Floor Time Basics

I attended an eight part training for Floor Time that was attended by other parents, service coordinators and therapists. We learned the terminology, observed videotapes of sessions with children in various phases of Floor Time, participated in play sessions and made our own videotapes for presenting to the group.

Even though a few years back we had a Floor Time assessment from another agency, I honestly did not really comprehend what Floor Time was. I was under the impression that you play on the floor with the child following their lead.

Floor Time can be done at any time of the day in any type of situation. There were examples given in the class of using it while taking a child to school and making conversation in the car. Twenty minutes is all you need to have a successful Floor Time session with your child. Many families have the siblings take part in some or all of the sessions with Therapists.

Some agencies have Floor Time sessions at their location with the option of several rooms including a gym setting. Other organizations prefer to have the Therapists come to your home or even the child's school.

An assessment can take place in one or two parts. One being at the home or the agency with an observation and parent interview with the second part being the school observation and input from teacher or aide. This is what happened with the first assessment Matthew had elsewhere. I was not too happy with the feedback the teacher and aide gave. Pros and Cons of Assessments covers the first Floor Time assessment outcome.

DIR Model means = Developmental, Individual Difference, Relationship-based approach. There are six developmental levels. These stages are:

1. Self-regulation and interest in the world (3+ months)

2. Forming relationships, attachment and engagement (intimacy) (5+ months)

3. Two-Way Communication (9+ months)

4. Complex Communication (12-18+ months)

5. Emotional Ideas (24-30+ months)

6. Emotional Thinking (34+ months)

For the last two sessions when the participants showed their video presentations we had a handout to check off which levels the child had achieved. These forms were given to each presenter to keep.

In your Floor Time Assessment the milestones achieved thus far should be listed with explanations. Children can be at different levels at various times of the day, and they can change week to week in therapy sessions. A child could also have partial achievement in one milestone, depending on certain issues that take place where the child may need help in self regulating.

Circles of communication start at the two way communication level with the opening and closing of these dialogue circles. This is possible for children who are nonverbal. A smile and eye contact can open or close a circle of communication. There may even be a goal for how many circles of communication the child can reach in a session.

The intimacy stage is being able to engage with other people in relationships. How does the child get along with siblings, relatives, classmates, therapists, etc.

Some of the following are examples in the observation chart we were given to check off the current rating (always, sometimes, never present or loses ability under stress) and age mastered for the six levels. There was also a sensory-motor profile for tactile (sense of touch), auditory (hearing)sensation, olfactory sensation (sense of smell), visual sensation (seeing), gustoatory sensation (sense of taste), vestibular sensation (sense of balance), muscle tone (strength and balance), coordination and reflex integration.

Self Regulation - recovers from distress within 20 minutes with help from you

Intimacy - protests and grows angry when frustrated

Two-way communication - responds to your gestures

Complex communication - uses imitation to deal with and recover from stress

Emotional Ideas - multiple gestures in a row

Emotional Thinking - uses pretend play that has a logical sequence of ideas

Tactile - seems irritable when held, prefers certain textures

Auditory - puts hands over ears in noisy settings, likes to make loud noises

Olfactory - reacts defensively to smell, ignores noxious odors

Visual - appear to turn away from bright light, discriminating colors

Gustoatory - eats non edible foods (PICA), all food tastes the same

Vestibular - seems fearful in space, likes to swing, enjoys being tossed in air

Muscle Tone - Seems active or restless, tires easily, prefers to lie on floor

Coordination - accident prone, bruises easily, consistent hand dominance

Reflex - slow to walk or sit, irritable in infancy, isolating head movements

Based on my presentation many of the forms mentioned that Matthew partially mastered the first two levels. His Floor Time Assessment states the same thing. Individual Differences covers the ways a child takes in the world in sights, sounds and touch. The nine senses mentioned are found in this part of the DIR component.

My notes mentioned a great way to understand the difference between hypo and hyper. The hyper does not need more stimulation, the hypo responsive needs more stimulation. A child that has been over stimulated by swinging on the swing might get sick. This happened to Matthew a few times at his OT sessions where I saw it coming, but the Therapist had no clue she was over doing it.

A hint I made note of for two of the milestones - 5 is the Emotional Ideas, creative use of ideas. This means children that can think outside of the box. For 6 in Emotional Thinking this is those kids who can answer the why questions in detail and have higher levels of abstract thinking.

In stage 4 a child should be able to attend 30-40 circles of communication. Circles are counted per activity and not per time. A child will have more emotions at stage 4 with complex circles. They can do symbolic play

Some tips for Floor Time for parents to make note of before applying techniques with your child - be at eye level, notice the same things your child is viewing, become animated (high affect), become a fun play partner, face the child and become part of the object the child is engaged with.

Matthew likes to lie on the bed under a blanket and shake legs on the bed. I make a game of like Simon Says and we start and stop stomping our legs in tune and he laughs a lot during this. He looks at me and smiles, opening circles of communication.

I sing songs in the car on the way to school and use his name in many of them. I say things like Yo Yo Mattie-O and repeat it several times. Matty is a silly boy, do da do da day hey! I use the high affect to keep his attention going and make the journey to school a pleasant one.

A child can take your hand and lead you to something they want and this is considered opening a circle of communication. Giving a hug or kiss is a circle of communication. If the child turns away from the conversation they have closed the circle.

The idea is to expand on what dialogue you may already have with the child and open up the lines of communication. Instead of asking how was school, get specific in your discussion. The key is to be persistent, show an interest in what they are dealing with or playing with. Explore feelings and encourage original thinking.

Floor Time can be music based or even OT based, depending on the needs of the child. The supervisor for Matthew will be an OT with the addition of Music at times per my request.

One of the handouts included a paper - Am I A Good Floor Timer? The questions to ponder are:

Do I observe the behavior, language, and gestures of the child?

Do I observe the style of relating?

Do I approach the child slowly, with respect and thoughtfulness?

How often do I let the child take the lead?

Do I let the child know through gestures, emotional tone and facial expressions that I am there for her?

Do I know when to be verbally responsive, and when it's better to quietly share a child's emotion?

Another issue that was brought up was for motor based challenges. The term crossing the mid-line was not something I had heard before. Topics in Occupational Therapy explains this phrase - " Crossing the midline, which relies on good bilateral coordination, means using part of one side of the body in the space of the other part. Some examples of crossing the midline include sitting cross-legged on the floor or drawing a horizontal line from one side of the paper to the other without switching the pencil to the other hand."I attended an eight part training for Floor Time that was attended by other parents, service coordinators and therapists. We learned the terminology, observed videotapes of sessions with children in various phases of Floor Time, participated in play sessions and made our own videotapes for presentating to the group.

Even though a few years back we had a Floor Time assessment from another agency, I honestly did not really comprehend what Floor Time was. I was under the impression that you play on the floor with the child following their lead.

Floor Time can be done at any time of the day in any type of situation. There were examples given in the class of using it while taking a child to school and making conversation in the car. Twenty minutes is all you need to have a successful Floor Time session with your child. Many families have the siblings take part in some or all of the sessions with Therapists.

Some agencies have Floor Time sessions at their location with the option of several rooms including a gym setting. Other organizations prefer to have the Therapists come to your home or even the child's school.

An assessment can take place in one or two parts. One being at the home or the agency with an observation and parent interview with the second part being the school observation and input from teacher or aide. This is what happened with the first assessment Matthew had elsewhere. I was not too happy with the feedback the teacher and aide gave. Pros and Cons of Assessments covers the first Floor Time assessment outcome.

DIR Model means = Developmental, Individual Difference, Relationship-based approach. There are six developmental levels. These stages are:

1. Self-regulation and interest in the world (3+ months)

2. Forming relationships, attachment and engagement (intimacy) (5+ months)

3. Two-Way Communication (9+ months) 4. Complex Communication (12-18+ months) 5. Emotional Ideas (24-30+ months) 6. Emotional Thinking (34+ months) For the last two sessions when the participants showed their video presentations we had a handout to check off which levels the child had achieved. These forms were given to each presenter to keep. In your Floor Time Assessment the milestones achieved thus far should be listed with explanations. Children can be at different levels at various times of the day, and they can change week to week in therapy sessions. A child could also have partial achievement in one milestone, depending on certain issues that take place where the child may need help in self regulating. Circles of communication start at the two way communication level with the opening and closing of these dialogue circles. This is possible for children who are nonverbal. A smile and eye contact can open or close a circle of communication. There may even be a goal for how many circles of communication the child can reach in a session. The intimacy stage is being able to engage with other people in relationships. How does the child get along with siblings, relatives, classmates, therapists, etc. Some of the following are examples in the observation chart we were given to check off the current rating (always, sometimes, never present or loses ability under stress) and age mastered for the six levels. There was also a sensory-motor profile for tactile (sense of touch), auditory (hearing)sensation, olfactory sensation (sense of smell), visual sensation (seeing), gustoatory sensation (sense of taste), vestibular sensation (sense of balance), muscle tone (strength and balance), coordination and reflex integration. Self Regulation - recovers from distress within 20 minutes with help from you Intimacy - protests and grows angry when frustrated Two-way communication - responds to your gestures Complex communication - uses imitation to deal with and recover from stress Emotional Ideas - multiple gestures in a row Emotional Thinking - uses pretend play that has a logical sequence of ideas Tactile - seems irritable when held, prefers certain textures Auditory - puts hands over ears in noisy settings, likes to make loud noises Olfactory - reacts defensively to smell, ignores noxious odors Visual - appear to turn away from bright light, discriminating colors Gustoatory - eats non edible foods (PICA), all food tastes the same Vestibular - seems fearful in space, likes to swing, enjoys being tossed in air Muscle Tone - Seems active or restless, tires easily, prefers to lie on floor Coordination - accident prone, bruises easily, consistent hand dominance Reflex - slow to walk or sit, irritable in infancy, isolating head movements Based on my presentation many of the forms mentioned that Matthew partially mastered the first two levels. His Floor Time Assessment states the same thing. Individual Differences covers the ways a child takes in the world in sights, sounds and touch. The nine senses mentioned are found in this part of the DIR component. My notes mentioned a great way to understand the difference between hypo and hyper. The hyper does not need more stimulation, the hypo responsive needs more stimulation. A child that has been over stimulated by swinging on the swing might get sick. This happened to Matthew a few times at his OT sessions where I saw it coming, but the Therapist had no clue she was over doing it. A hint I made note of for two of the milestones - 5 is the Emotional Ideas, creative use of ideas. This means children that can think outside of the box. For 6 in Emotional Thinking this is those kids who can answer the why questions in detail and have higger levels of abstract thinking. In stage 4 a child should be able to attend 30-40 circles of communication. Circles are conted per activity and not per time. A child will have more emotions at stage 4 with complex circles. They can do symbolic play Some tips for Floor Time for parents to make note of before applying techniques with your child - be at eye level, notice the same things your child is viewing, become animated (high affect), become a fun play partner, face the child and become part of the object the chld is engaged with. Matthew likes to lie on the bed under a blanket and shake legs on the bed. I make a game of like Simon Says and we start and stop stomping our legs in tune and he laughs a lot during this. He looks at me and smiles, opening circles of communication. I sing songs in the car on the way to school and use his name in many of them. I say things like Yo Yo Mattie-O and repeat it several times. Matty is a silly boy, do da do da day hey! I use the high affect to keep his attention going and make the journey to school a pleasant one. A child can take your hand and lead you to something they want and this is considered opening a circle of communication. Giving a hug or kiss is a circle of communication. If the child turns away from the conversation they have closed the circle. The idea is to expand on what dialogue you may already have with the child and open up the lines of communication. Instead of asking how was school, get specific in your discussion. The key is to be persistent, show an interest in what they are dealing with or playing with. Explore feelings and encourage original thinking. Floor Time can be music based or even OT based, depending on the needs of the child. The supervisor for Matthew will be an OT with the addition of Music at times per my request. One of the handouts included a paper - Am I A Good Floor Timer? The questions to ponder are: Do I observe the behavior, language, and gestures of the child? Do I observe the style of relating? Do I approach the child slowly, with respect and thoughtfulness? How often do I let the child take the lead?

Do I let the child know through gestures, emotional tone and facial expressions that I am there for her?

Do I know when to be verbally responsive, and when it's better to quietly share a child's emotion?

Another issue that was brought up was for motor based challenges. The term crossing the mid-line was not something I had heard before. Topics in Occupational Therapy explains this phrase - " Crossing the midline, which relies on good bilateral coordination, means using part of one side of the body in the space of the other part. Some examples of crossing the midline include sitting cross-legged on the floor or drawing a horizontal line from one side of the paper to the other without switching the pencil to the other hand."

Look through assessments and reports to see if this term is ever used to describe your child and ask the Therapist their opinion. Another way to think of Floor Time is engaging in purposeful play with your child on the Autism Spectrum. During the assessment the Therapist took a book and walked around shaking it with Matthew following suit with him doing the same thing. He was quite interested to see someone doing the same thing as him in a quiet setting.

Circles of communication can be verbal, gestures, eye contact or a combination of these. A circle starts with one and closes with the other person. Motor planning is the ability to formulate the idea of an action, organize it, and then execute it. Proprioceptive is the sense of body awareness created by interpreting the information from the muscles and joints.

Receptive language - capacities involved in understanding the thoughts, feelings, desires, and needs of others. This includes the ability to interpret both verbal and nonverbal information from the muscles and joints.

Our experience with Risperdal and side effects

My children were diagnosed with autism in 1998 and 1999 and are now ages 9 and and 10. I have attended conventions, workshops and support groups over the past five years listening to parents speak about medications, enzymes, vitamins and diets to name a few therapies that families seek for their children who are on the autism spectrum. Along the way my children have developed other issues such as PICA, anemia, DSI, ADHD and OCD. Pica is the eating of non-food items such as dirt and paint chips. DSI (or SID as many know it) is sensory integration dysfunction, ADHD is attention deficit hyperactivity disorder and OCD is obsessive compulsive disorder.

I have a sister a few years younger than me that has been on many medications all her adult life and most of her childhood. My ex husband has been on several types of anti-psychotic medications for his paranoid schizophrenia. Although I have seen the progress and benefits of medication, I was totally against it for my children. My now nine year-old was severely anemic, malnourished and hospitalized a few times for dehydration. There was a push from many therapists for a gastronomy tube (feeding tube), we avoided that route and started him on Ensure Plus. The casein (milk) in this caused the PICA symptoms, but he was gaining weight and we switched over to a soy nutritional drink.

We were also attending the Feeding clinic with a team that consists of an OT (occupational therapist), Dietitian and Developmental Pediatrician. After some discussion and observation the Developmental Pediatrician gave us a prescription for Risperdal (Johnson & Johnson), which is an anti-

spychotic medication prescribed for schizophrenics and only FDA approved for adults with schizophrenia.

Luckily Risperdal is available in an oral solution, which makes it much easier to give to a child with feeding issues. For the first month the medication was administered I started a notebook to keep track of his sleeping times, food choices, bowel movements and behavior issues. There were only two instances where my son had regular solid bowel movements and they were when he started drinking Ensure Plus and taking Risperdal.

Suddenly the nightly ritual that took 1.5 hours dropped to ten minutes as a result of the medication. My son started gaining weight regularly increasing his clothing size as well as shoe size. The medication started in late February with the notebook being tracked through early May. One month into the medication I had to pick up both kids who were sick at school. It was at this time that the Principal mentioned that my son on the medication seemed calmer, plus she added that I did as well!

One dose was given in the morning before school with the second dose before dinner. The Dietitian through the Feeding clinic was regularly monitoring his weight. I brought the notebook along for each weekly session to read to the OT and gave feedback to the Developmental Pediatrician. The initial dosage ordered for my son is a low one. Within one to two months an adjustment in dosage takes place. Since the feeding clinic services are funded through the Regional Center I made a copy of the prescription for my records as well as our Pediatrician. In just two months the dosage was doubled for the Risperdal.

I informed the school and the Pediatrician as well as documenting the data in our records. I was working on the funding for summer autism camp for my kids and made note of his medication on the application, but there would be no need to administer it during the camp hours. There were no signs of side effects noted by school personnel or the summer camp counselors.

During the month of September I noticed jerky leg movements as well as twitching in his hands. These are side effects to Risperdal as noted in the PDR – Physician’s Desk Reference. During this time my four-year association with my therapist was ending due to a change in services. The therapist noticed also the movements of my son while she was in the home. This helped reinforce my findings since at one point earlier in the year I had her attend an IEP meeting at the school to confirm my son was picking the paint off the walls. It seemed that since he did not do this at school the teacher did not believe me. She was not aware of his eating dirt on the playground at recess until I brought it to her attention.

I did research online to find something I could print out about the side effects of Risperdal to bring to school for their records and to keep on top of their observations during the day. Then my son started to grimace constantly. The data I found online mentioned that the side effects are also similar to stimming, which is a phrase used regularly to describe autistic symptoms. Stimming could be rocking, playing with a string, hand flapping, etc. The teacher and aide for my son disagreed with my findings that these new behaviors were indeed side effects.

I kept in contact with the Developmental Pediatrician and she wanted me to observe my son and let her know how often these were occurring and when. The aide still insisted my son was mimicking another autistic child, which I found impossible on the part of my son due to his limitations. Finally one day the aide noticed the grimacing on the playground and understood what I was saying. This was after the fact that his dosage had been lowered back to the initial dosage.

The previous year the aide had informed me that my son was touching himself through his pants while standing outside on the playground and other classes were in the area waiting to get inside the lunch room. It really helps to keep a keen eye on the child in question because what may appear like one thing is actually another. In actuality my son was perseverating on the string found inside his sweat pants. He cannot tolerate other clothing, so it has to be elastic waist pants. I have since removed the string from all his pants to stop this behavior. It is beneficial to the child that communication remains between parents and school personnel to dissect the behavior and get to the real root of it.

Several times during this medication fiasco the teacher mentioned my son was just mimicking other children and that I was looking for things that were not there. The Developmental Pediatrician contacted me often to brainstorm on the possibility of trying another medication. I spoke regularly with the Pharmacists at Rite Aid since they were also aware of the side effects. I needed their guidance on what medications were available in liquid form.

This was a difficult time being at crossroads with the teacher and I told her she needed to take me seriously because my son was on antipsychotics that are only tested on adults for schizophrenia. The side effects continued with the lower dosage, which is not unusual since it takes time for them to cease and in some cases months and years after stopping the medication.

At this time we decided to switch to Geodon, a similar medication but with less side effects, but a new one relating to heart problems. This only comes in capsule form so I was instructed to open up a capsule and place half in the morning soymilk for my son and the other half at dinnertime. The side effects continued for a few weeks before diminishing totally.

The change in medication took place the end of October. At that time I requested a letter from the Developmental Pediatrician to give to those involved with my son. The letter mentions the change in medication due to the side effects with the statement that he needed to be monitored for movement of his hands, face and legs. It was written that this was crucial for decisions regarding medication.

I also made a copy of the listing in the PDR for Geodon and made copies of both for the nurse, teacher, aide and therapists at the school and gave one to our Pediatrician during the annual exam plus our records have been documented. It is imperative that all professional that work with my son be aware of the side effects risk so they can alert me to their observations regarding any change in behavior. Without a team effort the one who will not gain is the child with the disability.

After being on Geodon a few weeks the Developmental Pediatrician called me to see if I wanted to try the newly approved drug Abilify. At the time I was tired of opening the capsule and wanted to go back to the Risperdal, but after consulting with the Pharmacist decided to stay on the current medication of Geodon and make no further changes. I am a member of a few dozen groups pertaining to autism and learn from other parents who have their children on these medications. Every few weeks the Developmental Pediatrician comes to a session to observe my son and ask about the medication.

I have seen much improvement in my son since over two years ago when the medication issue was tackled. This is not a decision to take lightly and much research should be done on the part of the family. Also it is important to note that you should never stop the medication without the recommendation of a professional, the one who is prescribing the medication and monitoring the situation. I have read that the medication needs to be slowly tapered off and the withdrawals could be worse than the side effects. I have changed my mind and consider myself to be pro medication, depending on the child and situation.

For awhile last year I thought my older son needed medication for his OCD symptoms, but I noticed once the visits with his father ceased his facial and vocal tics subsided. Keen observation and note taking are essential in determining what is best for your child. I kept my son home the first week we changed medication so I would be able to notice any change in his behavior, diet or bowel movements and not have to rely on others to maintain this crucial scrutiny.

It was a boost to my parenting skills when the Developmental Pediatrician complimented me on my thorough notes and research on the medication issues and side effects. Initially our Pediatrician was against the data I would find online, but now she is pleased with the results and remarks highly on the knowledge I have acquired and contribute to the care of my children.

It is tough at times to push forward when there are obstacles at every corner, but ultimately we know our child best. Due to the seriousness of the medication my son is taking I was not going to give up until all members comprehended what the side effects are and note them when observed.

Please note - The FDA has now approved (10-6-06) Risperdal for the treatmet of autistic symptoms in children and adolescents.

Individual Program Plans for California Residents

If you are a resident of the State of California you are aware of the Regional Center through the Department of Developmental Services. "California's has 21 regional centers with more than 40 offices located throughout the state that serve individuals with developmental disabilities and their families."

There is an intake process that each consumer must go through before they are accepted as a consumer. They are assigned a Service Coordinator for their particular unit. This could start with Early Intervention and move into the School Age Unit and other units as the child gets older and becomes an Adult. For the child from 0-3 their plan is the Individual Family Service Plan (IFSP) before it becomes an Individual Program Plan (IPP). There is a transition at the age of 2.5 to prepare for the next phase and meetings for families to assist in this process. Matthew turned three at the end of June and the school services were set to commence in September. I did not want Matthew to have no program in place for the summer months, so I appealed and got him to continue in the Early Intervention Program through the summer so he would continue with his progress and therapies.

Families entering the Regional Center System want to know right away what services are available to them. There is no quick answer to this because each person has their own individual needs and issues. Plus there are a number of disabilities served by the Regional Center.

It also depends on which location you are served by and the actual diagnosis. Some offices do not count Asperger's Syndrome as an eligible diagnosis. Therefore parents try to get the diagnosis changed to access programs for their child. They might have to pay a fee for various services rendered based on these programs:

Parental Fee Program

Family Cost Participation Program

"There is a requirement for parents to share the cost of 24-hour out-of-home placements for children under age 18."

A child could be eligible based on the diagnosis of their sibling and obtain Early Intervention Services based on the risk of a disability. This is how my son Matthew accessed his Early Intervention Program. His first diagnosis through the Regional Center was ADHD and then seven months later another evaluation determined it was severe autism.

Both my children are consumers of the Regional Center and have the same Service Coordinator. There is a training and events department where consumers or their parents can receive training a certain number of times per year. Each location works differently, but most have seminars and support groups at their offices and families get invited to participate based on the age and disability of the consumer.

I have taken part in some training courses at other locations on Behavior and Support. I went to a few seminars on communication resources to learn what options there are. The Regional Center funded for me to attend a few autism conferences over the years as well. The most recent funding is the Stanley Greenspan Online Course set for April 25, 2008.

There are also emergency funds that help families that are low income with clothing vouchers to stores like JC Penney or a vendor who carries clothing for school and has backpacks. During the holidays there are companies that will adopt families and bring toys and food items to the homes of the consumers. There are also programs that have grocery store certificates for families at Thanksgiving and Christmas. They have parties at various offices and at the vendors locations for families.

Parents can sit on boards for the Regional Centers and volunteer at the offices. They also can work at the libraries and help set up at fairs and expos. There are fairs to share about social and leisure activities where families can learn more about these organizations. Employment Opportunities

Transportation Services is another option for families when they have no other means of getting to the therapy appointments. When our vehicle was out of service we received transportation through a taxi service where each week I had to call and request a pick up and then make sure they were at the clinic once our session was over. There were several instances where we waited a long time for a ride home and it was night and dark. This does happen if you have late afternoon appointments and the freeways here in Southern California are heavily traveled. It helps to always bring fidgets, food and drink for the appointments so everyone is occupied and not starving. You might want to bring homework also for the siblings while therapy is taking place.

Summer and winter camps are options through the Regional Center as well. You do need to look into these options early in the year due to waiting lists and the time it takes to get funding approved. If the school offers a similar program over the summer months you most likely will only get it partially funded. The summer camp my children attend runs for six weeks and they used to have Extended school year (ESY) through their respective schools for a three-week period that we declined. I apply through The Achievable Foundation for a grant to fund the autism summer camp.

Sports and recreation activities are services that can be added to the IPP. This would include baseball, wrestling, karate, bowling, swimming lessons and horse riding lessons. My children have no interest in sports so I have not pursued this further to see what exactly can be funded. I do know that Keen is a vendor.

Respite Services are for the parents to get a break and either have someone in the home from an agency watch the children while they go out for a meal, attend a workshop or see a movie. Another option is to have the respite worker in the home while you do some reading, computer work or just have an extra set of hands around.

The problems with the respite system is that the pay is very low and there are a lot of requirements for the workers to gain employment through the agencies that are vendored with each Regional Center. Trying to get the same worker each time is not an easy task. Depending on the severity and number of children in your household who are consumers, your hours will not be the same as other families. Some locations might still let you hire your own worker, but I think this has changed throughout the State. I have gone through many agencies with not much luck.

These services are changed on an annual basis with your IPP meeting at the home with the consumer and Service Coordinator. When you want to change a vendor you contact your worker with the request. They send an amendment that is signed by parent, service coordinator and the regional manager before it becomes effective.

This is the same policy for all therapies that are requested. The first step is an authorization for just the assessment. Once this is approved there is a time frame you need to get this done by. The vendor sends a report to the Regional Center that goes through the funding process. When this is approved the consumer receives another amendment with the dates the therapy is approved for, how often and where they take place. This is also contingent on an outcome that is listed on the form.

An example - IPP Amendment

Reason for Amendment - Additional Outcome Plan/Living

Outcome - To maintain consumer in the home family will receive respite care to alleviate the stress of raising a child with a disability.

Supports - Mother will receive 32 hrs/mo (sib rate) of agency respite thru XXX to maintain consumers at home from 11/1/07 - 10/31/08

Respite will be reviewed at least on a yearly basis and re-authorization will depend on outcome of providing relief to parent.

There have been times that I was not pleased with the assessment report for a therapy requested and did not pursue it further. Also a few years later we requested a therapy through another vendor and had better results. While receiving therapy services through a Regional Center vendor you can always request a change in therapists. We first changed vendors with Floor Time and then therapists at the second clinic.

My children each received a three month period of music therapy before they changed the rules to incorporate typical neighborhood children into sessions and we opted out. Nicholas had an adaptive skills trainer for a six month or one year period with Jay Nolan Services as the vendor.

Other services available for families include the following:

Parenting Skills Training

Supported Living

Speech Therapy

Physical Therapy

Behavior Management Training

Behavior Support

Classroom Aide

Genetic Counseling

Diagnostic Testing

Adult Day Activity and Training

Assistive Technology

After School Care

Lending Library

Mobility Training

Intensive Intervention Services

Extended Day, Year and Saturday Services

Childbirth Education and Preparation Services

Licensed Residential Facilities

The IPP Plan covers living, education/work, social/recreation and health. Consumers can get recommendations for dentists, therapists, support groups and also request their Service Coordinator to be part of the IEP team at school. If there is an incident at a vendor the Service Coordinator will have to visit the site to file a report and review their procedures. This happened many years ago when Nicholas burned his hand while they were cooking at summer camp.

The Regional Center will want copies of the IEP and obtain progress reports from vendors to determine continued therapy. They will also request physician records and want medical forms filled out. Consumers can have access to their files and have copies of documents for their own files.

I have taken part in studies that were done at the Regional Center offices and also a nurse visited once to see how the feeding was handled at home with Matthew. Many years ago when registered with a visitation network the counselors there faxed their reports to the Regional Center since I did not have a Lawyer and I wanted to know what was taking place during parent visits with the noncustodial father.

Regional Center workers also attend conferences, trainings and support groups and can pass along information they learn and obtain to consumers. Many Regional Center Service Coordinators and Managers are parents and relatives of those with developmental disabilities.

Communication Devices for Nonverbal Children

My nonverbal son Matthew is almost finished with fifth grade. I recently purchased the Go Talk 9+ device for use at home and school. Prior to this device the Los Angeles Unified School District loaned us the Cheap Talk 8 device for home and school usage.

We were first introduced to the low cost voice-output device when in preschool special ed for three years at an Elementary school campus. This is where the initial AAC assessment took place. The Cheap Talk followed Matthew to his next classroom, as well as onto the next Elementary School until I just returned it a month ago.

The Cheap Talk had six levels with four icon boxes on the top and four on the lower level. It was a bulky item that was not easy to carry back and forth and got banged around a lot by Matthew when dumping his backpack on the ground. The device has to be turned on and off automatically by an adult, which meant that in preschool it was left on most days sitting on a table for all students to pound on. Since I had signed for this device I asked that it be kept out of reach of the classmates who did not really grasp that this was not a toy but a means for communicating.

The problems we encountered over the years included having a different teacher each year along with a new SLP. By the time everyone was acclimated winter recess would come along and then intersession with a month of half school days. Then the next process was to decide on photos and obtain overlays from the AAC department.

There would never be any specific goals in the IEP for utilizing pecs and the communication device. Instead these were listed under supports and more generalized. I tried to implement the Cheap Talk for outside therapies and would take photographs of therapists and Matthew engaging in various forms of play and learning. We were met with resistance at every turn and step along the way.

One year the Cheap Talk would be at my house collecting dust, while the next year I would make contact with the AAC department to get them to utilize this once again at school. The first year at the current Elementary School the AAC accessor came and had meetings with the aide, teacher, SLP and OT. I was informed of these after the fact. I requested a report for Matthew's triennial IEP in 2005 and for an AAC representative to be present so we could brainstorm some ways to utilize more visual supports in the classroom.

My other son Nicholas is the one who recorded the words for the Cheap Talk device. This was a neutral voice for the classroom and would not distact the other students by being a familiar voice. We used many universal terms for all the levels, so that the last button to the right on the top row would always be Help and the bottom row would indicate Done.

I would have an overlay with therapy items, another one for food related items, one with colors and then one for directions like - more, wait, look, bye, hi and no. One of the levels was to be utilized by the speech and language professional, but they never got around to bringing the Cheap Talk to the room for therapy.

In order to get all this implemented one person needs to be the responsible person and make sure the device is being used with all related services, overlays need to be done and meetings to cover updates in goals and how the pictures need to be expanded, etc. Some people use colored photos, others want images from real items and then there are those who prefer the stick images and figures. There has to be a team effort with open lines of communication. We lost that objective for many years and it is my hope that with this transition into Middle school and a new aide that my son will start to thrive in his communication skills.

One year after attending an Autism Conference and browsing all the exhibits, I met with AAC and SLP at the classroom to observe Matthew. This was an attempt to try to get the district to change from the Cheap Talk to the Go Talk. I brought along catalogs of products and the camp report on how well Matthew did with the Go Talk. AAC brought along a broken device and said that pushing the buttons was harder for kids and really wanted to give the Cheap Talk another try. We came up with ideas for how Matthew could participate with the device at circle time each morning.

Once I received the Go Talk 9+ device I contacted the AAC department at LAUSD and let them know I wanted to return the Cheap Talk device and that I bought the Go Talk 9+ based on the experience Matthew had the two previous summers at camp, where this was utilized on a daily basis for communicating his wants and needs. You are not limited to overlays with these devices and can use regular picture cards and velcro them to the square box for whatever need that may arise. I have plenty available from the pecs wall, notebooks and boxes galore. There are Activities using picture cards and the Flash CD, plus I run a pecs group on yahoo.

Unfortunately the new assistant was not there the day AAC and I observed, but we came up with some ideas for Matthew to be conversational with his assistant when performing tasks. I wrote the following phrases down for overlay development:

you do one, I do one (turn taking)

let me do it, help me (interactive)

want a squeeze (or a hug)

request a fidget (like a ball or pencil grip)

the 3 top core vocabulary keys for all levels are (yes, breaktime, no)

To get feedback on his work he could press button to ask - how did I do, what next, I am waiting or look to get attention on a task he did. For interacting with teacher during circle time the days of the week could be programmed for one level and then she would ask what day is today. The same thing with all the students names/photos and then ask who is absent today?

Some phrases for Matthew to indicate his needs - too cold, too loud, repeat, no more, wet, sick, feels good. Other ways to interact with others would be for good morning, hello, thank you. This makes it more conversational for Matthew to be part of the classroom.

We did receive the overlays from AAC last week so Nicholas and I got four levels programmed. I never indicated anything about Mc Donalds but there was a image there next to the help button that his assistant was working on when Matthew needs his new sneakers to be tied. That day upon getting home Matthew went into his backpack and got out the Go Talk pressed Mc Donalds three times and off we went to Burger King since they sell onion rings and that is his current food of choice.

The next day at school the assistant had to cover up the Mc Donalds icon. We need to do some fine tuning to this overlay. The Go Talk is sleek in deisgn and more appropriate for Matthew as he enters MiddleSchool.

Eating Issues For Autistic Teen

Sometimes as parents of children, teens or adults on the autism spectrum we hope to find someone who has experienced something similar to what we currently are dealing with in our own homes. It helps to know we are not the only ones with a kid who is doing that or having said difficulty or not being able to break a habit that should have happened years earlier.

What I am about to share is not easy to publicly state, but if this could help one other parent know they are not alone with this dilemma or situation than it is worth the embarrassment. Several years ago I read an article in a magazine that had the same effect on me. I was able to locate through some research the Father in the article to contact him to seek some advice. A few years later I followed up as we were still dealing with the same issue and found out his son had been placed in a group home.

My nonverbal son Matthew is fourteen and turning fifteen in a few months. From 2003 to 2008 he received Feeding Therapy from a Medical Group. The Feeding Team consisted of a Dietitian, Occupational Therapist, Marriage and Family Therapist and a Developmental Pediatrician. This was funded through the Regional Center. For a few years therapy was at their location, which housed a few kitchens and therapy rooms.

This is where Matthew started on his anti-psychotic medication. They also visited at school through the years and then I requested the visits to be at our home where it was needed the most.

For the past four months we have received ABA in the home four nights a week. What the Feeding Team could not tackle in a five year period was finally mastered in a few months with the help of some behavior therapists.

Matthew can now drink a variety of liquids from a cup, utilize a fork, eat a variety of foods and no longer drinks from a bottle. For fourteen years my son has been getting the bulk of his nutrition from a baby bottle. He went from milk to ensure plus to a soy alternative drink to soymilk to ricemilk.

He would consume up to six bottles a day. Most often the only way to stop the screaming and wall banging was to let him have a bottle. At last count prior to the start of behavior therapy there were 21 holes in walls throughout the house we have rented for twelve years.

Two years ago summer camp stopped when the couple that ran it moved up north without any prior notice to families. Matthew spent eight summers going there. The classrooms had small refrigerators and there was always a bottle there for when Matthew might need it when they came back from a walking trip. He would drink one on the way home in the car. One summer I had jury duty which meant he spent two hours after camp supervised with access to bottles for one week.

He took his medication in the bottles. At one point he was drinking from a reusable squeeze type bottle that had a little straw inside. We ended up tossing the straw and he drank from the opening. This would be sent to school with soymilk and he liked soy yogurt. His food repertoire was string cheese, chicken nuggets, hot dogs and bacon. He did learn to like chicken noodle soup, tomato soup and squash soup from feeding therapy visits.

There were many food jags where one day he would stop eating a food item and never want it again. The foods offered through the Feeding Therapy were all finger type foods. I requested utilizing utensils so that Matthew could sit at the dinner table instead of pacing through the house with a bottle attached to him.

Five years ago when we took a trip to San Diego for three days to visit Sea World we had a supply of bottles and soymilk. We made sure our room at the Holiday Inn had a refrigerator and microwave.

The article I mentioned earlier that I related to had a picture of a Dad with his son at a park and he had a bottle that contained apple juice with his medicine. It was the first time I had heard of another family that had an older kid drinking a bottle.

I had inquired to the Medical Group if they could put me in contact with other families receiving Feeding Therapy, but that never materialized. The reports from Feeding Therapy looked organized, but that was not how the sessions went. We were left on our own without ever mastering the goals.

The whole experience with them is still hard to put into words, but through ABA the end result is that Matthew is eating turkey burgers, porkchops, macaroni and cheese, tacos, burritos, spaghetti, ravioli, peanut butter and jelly, chicken strips. He drinks orange juice, cran-raspberry juice, water from water bottles and in cups, yogurt drinks and ricemilk in a cup.

He even requests the juice and easily opens the refrigerator to open a water bottle and walks around with one in his hand. He does the same thing with water bottles at school, except he picks up the ones from the adult aides and drinks them.

This past summer there were a few weeks of vacation between the extended school year (ESY) due to furloughs. I spent those weeks at the drive through at Burger King everyday to buy chicken fries and french fries for Matthew at a cost of $50 each week. As I would place an order the guy inside would always say - "Oh, its you".

The ABA therapy started Dec 1st. Over the course of the three week holiday break I took Matthew with me to the laundromat Sunday mornings. One Sunday morning we went to Burger King and I ordered french toast sticks for Matthew. When I drove up to pay and get the order the guy who used to know my order and voice was very surprised to see me and asked where I had been. I pointed to Matthew in the back and said he changed his eating habits!

In January the Supervisor and Director for the ABA company came out to discuss the bottle and toilet training. That day we stopped the bottle. Matthew's Dad comes over on weekends for a few hours and I go out to do errands and workout at the gym. Matthew knew there was still a bottle in the cabinet and was drinking two during these times both Saturday and Sunday. We saw a difference in his behaviors on Mondays.

I was worried the Dad would not be able to handle Matthew's behaviors if he did not get the bottle, but it was hindering the progress we made and I tossed it in the garbage in front of Matthew last Saturday and they all survived the few hours I was out on Sunday.

The wall hitting has ceased so now the holes can be patched, except we might wait on the bathroom since April 1st is the start of Toilet Training.

Matt is also utilizing his Go Talk communication device more often in the home and is no longer attacking me. He washes his hands on his own and we are currently working with ABA therapists on tooth brushing.

We should have started ABA years ago.

New ABA Skills for New Year

A year has been completed in the home for ABA with much success in the eating areas. Matthew now knows how to use a fork and spoon and has increased his food choices to anything and everything. The issue of eating slower and taking bites instead of just inhaling food is still being worked on.

He regularly eats fruits like pears, melons, apple slices, bananas and grapes. Next step is to expand his vegetable picks from carrots to other options. He is eating cereals, but does prefer cinnamon and peanut butter varieties. Drinks include rice milk, V8 strawberry and banana light fusion drink, orange juice and yogurt drinks.

Matthew is a big meat eater as well, with turkey burgers being his favorite. Pancakes and macaroni cheese round out his favorite meals. Steak, chicken, meatloaf, pastas, porkchops and ham steaks are consumed with no hesitation. Gone are the mozzarella sticks and finger foods that he would snack on. A favorite snack now is peanuts.

Progress reports are done on a six month basis. Behaviors have changed over the course of time from banging walls and stomping feet to grabbing my arms. Holes in walls and broken windows hopefully are in the past. The rigid behaviors have all but ceased where before they were a daily constant.

I've been given choices on what adaptive living skills to work on and have added some that I find needing assistance with. At this point in time I prefer to focus on self help skills than on social or play skills. Because tying shoes is the goal on the IEP for Occupational Therapy I wanted to add that to our ABA in-home program. This has just started in the past week.

We have been working on Matthew not trying to bite me when I clip his fingernails. We now soak his hands in a container at the sink to soften them before I attempt a few clips on each hand. I always have to end the session with the emory board. Many days before the bus we are at the door with me filing his fingers. I decided it would make more sense to have Matthew learn to use the emory board on himself instead of all the steps and drama associated with cutting his fingernails. This was well received by the supervisor of our program, so we started this last week as well.

Tooth brushing is working quite well with Matthew able to do this with prompting, but the task of teaching him to spit is not working out. I have searched online for suggestions.

For years now I have been opening a capsule and putting it in his drink twice a day for his medication dosage. I asked about trying to teach Matthew how to swallow a capsule. We have started this but it is quite confusing to Matthew as he does see me break the capsule and has chewed vitamin capsules, caplets and opened them up. I am also looking online for guidance on this task.

I can always tell when Matthew has eaten his school lunch by looking at his pants upon exiting the bus. He has the habit of wiping his hands on his pants so this goal is being worked on in the ABA program to get him to use a wet napkin or towel to clean his hands. I think the food at school is a lot messier.

For tying shoe laces in the program they are using backward chaining. Matthew is able to remove and put on his shoes independently. He can put on his jacket and zipper it plus he is now comfortable wearing the hood in cold weather or when raining. He prefers that to holding an umbrella. Whenever he wears a jacket it needs to be zipped all the way up. This is something we may tackle at another time once the shoes has been mastered.

In the last year Matthew has met the goal for cup drinking, hand washing, putting his shirt on, his pants on and expanding his independent leisure skills by coloring for ten minutes. I did have to remove the crayons and pencils to a cabinet since he was drawing on furniture and walls.

I declined when asked by the ABA program supervisor if I wanted them to teach Matthew how to use the microwave. I suggested teaching him how to wash the dishes would be more appropriate for his level. We are now working on him doing his plate after eating and he is rinsing his cups and silverware before putting them in the sink bin.

We are still in the throes of toilet training with Matthew wearing boxers during session and sitting on the toilet for 5 minutes every 20 minutes. There were many accidents when we moved the time to 25 minute intervals three different times, so twenty minutes is his threshold. This is only being done three times a week during the 2.5 hours of ABA. This has not expanded beyond the program for home or school. It is a long process.

Once the toileting has been accomplished the next step will be learning to swim and hopefully go to a summer day camp.

Emotions of Raising Autistic Teens

p>Most often there is no advance warning with the incident lasting under a minute. The lingering affects cause an occasional flinch when he gets in close proximity. I am referring to the times my son Matthew goes on the attack. I am the victim with the scars to prove I survived the latest behavior battle.

I do learn from each instance but they all take my breath away leaving me wondering how we got to this point. The last two were provoked by therapists that I allowed to work in my home to assist in the teaching of adaptive living skills. I know I need help in getting Matthew ready for the transitions into adulthood and living as independently as possible. Yet the very people we rely on do not seem to grasp the complexities of autism spectrum disorders and the challenges they face in their daily living.

Instead they come into our home telling us what we already know while we continually share the same sixteen year history that is on file and a waste of crucial therapy time. This last episode resulted with my face being pushed into the stove with his arm around my neck while three employees of this latest behavior agency stood by before one actually came to my rescue after I screamed for help.

The first meeting of the therapist also included the supervisor along with another therapist with no explanation on why she was here. No one bothered to inform me that there would be three of them. Maybe my household of three should show up at their office one day and invade their personal space for two hours.

The first session was meant to be observational on the three behaviors that were decided on from the behavior assessment. This meant watching Matthew eat to see that he gorges on food and walks around without sitting for the entire meal. The main behavior that is really an adaptive skill is the toilet training with the third skill transitioning from a bath to shower.

The supervisor stepped in the cat water bowl and soaked the whole floor. Due to their late arrival I postponed giving Matthew his night time medication by forty-five minutes, which also meant a later dinner hour. With three onlookers in my kitchen I opted for something quick in the microwave for Matthew while Nick and I had to wait until 8 PM for dinner.

Matthew reacted to the three strangers in the kitchen hovering over the table where his food was by lunging at me. I was near the stove so I ducked with my head down as he was pounding on me and scratching while in a choke hold.

The supervisor spent the entire two hours with a winter type coat and scarf wrapped around her neck. The other girl had on a coat as well with the male therapist in casual attire.

I lashed back at the supervisor by telling her she did not make us feel comfortable in our home by keeping her jacket and scarf on and not explaining things to Matthew. After that I left the room to compose myself. While in the living room Nicholas asked me if I was crying but it was too hard to even talk at that point.

I had such mixed feelings since I was still scared that Matthew might strike me while my arm was stinging from the scratches and my jaw was very sore. At this point I was upset with myself for leaving Matthew alone with them in the kitchen but if I had gone back in it would have been to kick them out of the house.

I did not like how she went on to tell Matthew what to do when I finally emerged. I thought I was going to curse her out when she asked me to give Matthew a bath so they could observe. I refused to put us through that ordeal and told her so. I felt like clapping when they finally left, but enjoyed seeing a skunk in my front yard and their reaction as they made their way outside.

Over the years we have endured a bevy of therapists that spew their future success of toilet training Matthew and getting him to speak before services are even rendered. I would rather they show compassion and common sense when it comes to dealing with young teens on the autism spectrum.

The only person Matthew appears to be scared of is his brother and he has a fear of dogs. This does not stop him from leaving through the back door to walk along the streets of Los Angeles in his pajamas before LAPD picks him up. I worry that he may be enjoying the attention or perhaps it is the ride in the squad car that he is craving.

When I see him sitting on his bed looking adrift I feel sad because we have no real means of communication to get to the core of his emotions and his thought process. Nicholas wonders what Matthew thinks about and sometimes says that could have been him as the nonverbal one.

Having grown up with a disabled sibling I was often told to think how my life would have been had I been the one born with a brain tumor and blind. For years I lived in a house where I was scared of my own Mother. I preferred staying out all night to prolong the beating I would get from a bad report card.

While I certainly do not want any of my kids to be scared of me, I also do not want to be in the position where I fear for my safety as a result of an attack by my son. In a few years time he will be finished with high school and transition into the adult population.

For now, I’ll continue searching for answers.