school. David does look a little scary so that may be aversive to some children (his teeth are a little pointed). "Feelings" and "Manners" by Aliki. The "Feelings" book presents different feelings children have. The "Manners" book highlights good/bad manners. "We Share Everything" by Robert Munsch (author of "Lover You Forever"). A cute story about sharing at school. "When Sophie Gets Angry-Really, Really Angry" by Molly Bang. Follow along with Sophie and how her anger affects her. "Big Bird Can Share" by Dina Anastasio. Big Bird goes around Sesame Street and deals with problems with having to share. "Grover's Guide to Good Manners" by Constance Allen. Grover demonstrates what good manners are and when you should use them. "Grover Learns to Read" by Dan Elliott. Grover touches on a lot of issues that are similar to a child beginning to read. "Ernie Gets Lost" by Liza Alexander. This book emphasizes the importance of staying close to an adult while out in public. Ernie loses Maria when they go to a big department and he is very scared. "Special People" from Child's Play. Features community workers and why they are special. "Cookie's Week", by Cindy Ward & Tomie dePaola. A fun book that helps your child learn the days of the week. "What Color Am I?" by Loyal Nye. Touches on the colors God chose for things and points out that we are not truly black, white, or yellow. CHILDREN'S STORYBOOKS WITH AUTISTIC-LIKE CHARACTERS These books may be good to read to other children that may not understand why your child with Autism/PDD may “act” a little different. May be helpful to siblings, cousins, children that your child may interact with during inclusion time, or playmates that don’t understand your child. & Andy and His Yellow Frisbee by Mary Thompson (Illustrator) * & Asperger's Huh? A Child's Perspectiveby Rosina G. Schnurr, John Strachan & Blue Bottle Mystery : An Asperger's Adventure by Kathy Hoopmann (a sequel is coming out soon) & Captain Tommy by Abby W. Messner, Kim Harris Belliveau (Illustrator) & Ian's Walk : A Story About Autism by Laurie Lears * & Joey and Sam: 'A Heartwarming Storybook About Autism, a Family, & a Brother's Love' by Illana Katz & Little Rainman by R. Wayne Gilpin (Editor), Karen L. Simmons & My Brother Sammy by Becky Edwards, David Armitage* & Russell Is Extra Special : A Book About Autism for Children by Charles A., III Amenta * & This Is Asperger Syndrome by Elisa Gagnon, Brenda Smith Myles & Trevor, Trevor by Diane Twachtman-Cullen (found at www.starfishpress.com & What’s Wrong with Timmy? by Maria Shriver, Sandra Speidel (Illustrator) * *San Antonio Public Library carries these books (mainly the Central location).http://www.saplweb.sat.lib.tx.us/ or http://www.sanantonio.gov/library/ 600 Soledad · San Antonio, TX 78205 · PH (210) 207-2500 Many of these books can be found at www.amazon.com or www.half.com or www.bn.com
MADORE FAMILY'S AUTISM RESOURCE SITE: AUTISM
OUR STORY RESOURCES
LINKS TEXAS
HELP HOME PROGRAM
RECOVERY
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