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.

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.

Autistic teen terrified of dogs

My son Matthew is nonverbal and now 16 years old. He has always been afraid of dogs and sometimes the encounters are chaotic in nature with the result someone getting hurt in the process, although not from the dog, it is usually from Matthew.

For years we used to walk around the lake down the street but there was a busy street on one side and the actual lake on the other side so when a dog was coming around the sidewalk there was not a lot of room to move away. Also bicyclists used to be dangerous as Matthew did not know what to do when one was getting close to us and I had to guide him to the grass area or we would stop so they could get around us.

Since the lake closed down for renovations we have been walking around the park and doing trails and stairs. This presents problems when we come upon a dog or dogs that may not be on a leash or get close to Matt when on a leash. He goes on the attack towards me and digs his fingers into my skin and runs or pushes me into the woods or a ditch and one time I almost went down the stairs.

I get bruises and marks on my skin from his attacks. He also runs and I have to catch up to him to get a hold of his arm or hand. Now that he is taller at 5'6 or so and weighs about 105 pounds it is not as easy as when he was younger.

Also in the earlier years I would get all those autism awareness shirts for Matthew to wear on excursions and for the summer months. Whether or not those really helped during this trying times is still a mystery because we get the stares and nodding of the head like they know or understand.

This is the reason why we still live in the same duplex house for fourteen years. All the stores we go to have the same people working for a number of years and they are familiar with Matthew. It is basically the other customers that have no clue what this teen boy is all about.

Now we deal with his foot stomping and constant burping while in line and out and about in public. He eats like an animal, gorging on food like he has not eaten in days.

Matt is not toilet trained so he is wearing generic depends for men underwear. Due to the large amounts of water he is drinking this summer he needs changing every hour or you will find he wet the floor or bed.

A few months ago we went to tour an open house for an autism school for high functioning college students. This was for my other son Nicholas. Matthew spent the whole time touching his private part while we were walking and he was laughing the whole time. Most of those in attendance did not seem to have any previous experience with a severe teen on the autism spectrum. Nick wanted to know why I brought Matt with us - like there was another option available.

I wish there was some sort of therapy that taught those kids on the spectrum how to deal with their fear of dogs. I would think they would need to use dogs for this and that would never work. We would not be able to afford a dog for Matthew for therapy so that idea is out thinking that would protect him from other dogs and also from escaping the house and school grounds.

Some regrets and some planning for the future

When you are raising two sons that are fifteen months apart on opposite ends of the autism spectrum some of their issues or needs might not be addressed due to one taking precedence over the other.

My son Matthew turned 16 yesterday and gives me time to reflect on what we have endured and gone through since the diagnosis of autism at the age of two. Nicholas was diagnosed first and when Matthew was diagnosed I had assumed he would not be as severe as Nicholas. The opposite happened instead with Matthew still not toilet trained and nonverbal. I wish I had done somethings differently and pursued other treatment options. This was at a time that having two with autism in the same household was not common. Every time I had an assessment for therapy for Nicholas or Matthew they wanted to give services to both boys when clearly they had different deficits and symptoms.

For five years we had medical students coming on Sundays for an hour to learn about autism and spend time with Nicholas. This was my way for him to get some individual attention. For two years we had the same girl coming every week. The last year was a guy who would bring his girlfriend with him and talk about girls with Nicholas, which was inappropriate.

I had an adaptive skills trainer for six months come and help him learn some skills, but then opted not to continue with that due to the way the guys dressed and feeling uncomfortable with them in my home.

For a number of years I was a member of a DTT-NET egroup, although I hardly participated and more just absorbed all the information shared. DTT stands for Discrete Trial Training. We did not get the services other families did through the Regional Center. I should have pushed harder to get some therapy for Matthew to teach him to talk instead of them always focusing on pecs and sign language. Neither one of those worked for him.

Now at age 17 Nick is interested in basketball. One of the Sunday volunteers had younger siblings involved in sports and she would share all about those events. I was hoping to get Nick involved in sports or musical instruments. Maybe had I pushed he would have had another activity to meet his peers. We could not do these though because of Matthew and his therapy appointments and issues with behavior and eating.

Nick missed out on a lot and I tried to make it up to him by introducing him to Yugioh and Pokemon. I bought the gameboy for him even though he had no interest. That helped him in Elementary school as he had more in common with the other students. At the time all he talked about was Dinosaurs.

From third grade on Nick wanted to go to the LA Zoo High School Magnet. His fifth grade teacher told me he would be good in Drama. Nicholas has recently told me he no longer wants to do online school and want so go back to public school. Next year he will be a Junior so we will use that time to prepare. The computer desktop is a loaner through his school so we need to get a new one. He needs clothing and to work more on his personal hygiene and communication skills.

There is also the issue of which high school to attend. There are several within our home address that are known as his home school to choose from. We are considering an art academy. He spent his elementary school years drawing in note pads. We had at one time over 100 of them with his comic book drawings and his stories and characters.

Other families helped their students explore and take their art drawings to the next level. We had ideas to make cards or sell mini books on etsy or other similar sites. I think Nicholas just needed some nudging to get there but due to issues with Matthew I could never find the time or money to help explore this venue with Nicholas.

Recently the regional center coordinator had suggested that when he goes to College and takes art he may get some feedback from a teacher that would be beneficial. He is now open to drama classes. I just feel like all these ideas I had three years ago are now coming to light so we need to roll with it while the interest is there. I guess it is not too late.

I cannot plan out his life for him but have shared with him how his interests can be something to explore for career. He loves watching some food shows like Cake Boss and I suggested taking a year to go to cooking school - this is good for his future as he will learn a vital skill. The art is a fun hobby he needs to be open to and learn about other aspects and not just be limited to drawing. He wants to work at the Zoo or at an animal Sanctuary someday. At this point he needs to work on learning some office type skills and do internships or volunteer at organizations for animals or shelters to get that experience.

Matthew will be going to high school until he is 22 so the has many more years in the school system. Once he is toilet trained I want him to take part in the after school track program for special ed kids and then move on to Special Olympics. I do hope to take the one-year certificate course at the community college to learn to be a special education assistant. This will help Nicholas when he attends that college so we know the layout and system. Also will be something for me to fall back on.

A Few Autism Emotional Moments

As the parent to two teens on the autism spectrum I have not been through the stages some families go through during or after the initial diagnosis. I have never been in denial or cried for what could have been or lost time, etc. I read stories of how Dads are sad they will never play ball with their sons or whatever.

While I do not understand that since it is not the end of the world to have a child with autism or for the person who is on the autism spectrum I have had a few moments over the years when I got emotional.

The ones that I can recall are when I listened to Temple Grandin at a Back to School Conference in August held in Pasadena. I felt the tears start as I got up to leave the auditorium to see the exhibitor tables out in the hall. A little while later I went up to Temple at the table she was hanging out at and felt awkward trying to come up with something to say besides great speech. It was like meeting a celebrity.

The other day we went to the autism fair at the Rose Bowl in Pasadena. I was parking the car and got that emotional feeling come over me. It was quite a sight to see all these cars and families with their kids getting ready to do the fair and the walk. I am not sure if I was emotional because it was just me and my kids while the other vehicles had extended family members and friends with them or just knowing that this many families were at the same location at one time seemed amazing to me.

Then yesterday while I was agitated over some rude remarks on twitter my nonverbal son who likes to flip through the photo albums brought me one with a picture in his hand that fell out. He needed me to put the photo back into the plastic . I turned it over to see the first picture taken of him with me at the Hospital the day he was born. It was like he knew this was a special picture and it was a great moment to see that picture again after all these years. I got up from the computer and to be with my kid instead of dealing with individuals online that pushed my buttons.

Join The Play To Grow Twitter Chat

I am hosting a chat with author Tali Berman of Play to Grow! Over 200 games designed to help your special child develop fundamental social skills. This is taking place on twitter Tuesday, April 28th at 11 am PST.

The chat will last for one hour with five books to give away. If a winner is located in Canada or International they will get the book for free, but have to pay shipping charges.

The hashtag used for the chat and promoting the chat is #sonrise. Talia is a Son-Rise Teacher located in Israel. I am in California so this is the best time for both of us to have the chat.

Over 200 games designed to help your special child develop fundamental social skills, is the essential companion to The Son-Rise Program® Developmental Model. This user-friendly book contains 201 fun, creative and simple-to-prepare games.

The games are divided according to the 5 stages of development outlined in The Son-Rise Program Developmental Model, and each game is designed to address a very specific goal listed within each stage. Now parents simply need to locate their child’s level on the developmental model and use Play to Grow as their guide.

There are various twitter applications that you can use. I prefer www.summize.com where you would just type in #sonrise and follow along in real time and click reply to respond to a particular post.

When I attend twitter events I keep a window open to the host and another one for the guest and then one for summize. When you hit reply in summize it opens a new window in twitter with the @ sign ready to respond to that twitter member. You might want to close window when it has finished posting. You will also need to make room in your tweet for the #sonrise hashtag.

There is also www.tweetchat.com where you would sign in using your twitter ID and password and when it asks what room to enter you would type in #sonrise. I have tried it a few times. You do not have to keep typing in the hashtag if you use tweetchat.

Another option is to utilize www.tweetdeck.com. I went there once and got lost so never tried to figure it out. There are many twitter members that use this if you seek guidance. I would test it out now with other twitter gatherings that take place on a weekly basis like Monday nights it is #journchat and Tuesday evenings it is #gno (girls night out).

I suggest trying these out if you are new to twitter to see how real time chat events work and how they flow, etc. When you RSVP below in Mr Linky you will be using your twitter ID, not a website as this is a twitter chat and going to your website is not going to help another twitter member follow you at the chat.

Feel free to post relevant questions in the comments. This chat will last for one hour on Tuesday, April 28th 11AM PST, 2PM EST. Five copies of the book will be given away.

Service Dogs Have Appeal to Autistic Son

Last month I took my 14 yr old high functioning son Nicholas with me to the free exhibit day at the CSUN Technology and Persons with Disabilities Conference. A new roof was being put on the house we rent and I wanted him to get out of the house. He is homeschooled with California Virtual Academy.

This was the first year I have been able to attend to see all the exhibits. It is something I have known about since Matthew was in preschool and the AAC Accessor mentioned the conference to me.

This is an annual conference held at Hotels near LAX. Now that Matthew takes the bus and goes to Middle School I had enough time to drive over there and back before he arrived home. I do plan on writing about the exhibits I checked out over at Autism Spectrum Disorders.

I finally got to organize all the pamphlets and sample Cd's I got from the expo, but thought I would post here on the blog instead about the Service Dogs that were all around the exhibit halls at both Hotels.

The exhibit halls were all organized according to disability. There were many tables and displays for the visually impaired. This meant people bringing their service dogs. Nicholas is scared of dogs. During the eleven years we have lived at this house there have been many dogs in the neighborhood. We are a cat family and some dogs have chased and even killed cats.

One of the reasons he never took to bike riding is because all the kids that learn on the street have to endure the barking dogs from a few homes. The same with the skateboarders too.

Nicholas pointed out the service dogs to me. Some even had signs around their necks saying they were working and not to pet. There was no barking at all. Some dogs even seemed to be socializing with other dogs as they were grouped together when their owners were having a conversation.

We went to the second Hotel to see the tables and noted there were not too many service dogs at this location. We headed across the street to Burger King for lunch. Nick wanted to go back into the first Hotel where we had parked to do one more walk around the exhibits to see the Service Dogs again.

He also got to enjoy seeing the planes come in for landing and a few demonstrations of communication devices that would be a good fit for Matthew someday in the future. Nick talked about the dogs on the way home and for days later. He has started watching the Dog Whisperer again and the Dog Championship show recently on Animal Planet he put on DVR to see again.

Being around the Service Dogs gave him some confidence to be more comfortable around dogs. He even said he may try petting a dog someday. I thought this was such a positive experience for him that was so unexpected. I just wanted to get him out of the house and be the extra set of hands to carry more stuff for me.

It was nice to hear him talk about a different animal rather than just cats all the time.

Listing of Games from Twitter Party

There was a party on twitter Friday, Feb 27, 2009. The topic was board games with #timetoplay the hashtag. This was a sitewarming party for Time To Play Mag. "TimetoPlay is a site about family entertainment/toys"

Many twitter members were sharing their favorite games and I wanted to keep track of those being tweeted so I have compiled a list of them. I will begin first with the ones I posted on:

1. Kerplunk
2. Battleship
3. Connect Four
4. Uno
5. Checkers
6. Topple It
7. Air Hockey table game
8. Leap Frog Memory Mate
9. Leap Frog Spell & Match
10. Lego Bionicle
11. K'nex
12. Parcheesi
13. Pegboards
14. Operation
15. Chinese Checkers


Now the list of games that was tweeted on:


Banagrams is a word tile like Scrabble

The great thing about Banangrams is that since each person has own grid, 6+ can play.and you can handicap for kids #timetoplay

Sequence by Jax is a great learning game

Rummikub is coming out, FINALLY, with a Jr version

PERFECTION has the weird shapes and timer

Wild Planet, who makes Hyperdash, makes a version for younger kids called Animal Scramble

Best part of Stratego..placing the bombs

Card Games from GAMEWRIGHT, they have the best card games for kids 6+

Loot

Battling Tops

Wig Out

Hottest toy this Spring: Skimboard Surfer. Boogie Board for the backyard

Sidewalk Crayons washes away just like chalk

Best Game EVER that didnt make it: Shout!

Guess Who

Scene It


Wait to you see the new Candy Land, in which you build your own path

Masterpiece

the new Chicken Limbo is called Giraffalaff - similar game, new character, lots of fun

they added two new characters to Candy Land this year - the game is celebrating 60 years

Hungry Hungry Hippo

Wack a Mole

Canasta

Hasbro's coming out with a new Game of Life based on extreme reality - should be fun

Twister Hopscotch

Chutes and Ladders

Uno Flash

Uncle Wiggly Game

Apples to Apples Jr

Guillotine card game

PayDay

Old Maid

Caterpillar Color Race by Discovery Toys

Spoons

Barrel of Monkeys

Hi Ho Cherry

Rummy Royal

Bingo

Hullabaloo

Scattergories

Pictionary

Mouse Trap

Blokus

Battle of the Sexes

39 Clues best for 8-12 somewhere around that age

Cranium

Clipo

Rushhour

Monopoly

Tic Tac Toe

Pic Up Sticks

Simon Says

Qwitch is a card game w/ numbers & letters, you each get 1/2 the deck and the here are + - & = cards, it's fast moving & fun

another GREAT game for the little crowd that gets them moving is Hyper Dash or Hyper Jump

Clue

Sorry

Scrabble

Yahtzee

Bop-It

Go For broke

Scrutineyes

Responding to the Tough Questions

There are a few questions that no matter what will always be asked. As the parent to two kids on opposite ends of the autism spectrum they are inevitable, but still surprising.

My sons are now 12 and almost 14. When my youngest son was nine years old I attended training sessions through a clinic for Floortime. In order to get funding through the Regional Center families had to go through the training classes, which were held on a weekly basis during day and evening hours. The Regional Center is for those in the State of California.

I was able to answer all the questions that were posed to the class each week and gave examples of our experiences. Most of the other parents were there for their very young children. There were some professionals taking the class as well.

At the end of a class another Mom asked me one of these dreaded questions. She wanted to know why I was just starting Floortime for my 9 year-old-son. It really was none of her business, plus the answer is not an easy one to respond. Being in the same class for all those weeks she should have known that I am a single parent with two kids on the spectrum doing it all alone, no family in the same State.

I did not want to go into the explanation that a few years earlier we had a Floortime assessment in the home from another agency. I did not appreciate the way they portrayed me in their report or the way they handled being in my home. I am not about to have an agency bring their employees into my home who disrespect me or my children and will not be utilizing the pecs cards for my nonverbal child or appear irritated because my son needs a diaper change.

I am not about having people in and out of the house disrupting our lives and routines, no matter what the end result may be from the therapy. Pros and Cons of Assessments offers insights into our experiences. You might want to consider some House Rules for in home personnel. Here are our Rules for a Respite Worker.

A few summers ago I thought we were getting some behavior therapy, but it turned out to be parent training. The girl who came for the assessment looked like she signed on for a modeling assignment. The actual so called therapist was a singer in a punk rock band. The three months did not go fast enough. The clothes and attitude they brought into my home that summer was unreal. The supervisor girl who did the assessment wanted to do pecs with my son and DTT. She was to be supervising the punk rocker. The punk rocker's mission was to be the one to get my nonverbal son to talk. Just in case I forgot to mention - we live in Los Angeles.

Over the years I meet up with someone via email or in person that wants to be the one to turn my son into a verbal kid. They seem to forget that I am the parent here. I did not ask anyone to try to get my son to speak, especially those clearly not qualified to do whatever they think they can.

I really do not know how to respond to those who want to tell me about miracle stories of someone learning to talk through this or that therapy at the age of 9, 12, 15, whatever. I really want to say it is none of their business. If it happens, it happens, not the end of the world if my child cannot speak. Evidently it is something they cannot accept and need to get over it.

My son did turn 12 in June and is still wearing Huggies Goodnites. I do not particularly like the questions from people asking me why he is not toilet trained or when do I plan to do it. When we are both good and ready. Case closed, butt out.

So to recap the questions I find annoying and wish they would stop:

1. Why did you wait so long to try XXX therapy - or why did you not try XX therapy?
2. What have you done to get him to be verbal - have you tried XX, I know so and so tried and now talks after being nonverbal.

3. When do you plan on toilet training?

I can do without hearing these three questions. Every kid is different, nice that yours now does this and that and was trained in one hour, two days or whatever. Stop bugging me.

Panel Members for Autism Twitter Day

Autism Twitter Day is Tuesday, December 16, 2008, taking place on www.twitter.com. More details are available here. Please do RSVP with your twitter ID and follow the other RSVP members to keep up with the tweets.

The panel members will be specifically addressing their topic and your questions at the following times - 9:00AM, 12:30PM and 8:00PM Pacific Standard Time.

I advise having a window open at www.summize.com to follow the conversation at set times and throughout the day using #ASD and then refresh as needed. Speakers and other tweeters will need to have another window open in www.twitter.com to do their initial tweets and then hit reply at the summize page to respond to questions. This will open another window in twitter when you hit reply to answer a tweet. Simply close that window when done so you don't have too many open.

You may also want to collect links and have them in a word document so that you can post them during the day. It would be best for speakers to have a window open to their website as well. I highly recommend going to summize now and seeing how previous conversations with hashtags flow to get a feel for it.

I will be tweeting the prizes throughout the day and linking to the blog post so members can know what they are tweeting for as a prize. Please also note the prizes that are only open to US members of twitter and then those that can be shipped to Canada, as well as the ones available for International users.

The times listed are the starting times for the panel, since there are several for each timeslot and I have numerous prizes to give away the time is longer than one hour for them. The morning and evening time will be the longest time periods.


9AM PST

http://www.twitter.com/modelmekids - Sue on social skills, video modeling
http://www.modelmekids.com
http://modelmekids.ning.com

http://www.twitter.com/swingsetmamas - Marlowe on music, Nat'l Inclusion
http://www.swingsetmamas.com
facebook group

http://www.twitter.com/CARDtherapy - Sue will be discussing therapeutic riding
http://www.card.ca/
Community Association for Riding for the Disabled - Toronto


10AM PST

http://twitter.com/susangiurleo - Susan on executive functioning, parent coaching
http://www.childdevelopmentpartners.com/

12:30PM PST

http://twitter.com/AdvancedBrain - Auditory Processing
http://twitter.com/AlexDoman - (CEO of Co.) brain training, memory
http://www.advancedbrain.com/
http://www.abtmedia.com/

http://twitter.com/childrenscare - Jeff on ABA, w/Bd Certified therapists
http://cchs.org/blog/

http://www.twitter.com/specialedsolved - Catherine Whitcher, M.Ed, - on special education and IEP issues
http://www.precisioneducation.com/


8:00PM PST

http://twitter.com/nbeurkens - Nicole is an Autism Specialist
http://www.horizonsdrc.com/

http://twitter.com/Dianne_ - Dianne on Early Intervention, location Australia
http://www.aspireearlyintervention.com/

http://twitter.com/MMiller20910 - Mark on Therapy Dogs
http://specialneeds08.blogspot.com/
facebook page

Kay and Flo - Autistic Twin Savants

These twin savant sisters were profiled on Discovery Health. Today (11/9/08) at 9:00 AM was the last airing for this tv special. I really enjoyed learning about these women who also were born in New Jersey, a few years prior to me in 1956. They have led an interesting life. They can recall day and dates before and after they were born and need to chart and document shows as part of their daily routine.

They have idolized Dick Clark for 25 years, meeting him two times with thirteen years between these meetings. I liked how a news anchor (Dave Wagner) became a family friend for the past twenty years after they called him up and grilled him on a number of topics. My 13 year old son on the spectrum viewed this with me. I told him these women were his google, all he had to do was ask them data for his research. Prior to being a news anchor he was a disc jockey.

A few things that Kay and Flo charted were the entire episodes of $100,000 pyramid and the clothing the anchor and his family members wore. This kept their day structured and one of the autism experts in savant studies said this was typical behavior for savants.

Extraordinary People aired in the UK, July of 2008. Here is a photo of Flo and Kay Lyman. A synopsis of the UK show.

One of the major networks needs to interview Kay and Flo and share their story in more depth so that more families can gain insights and also for services and help for these women. A UK review of Rainman Twins.

The Application of Savant and Splinter Skills in the Autistic Population Through an Educational Curriculum - Results of a Case Study Research Project from Wisconsin Medical Society.

Kay and Flo described themselves as human computers. They dressed alike, hardly showed any eye contact, were excited to get their hair done at a salon, went to NY to see Dick Clark in 2006 for his return to the Rockin' New Years Eve. They said they want to be buried with all their Dick Clark memorabilia. They stated that Dick Clark was like a father figure they never had.

I am hoping to see more coverage on these amazing women. A google search does not provide much, which is a shame considering their age and uniqueness being autistic twin savants.

Articles and Reviews pertaining to Sensory Processing Disorder

In honor of Sensory Processing Disorder month I am listing all the articles and reviews I have done on this issue. My now 12 year old nonverbal son Matthew has never officially been diagnosed with Sensory Processing Disorder, but it is apparent to all who know and work with him that there are serious sensory issues going on with him.

I recently viewed this Sensory Integration Strategies DVD that runs for under thirty minutes. This was a good refresher for those who have been dealing with Sensory Processing Disorder or Sensory Integration Therapy, plus a nice starter on the senses and nervous system. I even shared this morning while waiting for the bus with the aide some of the tips mentioned for the classroom. I specifically suggested having my son move the chairs around in the morning and afternoon and giving him jobs in the classroom. I believe the Horticulture and PE classes are giving him sensory input already.

Another DVD that gives people insights is Through the eyes of Autism. The viewer will feel their senses heightened while sitting through this quick clip. It really puts things in perspective for parents, siblings and professionals learning about autism. Calm Baby Video is very soothing and pleasing to the senses. A good contrast to the other movie to relax, unwind and take a nap.

OT for children with autism is a wonderful DVD that shows firsthand what occurs during Occupational Therapy. There are several children receiving services for different issues that are explained and discussed. This is good for any newly diagnosed family contemplating OT and wanting to know more about it.

Earlier in the year I took part in an ICDL conference from Dr. Stanley Greenspan with the post conference with Rosemary White. I wrote out my notes and other information with resources in an article entitled Sensory Disorders. The items we have had in our house to assist with Sensory Issues include the Intex Jumpolene, Animal Alley Arby Dog and the Quiet Quilt.

My household has experienced firsthand and for the most part learned to deal with a screaming child inside a store,Daily Activities,Self Regulation and the Summertime Blues. The parent training I attended for Floor Time Basics was very beneficial.

There is a social network to discuss and meet other families living with Autism and Sensory Disorders, plus another useful group Model Me Kids to share experiences. Sometimes I will reflect back to 2000 when I wrote about Sensory Integration Dysfunction and recall what my children were like at that time. It is a great reminder of the earlier years with fond memories to note.

I have more DVDs and books in my library at home that are specifically on Sensory Processing Disorders. Sign up for my newsletter at BellaOnline to be informed of new articles.

Improving Speech and Eating Skills in Children with Autism Spectrum Disorders. This book teaches you how to implement an Oral-Motor program for home and school.

Sensory Rich Activities is an ebook from Lil Angel Gifts that gives an overview with recipes and tips.

Sensory Nanny Radio Show

Kia at Good Enough Mama is giving away five copies of Meghan's World, which is a book on SPD. This ends on October 30th with the winner announced on Halloween

Introducing Pecs Club Ning Group

I created MakingPECSCards yahoo group in January of 2004. Initially I wanted to start a Pecs Club where people meet at a location to share and create picture cards. Today I established a Ninggroup that is called Pecs Club. This is an extension of the Yahoo group and a way to meet other parents and professionals that utilize picture cards, schedule boards and pecs with those on the autism spectrum and other related disabilities.

There are now over 515 members in the group. I have kept out spam with approval of all new members. There is a mix of members that covers professionals in the field, therapists, teachers, parents and assistants. There are issues with email bounces at Yahoo and it is hard to utilize a search for older groups.

I have joined and taken part in almost a dozen Ning groups and like that members can create groups, join groups, share photos, videos and blog posts while meeting new people who share similar interests and family issues.

This will be an easy way to share picture cards, get feedback on picture cards and schedule boards, gain insights into IEP goals and learn about other communication devices, who funds these and what is appropriate for a nonverbal child, teen and adult.

If you are new to picture cards, not sure what a communication device is, need help in acquiring cards, just got a diagnosis or have a child with a speech delay you are more than welcome to join the Pecs Club Ning Group. This invite is also open to professionals who work at various companies or organiztions. Teachers, therapists and those who supoort and assist those in the school setting are more than welcome.

I look forward to this being a successful group. I am not looking for it to be the most popular or getting a large membership. I am hoping for active participation, especially since the school year is now in full swing and we all need support, feedback, guidance and asistance.

Feel free to tell others who have kids with special needs that are nonverbal, have a speech delay, use devices, picture cards or wanting to learn to teach their student or child.

Share pictures of your kids with their picture cards and showcase the schedule boards and activity cards. Tell others how you laminate the cards, which size cards so you prefer, have you ever used black and white line drawings, which side of the velcro do you attach to the card?

First Month of School Update

This first week of October 2008 marks the first month for my nonverbal son Matthew in Middle School as a sixth grader. He has had many adjustments this school year - wearing a uniform, taking the bus, longer school hours, PE uniform, new school, new teacher, new classmates, no recess, nutrition, shared bathroom, horticulture, gardening, new classroom and new therapists.

Previously he was in the same class for four years at the Elementary School. The same teacher, classroom and classmates. The first three years he had the same OT, Speech and Adaptive PE teacher.

Matthew has adjusted well to the early morning alarm and wearing the school uniform that consists of a white polo shirt and navy blue pants or shorts. The PE uniform is a white logo shirt from the school and royal blue shorts. I need to get royal blue pants soon since the weather here in Los Angeles changes daily. This past week we hit 100 one day with the last day of the week at 74 as the high, when it was the low the other morning.

We wait at the gate at the front walkway for his assistant to come. He has to park on another street and on Thursday and Friday it is hard to find spots due to street cleaning. The bus is here before 7 AM. Matthew is happy to see his aide and get on the bus.

The bus returns with Matthew and aide before 4PM. Matthew has his regular movements he makes before going inside the house. He likes to run through the yard, scaring all the cats that might have been resting there, then he peaks around the corner at the back porch, looks under a window in the living room and the other side before going into the house.

At first he would run in the house and change into the clothes I had laid out on the bed for him. Now he wants me inside too. So I am talking with the aide through the screen door as he stands in the yard.

On Fridays they place the PE clothes in backpacks for washing. I bought two PE shirts and place the second one in there and rinse the shorts and shirt. I made the mistake of doing them both at the same time. We do not have laundry facility at this rental house and I am not about to take two kids to laundromat on a weekend.

On Friday afternoons after I have unloaded the lunch bag and put in the snacks for nutrition I place it in another room along with the backpack. This is the visual for Matthew to know there is no school the following day. Sunday afternoons I get both bags out and keep in the kitchen for Matthew to get back in school mode. I also get out the juice boxes and lock and lock container for his lunch and keep on counter.

I received feedback from the aide that Matthew runs many laps around the track for PE. This is a class that has general education students and one of two classes that is mainstreamed or known as inclusion in some areas. Physical Education is after lunch and these shirts smell bad. There are a total of four kids in the Mental Retardation Severe (MRS) class that Matthew is in. The two girls go to the locker room with the female classroom aide. That leaves Matthew and another boy in the classroom to get dressed. The teacher has been in the same room for 17 years and this is normal procedure.

During back to school night I saw the section where the gym clothes were hung and saw the other boy already has his pants there. There are so many rules on what is allowed at school that I asked the aide about deodorant and he said the other boy does not use it (he is older than Matt) but that he would try it. I really wanted a solid, even though my other son Nicholas uses stick. The only product with no Aluminum was Tom's stick deodorant. That is now kept in the backpack with extra socks, school bus book, brush, lip balm and aveeno lotion.

The aide has relayed to me that Matthew picks up his arms and allows the back and forth motion of sliding on the stick deodorant. I could tell a difference in the smell of his shirt today as well.

I noticed today as they got off the bus Matthew was waving bye to others on the bus. This is progress. He waves to me at the computer, which is located in the kitchen, when he wants me to pour or open something.

The aide was hired specifically to follow Matthew to Middle School and High School. He started in February at the Elementary School. There they went to the Nurse's office to change diaper. Here they go to a building that has restrooms that is located next to their classroom building. The classroom opens onto the outside, but there is a fence there to keep inside the school premises. At the Elementary School the class opened up to the playground. Many times when I picked him up at the classroom there would be chairs stacked at the door to prevent opening the door and leaving.

Matthew's aide is very observant and attentive to Matthew's needs. Earlier this week he asked me how Matthew lets me know he needs a diaper change. I indicated that he gets one out with the plastic bag and wipes and keeps on dresser. When it needs changing he gets out the newspaper on the floor and that means now is the time.

I let the aide know that during the six weeks of summer camp Matthew would grab a diaper and let them know it was changing time. Each camper had a cubby hole and that was where his items were kept. I asked the aide if the diapers were visible and he said they were kept in a cabinet with gloves, bag and wipes. I suggested taking the bag and hanging it someplace in classroom and maybe they could take a photo of it for the communication device he has known as the Go Talk 9+ that I purchased in March.

We also decided that since Matthew was not really hip to drinking from the school water fountain, (and who could blame him), that I would fill one of the Rubber Maid plastic juice containers with bottle water and the other one with either soymilk or rice drink.

The last few days Matthew has taken many sips of the water from the container at both Nutrition and Lunch times. This is progress. I mentioned to the aide that I was thinking of expanding Matthew's drink options to include Almond Milk. He said he has tried it since his Mother drinks that and soy milk. Nice to know the aide is aware of these products.

The other day when the aide was asking me about toilet training and saying he wanted to learn more to be better, I told him that I have plenty of books. He is very eager to gain insights into autism and Matthew. He really wanted to observe a day at the summer camp but was busy doing the summer school in another part of Los Angeles and could not get it into his schedule.

I placed some extra pecs boards for scheduling in the backpack the other day suggesting maybe the Teacher wanted to utilize them. The aide told me that the Teacher was interested in them and was going through his supplies to see what he had. They also started a list for taking pics of various things for Matthew's school day. My other son Nicholas is the voice on the output device.

I was surprised to learn the the Elementary School Teacher threw out many of her pecs supplies and gave a bunch to the aide. He was going to go through them this weekend to see what he could bring to school. Why would a teacher toss out these supplies instead of saving them, sending them to speech department or giving to parents, that makes no sense.

The aide is also working on getting Matthew lunch through the school. There does not seem to be a menu for parents, but the school personnel has access in the morning to this. He wants to know ahead of time as well what they are serving. I did not want to fill out the lunch program form that requires income and SSI number to be sent to the school. We do not qualify for lunch program. I just wanted to know the price and system for my son to get lunch the days they have burgers and pizza. The lunch program participants get tickets. The aide needs to pay $1.50 for Matthew to get lunch. I let him know that he can let other kids eat what Matthew does not or to put in the classroom refrigerator. Since they have juice I asked about getting that for Matthew as an alternate drink option.

Back to school night we were able to sit in the classroom and speak with the teacher. At one point Matthew lunged at me, but the teacher told him to fold or hold his hands and that is what he did. We went through the hallways to find the Horticulture class and met the teacher. She showed us the area they do gardening in. She said the kids are good with Matthew and his classmates and are used to special ed students. We saw one kid with a walker and a few with canes walking with their families. Even my son Nicholas said he liked the school. This kid was very verbal about how much he hated Matthew's last school as kids were running all over and it seemed chaotic and uncontrolled if we were still there when bell rang. We always went fifteen minutes earlier and signed Matthew out to avoid that nightmare.

I did get some feedback from the teacher that the Speech Therapist has a full load and as she is removing students she will start with Matthew. I will wait awhile before filing a State Complaint. We already have one year of compensation for speech services.

One day the aide and I spoke about the OT and what type of questions she was asking him and the teacher. He was able to tell her what Matthew did last year in Elementary School. I also asked him to compare the school settings and tell me what he thought. I also indicated I wanted him at the IEP meeting next year.

It is really good to have a positive vibe from the aide. This helps everyone tremendously. The atmosphere is calm, my son is getting more attention since prior there were 8 or 9 students and several aides. Matthew will not get on the bus without knowing his aide is behind him on the steps. They have formed a good, strong bond.

The first month is a positive one. The teacher is receptive to my Daily Report form filling it out almost everyday and only missing two times, one of them being today.

My other son Nicholas is in his second year of California Virtual Academy (CAVA), now as a seventh grader. The first week of school his teacher came for us to fill out the Master Agreement only to get notice that Saturday morning that she quit Friday for a position in another school district. We just met new teacher a week ago for home visit and testing.

Previously art and music were elective subjects you did not have to partake in. This year CAVA changed that, but you could choose either Music or Foreign Language, so Nicholas is now taking Spanish and enjoying art. He is also doing good in study island.

The community day is on Tuesdays, which is also the early release day in LAUSD for teacher meetings so the time frame is not in our favor to make it home in time to meet the bus. I promised Nicholas we would visit the Zoo more often and perhaps bowling. I am looking into going to the Zoo next week. He is enjoying shows on History Channel and likes visiting their website and Animal Planet. He has taken an interest in Star Wars and moving beyond just animals as his interest.

September was good for both kids. I am hoping October will be just as good and maybe even better.

Concerned about Horticulture and Adaptive PE classes

My nonverbal son Matthew is in the sixth grade at a Middle School taking the bus for the first year ever with his male assistant. They are in a MRS class, which is Mental Retardation Severe. There is a total of four kids, started out as six, some rearranging took place the first few days of school. There is also a Mental Retardation Moderate class (MRM).

The third period class is Horticulture, which is in a general education class so they are mainstreamed with that class, some use term inclusion, depends on where you live and what State. I use the term Special Ed but others use self-contained class. I have only heard that term used in other blogs and online, not within the Los Angeles Unified School District, also known as LAUSD.

This is also a first for wearing a school uniform, which is white polo shirt and navy blue pants, so far shorts is what Matthew has worn to school. Today the temperature was 90. For Physical Education (Adaptive PE) the uniform is royal blue shorts (shiny kind with string) with a white t-shirt that has school logo. The shirt is to be tucked in, not working for Matthew and aide just lets him wear it out, thankfully this is not an issue.

Matthew's white shirt is quite dirty on the days that they go outside to pull weeds and whatever it is they do in Horticulture. One day his hands were really dirty upon arriving home as well as his blue shorts and white sneakers. So now they know how hard it is to get Matthew cleaned up and might be lenient on days he arrives dirty after I have cleaned him up and missed a spot or he touches something outside before the bus comes.

PE is at fifth period toward the end of the day about 1PM. I had concerns about this being outside during the heat of the day and even mentioned this on the phone to people within the school district. I suggested contacting the health department to make a complaint. I do have an option of getting a letter from Doctor to restrict Matthew's PE participation and requesting an amended IEP.

The problem is that Matthew really needs and benefits from the physical aspect of PE. Plus the fact that it is at the end of the day and I thought the positive from this would be to wear him out, no such luck thus far. He does go to bed by 7:30 PM thanks to his medication and giving his dosage at 5PM. Matthew takes Geodon, which is an anti-psychotic.

He has been doing laps as soon as they get to the track and his aide has a hard time keeping up with him. He does not want Matthew to get in the habit of just running around the track. He does take breaks after laps and they sit down for about fifteen minutes after that. He will not drink water and I am worried about what condition he is in after doing the laps. His aide did take a picture and showed me Matt on the track.

The good news is that he is not going into the locker room to get dressed. The boys get dressed in the classroom and the two girls go into the locker room. This is how the teacher has handled dressing in years past, he has twenty years at this school and 17 in the same classroom.

The aide has told me that there are three other general education classes out there at the same time. They all seem to stay clear of Matthew, but today Matthew went in the other direction while the other classes were jogging.

I gave the aide a plastic water squirt bottle to put water in and squirt Matthew when he gets too hot. I did this in the summer time and also to slick his hair back. I want him to drink water and learn to use the fountain or bring water bottle for him to drink. He has taken sips here and there over the years, but mainly just drinks rice drink or soymilk.

I do not want my son to collapse and wonder what type of feedback or advice I can give the aide. I will meet the teacher on Thursday for back to school nite, which I just learned about today and they get out early on Friday because of that. I have yet to receive a notice from school on either of these happenings. I am assuming due to the California budget crisis and no money coming to schools that this is the reason they are out early on Friday. Several years ago Matthew was hospitalized for dehydration since he would not drink anything when he was sick and needed IV. He was also anemic and malnourished when younger due to feeding issues.

The aide tells me that Matthew's face is a bit flushed and not too sweaty, I may need a pic to see this firsthand or somehow sneak on campus to find out. Today in Horticulture they were in the general education classroom doing some writing and Matthew did not want to and tipped over the desk and banged somethings around. He then removed Matthew from classroom. There was no mention of this incident in the teacher communication sheet. Other days the teacher has mentioned Matthew had a timeout so I asked the aide what that meant and what a timeout was. He said the teacher sits next to Matthew.

At the elementary school they made the kids stand there with hands behind back and then other times put head on desk. I need to find some clarity on these at the back to school night. When they did art at the Elementary school they went to the class next door that also had a door to get back into the class. Matt did well there and with music that was with general education classes.

I also need to get the schedule and get some more information on why the special education kids on buses do not get to eat breakfast and have to wait by bus for fifteen minutes.

Does your child take Horticulture and know more about this type of class? Any feedback on the PE issue with Matthew doing seven laps. I think to limit him now would be hard since he has been doing this for over a week now.

Halloween Experiences for those on the Autism Spectrum

Halloween is just around the corner. Stores have had costumes stocked for a few weeks now. With school back in session students will be discussing which characters they will be wearing as a costume or if you are The Sewing Mom you are making costumes.

I have one article on my site for Halloween, which I did three years ago. I want to have more options available for readers to gain insights into the Halloween Experience for the child on the autism spectrum.

My 12 and 13 year old do not participate in Halloween. Their Elementary Schools had parades. I would pick up Matthew early and he would wear regular clothes to school. Now that he is in Middle School I am not sure what the procedure is for this Holiday in terms of wearing the uniform to school or allowing a costume. Nicholas is homeschooled with California Virtual Academy so he will be home.

I am looking for input from families that have had past experiences with their child on the autism spectrum by wearing a costume to school, participating in a party at class or elsewhere, and also those that have parties in their home and take their kids out for trick or treating.

If you have blogged about it and interested in sharing your link please post it in the comments. If you want to create a blog post please let me know your website address so I can follow when it gets posted. If you are planning already for this year you can also comment here about the preparations and let me know if this is something I can include in my article.

As an example I can just say that a Mom in NY to a 4 year old boy did this and that. If you want me to link to your blog please indicate that as well. I would like to have an article helping new families gain insights from other families on what type of costumes kids can handle, how long they last outside doing the visiting of homes, what about barking dogs, diet issues for treats and parties and sensory issues with the costumes and makeup, etc. If there is a certain book, CD or DVD you have used to help prepare for Halloween, please share. I have reviewed a few Winnie the Pooh ones and curious to know if any exist specifically for those on the autism spectrum.

I am looking forward to hearing from other autism families on their experiences sine we just bypass the Holiday and wait for November to show up. If you have any recipes or blog post on gluten casein free treats please share those here.

PE Activities for Homeschoolers

My 13 year old son who is high functioning on the autism spectrum is in seventh grade. We are utilizing California Virtual Academy, known as CAVA and utilizes K12 curriculum. This is our second year with CAVA. Prior to this Nicholas was in Elementary School in general education with just RSP consult with teacher.

We are doing CAVA for the Middle School years since it is our hope that he will get accepted into The Los Angeles Zoo High School Magnet, although it is College Prep. He wants to work at the Zoo and looking forward to reaching the age you are allowed to volunteer.

This year we will be visiting the Zoo on a monthly basis. I hope to get him a nice camera to take photos like animal photographers do out in the wild. He also likes to visit animal sanctuary websites and Humane society sites. His two main interests are Dinosuars and Cats - big and little cats. He did a report last year on Jaguars that he is very proud of.

The focus of this post is on PE Activities. CAVA has a form parents need to fill out and turn in each quarter, know as the Physical Education Activity Log. Students are required to complete an average of twenty (20) minutes each day. The teaching adult is responsible for completing and submitting the log.

These are activities that are structured, organized and supervised, like participating in an athletic class, dance class or sports team. Activities like bicycling, hiking, jogging or calisthenics are listed as examples.

We have an Exercise Bike from Sears that Nicholas started using last year, but with the September heat here in Los Angeles that is not comfortable. There is also yard work that is done once a week using the Craftsman Reel Mower. I cannot get him motivated to go down to the lake for a few laps, which is what we did last year on the way back from dropping Matthew off at school.

This year the bus picks up Matthew so we can go before 7:30 AM, but many bring their dogs and he is afraid of many of them. There is also a stench down there from the trash and the birds, etc. I had to put my membership with 24 Hour Fitness on hold due to the cost not within my budget at this time.

He is not interested in sports at all. I thought maybe some sort of DVD showing kids exercising might be good to alternate between the bike, outside and walking. I am looking for feedback from other homeschooling families on how they incorporate PE into their daily routine. Also ideas from other autism families on what types of exercise their young teenagers participate in, sports and extra curricular activities.

I would like to do an article on my autism site on the topic of PE and sports. It is a topic I have little experience with my boys and would like links to reviews on DVDs for all age groups and posts from blogs on this topic to include for resources within the article.

At summer camp this year Matthew's class went to the high school and ran around the track. The teacher mentioned to me how fast he was and wanted to know if I was looking into Special Olympics. Than the other day at school Matthew's assistant took pictures of him on the track and said he was really good and mentioned Special Olympics.

Nicholas has a friend from summer camp who swims and is in Special Olympics. Anyone who has a kid in the Special Olympics and has written about the experience is welcome to send me or post the link so I can add that to my article. I was already looking into the Parks and Recreation Services here in Los Angeles. Matthew already has a long day with bus time, so I need to see about weekend offerings in the area. We would probably need someone to assist and that would be through the Regional Center, but with California in a Budget Crisis and funding non existent that is highly unlikely.

Reminder - if you have any input to add about PE activities for homeschoolers or specifically for a kid (tween, teenager) on the autism spectrum, please leave a comment with details, link to post, blog, etc. I am working on an article and will include your link and also feedback for Special Olympics would be helpful as well.

Housing Options for Autism Families

I enjoy watching House Hunters on HGTV, which airs nightly at 10 PM. Sometimes my 13 year old son Nicholas catches the show as well. We have dreams of moving out of this duplex house we have now rented for over ten years. I regularly peruse Cragislist, Westside Rentals and Mobile Home Village to check new listings.

We cannot live in an apartment or condo. That would mean four neighbors to deal with and having to endure listening to Matthew running across the rooms, banging walls and screaming. Amenities like pool, fireplace, deck, patio and french doors would have to be avoided.

I need to have parking, tired of the street hassles for a space near the house. An on-site laundry room or at least a hook-up would be necessary. Trying to deal with laundry during school holiday times and vacations are not easy. Due to my skin issues with my severe eczema it is essential that I get a dishwasher. Also the bathroom must have a window and fan vent. This will help when giving Matthew baths and starting the toilet training.

We also need a fenced yard and preferably central air conditioning. For many years now I have paid a rental fee to my landlord for the stove and refrigerator, probably paying for appliances two times during this period. I would like a shower that has the sliding door and a garbage disposal for the kitchen sink.

The neighbors next door have their grown sons living theere for many years. It is like a pot festival coming through my windows. Today when the bus arrived my front yard was a stench bucket from them. Earlier in the day our kitchen had smells from the other neighbor. My son Nicholas had problems with his eyes and throat.

I am tired of living at this dump, but there are not many options for us. I also want to try to buy a mobile home by the time I am 50, which is under two years. It is a long term goal that most likely will not get met, but a dream nonetheless.

Nicholas has a dream of living in his own apartment with his cat Junior and another companion animal. He wants to drive a truck and not get married or have kids. I am trying to teach him about finances and what a struggle it is to pay bills and have anything left over.

It would be nice someday to share a house with another autism family and have the street or community consist of families with kids who have special needs. Safety for everyone and living where neighbors know what your life is like and can offer support in many ways.