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.

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.

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.

Some New Skills For My Autistic Son

We are wrapping up spring break for my son Matthew while my other son Nicholas has been on his spring break from California Virtual Academy since Friday. As I mentioned in recent articles Matthew has been in good moods lately and not having serious behavior issues.

I wanted to make note of some new skills he has shown this past week. Normally when Matthew comes home from school he will just leave his jacket somewhere in the living room on his way to the bedroom to remove his sneakers. He will place the sneakers in the crate where shoes are stored. Next he goes through his backpack for homework.

While we went on some errands this past week Matthew removed his coat and then proceeded to fix the arms so they were not inside out. He left the jacket on the bed instead of the floor.

The weather here has been mixed with one day wearing short sleeves and no jacket, but then the following day needing a jacket. I had asked Matthew to get his jacket. He brought me his heavier jacket so I told him that was not the right one. A few seconds later he was in front of me with the same jacket along with a hanger. I was impressed since it is hard for him to reach the bar with the hangers.

When I ask Matthew to remove his socks he will just take them off and leave them there on the floor inside out. This week he sat there and fixed them by inserting his hand in and pulling the sock out. This is much better than a rolled ball of socks on the floor.

I usually give him his meds around 5:15 so that he is asleep between 7:00 and 7:30 pm. On spring break I wanted to sleep in a little so I gave him his meds later, one day by even an hour. He still wanted to go to bed at the same time. He knows what show is on Noggin when he is in bed, so there was no escaping the usual bedtime.

He has two bottom corner teeth coming in, which appears to be bothering him as he is putting his hand in his mouth to touch them. He now is going to the mirror in the kitchen and regularly looking at himself. I have never seen him do this before and not even Nicholas who is 14 does this. It is funny to see Matt look in the mirror, open his mouth and look inside. Plus he is touching his hair and smiling or laughing at the mirror. He seems like a young teen checking himself out.

While at the grocery store he chose a box of unsalted saltines. I figured if he was not interested in eating them they were good for soup for me and Nicholas. Turns out Matthew likes the saltines and handed me the last package from the box this morning to put into a baggie so he can have some throughout the day.

Matthew will turn 13 on June 30th. He loves to look through photo albums.

Comparing Differences Between Verbal and HFA Sons

My two sons are on opposite ends of the autism spectrum with totally different personalities. They both are in Middle School. One is homeschooled with the other in special education. One is verbal and one is not.

My son Matthew is 12, in special ed with an aide. He is nonverbal, not toilet trained, drinks only rice milk and has a limited diet. He is on an anti psychotic called Geodon. He gives good eye contact, screams and yells a lot and bangs the walls constantly. His finger prints and marks are evidenced on the white walls. He is a sensory seeker, loves to play with strings, belts and ribbons. You can hear him a block away.

My son Nicholas is almost 14, homeschooled, obsessed with the cat and perseverates on animals. He is high functioning with some social deficits and going through the puberty stage with his voice cracking and catching up to me in height.

These are the obvious differences, but in the home there are some that might surprise the average person. The computer is in the kitchen giving me an open walkway to the living room to see where Matt is, plus the bedroom is off to the right before the table here so he goes in and out there.

He follows me around the kitchen - I cannot sneak anything out of the refrigerator without him noticing and looking in my direction. He is fascinated with the whip cream can that I use to spray into my mouth at times. No one else in the house uses the whip cream but me for my hot cocoa or ice cream. I have to open my mouth so he can see what is happening. The same is true when I remove my dentures to clean them and he all of a sudden is at my shoulder trying to get a glimpse of my mouth.

He helps out quite often in the kitchen. He will stock the rice drink containers in the cabinet, pull apart the string cheese and place on shelf, he will get out the butter and salt when requested and can distinguish between maple and chocolate syrup. He will put away the egg carton and when done eating his fast food fries will shake out the paper bag into the garbage before disposing of bag in the paper bag for recycling can outside.

If he uses the last paper towel he will toss the cardboard roll into paper bag and retrieve another roll from under the sink. If he cannot open it he will hand it to me. Nicholas will toss out the empty roll but not attempt to get a new one out for the next person. Nick will not tear the string cheese apart but lay it on the shelf. Nick still gets confused between two paper bags in house in opposite spots. One is for the recycle bin and the other is to take to get money for recycling since we pay a fee at the store for these.

Matthew gets five cases per month of Huggies Goodnites. They are delivered and left in the living room and we bring them into the kitchen. Matthew will carry a box and drop it on the floor or on island table and try to open it. He will hand me each diaper bag to place in a top cabinet where I stand on foot ladder. He helps in tearing down boxes.

Sometimes during the day while I am cooking I will forget it is Nick and ask for things and he is not receptive, plus usually either doing school work or playing with the cat.

Matthew knows where everything is in the house. Each morning I ask for a washcloth to wipe his face and hands before we leave to go wait for bus. He will put videos and books back where they originated. He is all about order and very organized. He drops the jacket down as he enters the house, goes in bedroom and removes his shoes and puts back in spot, grabs out his homework and gets a crayon to scribble on homework page before handing back to me to place in backpack.

I need to teach him to remove his socks the correct way and not inside out. His aide is working on teaching him how to zip his jacket and we discussed tying shoes this morning.

These are just somethings that make them unique in their own way.

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.

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.

A BidetSpa is what this Autism Family needs

I was very excited to read a blog post on a new bidet toilet seat that was being utilized by a special needs girl in the same age range as my nonverbal autistic son Matthew. I have wanted a bidet for years and have researched styles and brands often. My favorites folder has several saved from various searches.

The one and only time I have ever seen a bidet toilet was during my high school years back in New Jersey. A friend had a modern white house with an intercom system, a button to call the fire department, (which I did by accident once) and the bidet in a large bathroom.

Since my adult years I have been plagued with Hemorrhoids. My Mother mentioned to me long ago she had them, so this might be another hereditary thing that passed on to me like the asthma and eczema I have been plagued with my whole life.

In fact, several years ago I had contact with my first husband (86-89) for some reason I cannot recall, and the first thing he asked me, (with his brother on the other phone) was if I still had Hemorrhoids. That was a reminder to me of why I left him in the first place, very childish. Who wants to be remembered for their Hemorrhoids? The horror of it all. I learned earlier this year that he passed away a year ago in a car accident.

My nonverbal son Matthew is on the autism spectrum and has sensory issues as well. He has had two solid bowel movements in his twelve years that I can recall. The first one was the day he went on Ensure Plus from regular milk. The second time was the first day he started taking Risperdal. This was in 2003 when the antipsychotic was prescribed only for Schizophrenia treatment and has since added autistic disorder. Their father suffers from Paranoid Schizophrena. I have sole physical and legal custody. All my family is in New Jersey and we are in California. I am the home health care worker for my son Matthew through the State of California. (IHSS)

Matthew liked the Ensure Pudding and moved on to soy yogurt for a few years and now has regular vanilla pudding or french pudding yogurt once in awhile in his lunch at school. He also tried the Naturade Total Soy drink supplement before just drinking regular soymilk and rice drink. I have been toying with the idea of adding Almond Milk to his diet.

Matthew has been wearing the Huggies GoodNites for many years now. Insurance covers five cases per month.

We have been living in a duplex for ten years now with one bathroom. There is a small window that opens out to the neighbors driveway and entrance gate to their house. The venilation fan stopped working last summer and I have an oscillating tower fan hooked up to an extension cord under a rug to the outlet. With the addition of the feral cat from outside who broke his leg one year ago, his litter box is now in the bathroom as well.

This is one of the hottest rooms in the house and unbearable for me with my severe eczema. I am regularly prescribed Prednisone and have even received a shot of cortisone in the ER a few years ago and earlier this year at a clinic. The side effects are depression, mood swings, personality changes, weight gain and vision issues. I have been through all these side effects, with vision problems now surfacing. I recently learned my Mother had cataracts, so that might be next for me.

I am a single mother to two boys on opposite ends of the autism spectrum. They are fifteen months apart at 12 and 13. I homeschool Nicholas who is now in seventh grade. Matthew just started Middle School, takes the bus with his male aide. He is in a MRS class, which means Mental Retardation Severe. He never received speech therapy last year due to shortage within LAUSD and now he is on wait list at his present school. He also receives Adaptive PE and Occupational Therapy. There was feeding therapy for five years and one year of Floortime in the home.

Matthew has several diaper changes a day, sometimes as often as every half hour. I mentioned earlier he has had two solid bowel movements. It is very rare for a diaper to be filled with just urine. I would characterize the diaper contents similar to creamy peanut butter.

Due to my severe eczema I can only use one kind of baby wipes, since the others have ingredients that burn my hands. I cannot wear any type of glove beside cotton gloves, (due to a latex allergy) that I have purchased in the past by the dozen on ebay and currently at Walgreens for five dollars a pair. I hardly use detergent at the laundromat due to my sensitivities, nor do I use dryer sheets, bleach or softener. The cotton gloves do not last long and my son has had many rashes.

With a BidetSpa I would get the relief needed from the posterior wash and the feminine wash while my son will get a more thorough cleaning without having to endure wipes, Baby Powder and rash cream. He is in Middle School and in Physical Education, doing laps around the track while wearing a diaper. I cannot do this alone and have purchased The Potty Journey and Toilet Training for Individuals with Autism books for guidance.

With the addition of the BidetSpa we would save money on purchasing all the extras, my skin would not have to endure a hot bathroom and Matthew would be cleaner with less irritation. This is the one component we need to start toilet training and would be a blessing for all of us.

Just last year we got a new toilet seat and a few days ago a new flapper for the toilet since it broke in half before Matthew got home and the landlord was next door working - perfect timing for once. We would love the remote control, if that is included in the giveaway. The automatic deodorizer sounds like a dream for us and the bathroom. All the features including the soft lid are appealing to this autism family household. My 13 year old would even share his opinion in a review posted here on the blog and another more extensive one at the Autism Spectrum Disorders site and we may even be able to get the product added to the Epinions site.

The BidetSpa features include a Urine Spray Guard and an Occupie Seat Sensor, which means it will only work when someone is sitting on it and not from pushing buttons.

This family will be a happy CleanButt family. I already ordered the Free 8 minute DVD to learn more about their product. Please keep your fingers crossed that we win the giveaway, and if you are in the Los Angeles area you may come over and test it out, when Matthew is in school.

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.

Child with Autism Gaining Independence

My nonverbal son Matthew just finished his first full week of sixth grade at a Middle School. The prior week school officially started on Wednesday. The bus is here most mornings before 7 AM and gets him home before 4 PM. With Matthew it is not possible to try on clothes without actually wearing them that day. Since he has to now wear a uniform I was concerned with how he would tolerate wearing white polo shirts that are tight at the cuff on the arm and the buttons on the neck with the color. He has only worn a full button-down shirt once and that was on graduation day at Elementary School this past June. That outfit he wore was the same one Nicholas wore the year before at his Elementary School graduation. That outfit is ready to retire from the closet altogether.

Over the summer I had purchased three white shirts at Jiffy Shirts with great results as they arrived the following day. I also bought three shirts at www.walmart.com to have different options of shirts for Matthew. One was tagless and the other brand I cut out the tags.

The night before school as I had prepared clothes for the first day I decided to try a shirt on Matthew. He was pulling at the collar and not wanting me to do the bottom button. I had two navy blue shorts ready for the next morning. He has been wearing pants and shorts that have the string attached, which is his stim most often to play with the strings.

On the first day of school the shirt was successful but the shorts were another story. He was pulling them all the way up, reminding me of an old Jerry Lewis comedy movie. The two shorts were not working so I went into the laundry basket for the last pair of blue shorts, spritzed some Air Therapy Orange Spray on them to get a fresh smell and they seemed to work.

I have had a pair of his string shorts and loose tshirt on the bed waiting for him when he gets home. When Matthew and his assistant get off the bus I let Mattthew inside so I can hear about the schoolday from the aide. He is usually carrying Matthew's backpack and lunchbag. Sometimes Matthew comes back to the front door to get these bags and bring into the kitchen. A few times Matthew has only had on his shorts and the rest another shirt. His aide was even impressed with how fast Matthew was able to change his clothes.

This is a new skill for Matthew since in the morning he needs a diaper change and gets dressed with assistance from me. Two times my son Nicholas has had to help him get the shirt on. The pants and shirt have been on the correct way as well.

I come into the house to see Matthew getting a bowl out of the cabinet and putting pretzels into it. When he was at Elementary School I picked him up at his classroom everyday and had a baggie of Gluten Free Pretzels for him to eat on the way to the car and during the drive home. The first year I was bringing a video for Matthew to hold on the way home.

Matthew is able to take off chip clips but cannot put them back on. He will hand me the package and the clip to do it. He now likes Muenster cheese and will remove the baggie from the refrigerator when he gets home and let me know it needs to be opened.

He will also go into his backpack and retrieve his homework, proceeding to get a crayon and scribble a mess on the page before I can even try to hold his hand and help guide him.

I have even noticed Matthew now taking off his socks when there is either a hole in them or he has stepped in the water bowl for the cat. I just need to get him to toss them in garbage or laundry basket instead of the sock drawer. He will try on a few pairs until he finds one that fits.

I think the next step will be to show him how to empty his lunchbag and put ice bars back in freezer and remove the Rubber Maid Juice Box Containers so they can be rinsed out.

The feedback from the assistant and the communication checklist from the teacher is that Matthew is running 4-7 laps in Adaptive PE and enjoying Horticulture. You can tell that by looking at his hands and sneakers when he gets home. He really likes pulling weeds. These are the two classes that his MRS (Mental Retardation Severe) class is included with general education.

Here is an article I wrote on the issues we are having with LAUSD.

The To Do List Begins

My nonverbal son Matthew starts school tomorrow. Once he graduated Elementary School in June there was six weeks of summer day camp. After that commenced we had almost four weeks of down time at home.

While autism camp was in session I was able to do laundry and grocery shopping, but during this break Matthew had to accompany me everywhere I went. Several times this meant enduring an attack from behind if I took too long making a choice in an aisle. Waiting too long at the Pharmacy Counter produced similar results. Errands worked best if we went directly to the coloring book section so he could pick one out. But then he wanted to get home so he could color.

I have now compiled my To Do list of errands and things I can do that will go smoother and faster.

Get the car washed
Go to laundromat
Grocery Shopping
Take Nicholas for a haircut
Clothes Shopping
Go to the library
Take Nicholas Bowling
See a Movie with Nicholas
Visit the Zoo with Nicholas
Take Nicholas to Community Day
Paint over the fingerprints on the walls
Take Nick to Dentist for fillings/root canal
Find an Ortho for consult for Nick - needs braces
Find an Eye Dr for me - need exam, new glasses, no vision Ins
Follow up with Dentist for me - need new Dentures, no dental Ins
Take the cat to Vet - flea bath, trim nails
Get back to 24 hour fitness for daily workouts
Start swim lessons for Nicholas
Practice riding a bike - in neighbor's driveway with their bike
Take Nicholas to get hearing and vision test



At home we will no longer have to walk around the kitchen holding our food and plates away from his fingers. Glasses of milk will no longer get dipped by his fingers. The ice cream container will not get squeezed. I will not have to trip over the vacuum cord because he is playing with it while I try to maneuver it away from his grip.

I might not have to lock the bathroom door or see his feet under the door way banging on the door. My face will not be mashed against his while I sit at the computer. Constant running through the hallway and banging the walls will not occur constantly. I am sure there is more that I will be aware of tomorrow and as the quiet days arrive.

I hope to get a lot accomplished during the day so that I can attend to his needs once he gets off the bus. Transitions for the whole family - earlier dinner time and sooner to bed for everyone.

Cheers to a new day.

Preparing for Enrollment in Middle School

My 12 year old nonverbal son Matthew starts sixth grade at a Middle School in September. The homeschool for these grades was not acceptable to me so we had to go to Due Process. This took place at the end of the 2007-2008 school year. My main concern was to get into a school that follows the traditional school calendar of September through June. Los Angeles has year round schools with the offer starting a few days after school let out.

By that time I was already in summer camp mode so I did not get all the pertinent details on the class and school options. Once the six weeks of camp was over we took a week off before I delved into the school information. The school was getting new pavement so for two weeks it was closed and then trying to get anyone to answer in Special Education was not possible.

After several attempts I was able to talk someone in the office into mailing me the enrollment papers instead of having to fill these out with my son and his aide there. This preparation process is very necessary when taking a child on the autism spectrum to their new school for the open enrollment first come first serve four day bonanza. It is one of those times I wished there was special treatment for the special education students. I believe hearing my son screaming in the background with my pleading to make life easier for everyone at the office upon our arrival clinched obtaining these forms in the mail.

The forms were overwhelming, asking the years he attended other schools, what age when he first spoke, sat, crawled, fed himself. They wanted to know the dates of hospitalization and last visit to the Dentist. Other pertinent data like a court order about either parent, which I am bringing since I have sole physical and legal custody with the noncustodial parent on
supervised vistation per a custody evaluation years ago.

I put together a folder for the aide that will be taking the bus with my son. I have copies of both IEPs, a print out of the school calendar, a document I typed up with school name, address, phone number, bus route info, meal times and school hours. I also included the original copy of the document I had provided the Elementary School in using for a communication notebook.

I also taped the school picture of my son on the top of the folder and placed an English and a Spanish autism behavior card inside, as well as one of my business cards. I purchased two books about school buses and want one to be kept at school to help my son learn about the bus and as a reminder. I still need to look through my pecs resources to find a few bus picture cards for the schedule at school and his communication device.

I am hoping to have better communication with the school than with the two previous Elementary Schools. There is still the issue of toilet training at school and finding out if that takes place in the Nurse's office or regular restroom.

I was pleased with the information received from the Bus Supervisor when we talked last week. Hopefully it will be a Safe Bus, as well as a safe campus.

I do not want to overload the aide at the start of the school year, but I really feel two books he needs to peruse and share with the teacher/therapist is the one on the oral-motor program and the strategies at hand laminated bookcards that is portable and has tips on assemblies and fire drills.

I am also planning on going over the Basic Skills Checklist book with the aide to see which ones would be useful to new teacher and therapists.

I have typed out a list of questions for the enrollment tomorrow and what does not get answered will hopefully be addressed at the orientation the following night. I tried several times to schedule a tour and was told to just do it after we enroll. I hope they realize this will not be a quick walk through.

Autism Reviewer Book Swap

There are two ways I obtain books that I review over on Autism Spectrum Disorders @ BellaOnline. I receive many selections from either the Author directly or from their Publisher, as well as ordering books on amazon monthly with my gift certificate earnings from being an Associate.

I regularly tag books and other items I have and rate the products and reviews. I even added a few customer images to products that did not have any displayed. My wish list covers seven pages consisting of 167 products. As time permits I have written 224 reviews that are condensed versions. I am also a reviewer on Epinions, where reviews are posted as well.

The problem is having a large quantity of books in a small house with two kids on the autism spectrum. Before school let out for the summer our five shelf bookcase collapsed, leaving me with two footlockers and six plastic containers filled with book collections. I hope to convert to the Amazon Kindle by the holidays or with the next tax return. There are books that I want to keep in our library that I reference often, but a good number of them can be shared with other families and bloggers.

This is my idea. I have a list of books that I can share with families. This will help others who have a website or blog and looking for books to review and it gives the author another review for the same book that can be done at various outlets like Amazon and Epinions.

I joined Good Reads and went through all 43 pages of books that showed up in the autism search. I placed many on my list that I will review in the near future and made note of those that I have yet to peruse. I created an Autism Families and Professionals group. I would like those interested in sharing their books to join the group, post a comment here with their interest in any books I have listed and also to mention their blog, website and the books they can offer for this Autism Reviewer Book Swap.

I am interested in hearing from authors as well. We can help one another to get the word out about your book and share our opinions at the same time. The books can be shared with more than one other person and records of who has which book will be organized at the group at Good Reads.

Feel free to share feedback and interest on this idea. I hope there are others wanting to share their books in this swap system. This post will be used to update books that are available.

Books that are up for grabs for reviewers:

Take Him Home and Love Him

Child of Mine

Feelings to share from A to Z

When Sophie Gets Angry

Autism and Me

The Incredible 5 Point Scale

Different Like Me: My Book of Autism Heroes