Emotions of Raising Autistic Teens

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For now, I’ll continue searching for answers.

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 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.