Jeremy’s Point of View: Person Centered Planning and Self-Advocacy

Jeremy's Team and Friends

Jeremy’s Team and Friends

Guest Blogger: This is a blogpost written recently by my son Jeremy Sicile-Kira for the Autistic Global Initiative. The Autistic Global Initiative recently developed an online training course to train support staff : the  AGI Residential / Daily Living Support Course.  We all know how important training is, this is a wonderful resource!

From Jeremy:

Person centered planning PCP   means that the person who needs supports is at the center of any planning about his or her life. Justly the person must be able to give his opinion even if it is just to point to “yes” or “no”. This PCP is important to having a real life. Self advocacy means being able to really advocate for what you want in life and be ready to let people know what your wants and needs are.

When you need support staff for daily life, it is necessary to kindly be able to make them know what is important to you and to your life. For example the following is important for my support staff to know:

I want friends. Justly I really have a hard time making friends. I nicely need to type  out everything I want to say or point to letters which can take a while. Justly I  need support staff  to help me find places and situations to meet new people and  who can help me to make and have friends. Support staff  have to help me talk to people using my voice output technology.  It is greatly important for staff to support me in writing answers and communicating with others, and not to answer for me. Helping me do that is nice but also necessary for me to have relationships with others besides my support staff.

I need to be given opportunity to use my voice output technology on my iPad. I get less opportunity to interact with people now that I’m not in school. Just using my iPad when ever possible  gives me a voice. Support staff  are nice to give me the opportunity to order in restaurants with my  iPad and not just my letter board. Nicely the voice output app on my iPad is  my preferred communication method  while outside of my house.

Nicely staff need to have an understanding of my real life  goals.  Having support staff who are justly aware of my short term and long term goals is important. Just having everyone on the same page nicely makes a team run smoothly. I think having team meetings really helps remind everyone on the team of my goals. Having short term goals followed through on is a big deal and very important to me. It truly makes me happy just finishing something I put my great mind to. Frankly it also makes me happy knowing that my great team is following through on what is decided is important to my daily life. Nicely every team member should have seen my Individual Support Plan  ISP when they start working with me and we should all go over it frankly at  every team meeting.

Justly having the opportunity to give my input helps me have better days. For example, nicely every morning when the schedule for the day is made I have the opportunity to say what I want to do that day and in what order. Greatly it is just a good way to start the day. Greatly routine is important but so is having fun.

Greatly support staff need to be trained on how to be a communication partner,  and in inclusion.  Justly they need to know how to help me in group situations. It is not easy when you need a device to communicate and staff must feel comfortable in redirecting interactions to me. Also they need to know how to help others feel comfortable in communicating with me.

Person Centered  Planning and Self advocacy are important  to include in every day life for someone like me. Truly my life has meaning because of these two concepts. Greatly I hope all people are given the opportunity to learn them.

 

Travels with Autism: Paris Patterns

 

Musee Quai d'Orsay

Musee Quai d’Orsay

When Jeremy was little, he loved looking at patterns. He was born in Paris and always loved studying the various patterns that French architecture provided him. Back then, I did not know why he was so interested in them. He had autism and admiring patterns appeared to be part and parcel of that.

Years later, when he could write, he explained that he liked patterns because they are predictable  – they don’t change. Patterns help him make sense of the world.

Now I’m back in back in Paris for ten days with Jeremy’s sister, Rebecca. We visited a few patterns Jeremy enjoyed when growing up here, and took pictures for him to enjoy.  I hope you enjoy these  little bits of Paris as well!

Apartment lobby floor tiles

Apartment lobby floor tiles

Street sign and building bricks

Street sign and building bricks

pavement stones (les pavees)

pavement stones (les pavees)

Place des Vosges. Ceiling

Place des Vosges. Ceiling

Lefevre water closet floor tiles

Lefevre water closet floor tiles

Lefevre kitchen tiles

Lefevre kitchen tiles

 

What You Need to Know about Seizures and Autism

Silently Seizing I received the book Silently Seizing a while back and only recently found the time to crack it open – and I’m glad I did! Most people recognize grand mal seizures. However not many know how to recognize an absence seizure, a partial seizure, or a complex partial seizure – they may interpret the odd behavior as a characteristic of autism. Recognizing possible seizure activity is only one of the areas covered in this book which was the winner of the prestigious National Parenting Publications Award. (I like this book so much I also posted about it  on Psychology Today).

This clearly-written book is by Caren Haines, RN who is not only a registered nurse, but also the mother of a 24 year old son diagnosed with autism who suffers from seizures. Caren makes the important point that often times medical professionals analyze the behavior of a person with autism as just being part and parcel of autism, when in fact most of us parents and wise educators have figured out that all behavior is communication. In some cases, a child or teen may be having subclinical seizures and instead of treatment is given a behavior plan.

Caren shares not only how to recognize possible seizures, but describes the helpful data for parents to collect for the neurologist looking to see if a silent seizure disorder is present. As well, Caren shares her son’s experience as well as that of other families, which helps the reader understand more about life with seizures. Dr. Nancy Minshew and Dr. Darold Treffert provide valuable information as well. Also included in the book is a very helpful chart of medical tests to identify underlying causes of autism that may influence the ultimate prognosis of autism.

An important fact that I always tell my audience when I present on the topic of Adolescents and Autism: Many teens on the spectrum who have not been diagnosed as having seizures earlier, develop (or are identified as having) seizures during the teen years – probably related to puberty.

Parents should read this easy-to-digest book to understand more about seizures. It might make a big difference in your child’s life!

 

Autism College Free Q & A with Visiting Professor Lindsey Biel M.A. OTR/L on September 5th

Join Visiting Professor Lindsey Biel M

A

, OTR/L  and moderator Chantal Sicile-Kira in a free interactive webinar  on Back to School Sensory Tips

 Register

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com/register/event?oeidk=a07e7xrekxj27cabd90&llr=pi7vyonab”> here to sign up for this free opportunity to get educated

And tell your friends!

 

Practical Training on Adolescence and Autism for Parents and Educators

Teenager:autism.001

Are you a parent (or educator) of a pre-teen or teen? Do you wonder about how, what and when to explain puberty to your growing child?  Are you wondering what an ITP is and how to best prepare your child or student for adult life?  Or do you just think his or her autism is getting worse? Then  this  three-part series taking place on Tuesday evenings September 10, 17, 24; at 6:00 pm – 8:00 pm  PST  (9:00 pm to 11:00pm EST) is for you. This on-line series, will be available from the comfort of your own home (no matter where you live).

Based on the award-winning book, more recent information, and Chantal Sicile-Kira’s popular national presentations, this three-part interactive series on  Adolescents on the Autism Spectrum costs $99 and  includes:

  • The basics on what you need to know when your child or student (of different ability levels) is a pre-teen or teenager
  • Resources for more information on various topics
  • Opportunity for the participants to write in or call in their questions to Chantal.
  • 6 hours of training
  • PowerPoints provided before the live training to help with note taking.
  • BONUS: Opportunity to watch replay of training at a later date (convenient if you miss a session).
  • BONUS: Opportunity to take part in Google+ hangout discussion with Chantal following the series.

Here’s what some past participants have to say about this online course:

“This was so informative. Thank you so much for sharing your knowledge and experiences. I’m looking forward to hopefully meeting with you in the near future.” – Danielle (educator)

“I just have to say that I’ve attended your classes before and I always leave with great information.”  Rachel (parent)

“This is really informative and has just given me lots of things to think about and do.”  Linda (parent)

 “ I’m really enjoying these classes. They’ve been very informative. Thank you.” – Erika (parent)

To attend this class, register here.

September 10: Adolescence 101: The Teen Basics : Everything you need to know (but don’t know who to ask)

Topics to be covered include:

  • 13 things every parent or educator needs to know about teenagers;
  • The general challenges faced by ASD teenagers;
  • Sensory processing challenges in adolescence;
  • Functional strategies to help with daily transitions;
  • Family and sibling concerns;
  • Teaching about puberty, hygiene, self-care, masturbation.

 September 17: Adolescence 102: Relationships: It’s Complicated

Topics to be covered include:

  • The notion of privacy and consent;
  • Relationship boundaries;
  • Introduction to sexuality;
  • Self awareness;
  • Self- regulation;
  • Bullying,
  • Interdependence.

September 24: Adolescence 103: The Transition Years : Plan, Prepare, Practice for  the Real World of Adult Life

Topics to be covered include:

  • Preparing the transition to high school;
  • the ITP- Individual Transition Program and IEPs;
  • Teaching life skills needed for work and / or college including:
  • Self-esteem; Self-advocacy; Executive functioning, Self-reliance;
  • Building on strengths and the use of mentors.

The cost is $99.  To register, go here.

The teen years

The teen years

Jeremy Sicile-Kira’s High School Commencement Speech

Jeremy graduated form high school at age 21 with a full academic diploma. He auditioned to give a commencement speech, and he was one of those chosen.  Here is the speech he gave.

Jeremy Sicile-Kira’s High School Commencement Speech

 

Can a teenager or adult with autism still benefit from treatments and therapies?

Often I get emails from people asking for advice. This is one I get often, so I’m posting it here.

Dear Chantal,

Can an adult or teenager still benefit from ABA therapy, music therapy, auditory integration therapy? How beneficial is vision therapy and auditory therapies? Are there research studies or evidence based studies supporting these therapies?

Sincerely,   Sheila in Jacksonville

Dear Sheila,

I know we often hear about that ‘window of opportunity’ being open during the early  years, and it is true that early intervention has been shown as being the most effective intervention to help children with autism acquire skills.  However, that window does not  shut after a certain age. One thing we also know is that there is such a thing as neuroplasticity, which means the brain can continue to change and improve, which is why an old dog can learn new tricks.

You are right to look at the research, but when looking at different therapies it is also important to look at the person you are trying to help, and see if he has the characteristics of the type of  person who has benefited from those therapies.  When looking up information in regards to treatments and therapies, as well as research findings, remember to look carefully at who is providing the information (some websites have information but do not tell you the source of the information),  how the research was carried out, and who is reporting it.  Also, adults on the spectrum may be able to tell you what their experiences have been with different therapies.

For  information on the effectiveness of  many treatments and therapies on adolescents, as well as reputable websites for current information,  see my book  Adolescents on the Autism Spectrum.

Chantal

Teaching Toilet Training to a Child with Autism

Here’s an informative article with many tips about toilet training by guest blogger, Professor Eric Lim of  Kits4Kids Foundation.

Toilet training is teaching an entire new skill. Teaching new skills to children with autism spectrum disorders works best when the steps to the task are organized into simple pieces. Teaching must also be consistent at all times and become predictable to the child in terms of rewards and consequences. In order for toilet training to be successful, the child must move from depending on reminders (timed trips to the bathroom) to recognizing the signs of a full bladder and taking the necessary actions him/herself.

As parents we look forward to that time when our child is finally toilet trained. We expect our child to learn to use the toilet as part of the growing up process. Not every child is alike, some children are difficult to train and may make toilet training harder on the parent. Learning to use the toilet is part of socialization. Children become interested in training when they become aware that other children and adults use the toilet. They assume that using the toilet is part of being considered a “big boy or girl.”

Most children enjoy the recognition and gratification they receive from adults when using the toilet as well as the rewards that come their way. However, young children with autism have trouble applying the same social interaction reason to toileting. They also are being asked to change set routines and rituals and they also may not be aware of or able to control their bodies just yet.

Signs of Readiness

For children on the autistic spectrum, it’s recommended to look for signs of readiness. Signs may include the following:

• Awareness that he or she has wet or soiled, a desire to remove the wet or soiled diaper (pulling at it, taking it off, digging in it, and or vocalizing displeasure.
• Getting a clean diaper, or taking you to the bathroom
• Ability to imitate actions (sitting on the toilet)
• Responds favorably to some form of positive reinforcement (a learned behavior increases after you reward it with something the child likes)
• Stays dry/clean most nights

When to start toilet training a child with autism:

• Many children with autism train later than the average age. Many succeed at urine training before bowel training. Many take longer to train, some reports suggest up to a year to become dry and two years to become clean.

• Start toilet training when you can be positive and the child is able to: sit comfortably on a potty chair or toilet for a couple of minutes, stay dry for at least 60 minutes, is aware of being wet or dirty, is showing interest in other people going to the toilet, showing some signs of cause and effect, and is willing to cooperate. Be prepared for it may be a long learning process.

Communication Problems with Toilet Training

For children with a communication deficiency visual learning may be an appropriate way to teach toileting skill. Does the child understand language? Does he or she understand “potty”, “diaper”, “dry pants”, “toilet”, “bathroom”, or any other words, signs, or pictures/symbols that may convey the idea of toileting. Children with Autism may have difficulty understanding and associating words with actions and most will at least need more time to process what you say. Can the child express the urge or need to use the toilet? Expressive language is almost always a problem for children with an autistic disorder. It will be important to be able to read their cues and/or teach a way to express the need or urge to use
the toilet.

Special consideration for children with autism:

• A child with autism may not be able to communicate a need to go to the bathroom, therefore body signals from the child, routines, and visuals might be significant aides.

• The child with autism may learn to use the toilet at home and be unable to adapt to a new situation easily.

• A child with autism may have sensory difficulties such as discomfort by the hard toilet seat, being afraid of water splashing, or want to play in or watch the swirling toilet water.

• In public bathrooms children with autism sometimes fear the hand dryers, have problems with the doors, the way the toilet flushes, or any number of challenges.

• Having a bowel movement is often harder and occurs less often. Some children go off alone and squat, some insist on wearing the pull-up or diaper to make a bowel movement, some fear that it hurts, some smear feces, and others want to be clean so much that they react to getting anything dirty on them.

• Rule out any medical problems and account for fears that may have developed due to pain from constipation or urinary tract infections in the past.

Before you begin toileting make sure your child does not have a medical problem which would interfere with making toilet training a success. This can be ruled out by the family physician after a routine physical. Contact your physician if you notice any unusual signs like too much or too little urination, painful urination, urinates frequently or unable to hold urine. The same applies to concerns with stool. Children with Autism have a higher than expected rate of bowel problems (constipation or loose stools or both) and require extra care if this is the case.

Making Toilet Training a Success

• Before starting, keep a record for a few days, charting every 20 – 30 minutes whether your child is dry, wet, or dirty. Some diapers have a strip that changes color to make this easier. Chart periodically, maybe once a day each week after starting training to keep track of progress, problems, and tendencies.

• When you start training, prepare the environment with the needed equipment and remove extra distractions.

• Plan a schedule that will match the report you gathered. If you child usually stays dry for an hour, anticipate to take him/her to the bathroom about 10 minutes before. Try to match the schedule to the natural cycles of the day.

• Plan the routine that you will have your child follow and make a picture chart of that routine so that your child and everyone who helps him can follow it. Change the cue level by decreasing examples as the child achieves the skill.

• Watch for signs of readiness such as when your charting shows being dry for an hour, your child indicates in some way that she is wetting or soiling diapers, indicates in some way that she has soiled or is wet, regular bowel movements, or interest in others going toilet.

• Keep positive, praise attempts, praise being dry and clean, use reinforcement and give your child time.

• When your child has some success with understanding toileting help him/ her learn to indicate that they are going to the toilet with a sign, word, or picture or several of these. Children today often use potty, pee and poop, but signing toilet may work or a picture of the toilet may be helpful. Visual cues as part of your routine helps the child tell you when they have to go potty.

Visual and Verbal Cues in Toilet Training

• Give a visual and verbal cue –such as an auditory giving the child a buzzer or bell. Decide what verbal cue you will use such as go potty, go pee, or go to the bathroom. If you use a signs, pair it with the verbal cues.

• Enter the bathroom with the cue needed (verbal, light touches, taking the child’s hand, or more physical assist).

• Pull pants down to ankles with cue

• Sit down with cue

• Pee or poop or both with cues

• Get toilet tissue and wipe with cue

• Stand up with cue

• Wipe, if needed, and throw tissue in toilet with cue

• Pull up pants with cue

• Flush toilet with cue

• Turn on water and wash hands with cue

• Turn off water and dry hands with cue

Use visuals: For many children, having a picture of a toilet or potty chair as a cue to go helps. You might also make a picture schedule to sequence the major activities of the day adding the toilet pictures before or after these. Children have learned to go on their own in this way. The pictures can be laminated and put on with Velcro or inserted in plastic sleeves so you or your child can take them off or change the order. There are also videotapes about using the potty that some children with autism have reacted well to. Other parents have made videos for their child to watch, some have paired music with the pictures. Model for you child, use books and pictures sequences about going to the toilet. Visuals
help your child know what to do, remember what to do, and learn from the sequence.

Use imitation: Imitation is a type of visual. Many children with autism are delayed in their imitation abilities, but many do watch carefully to what is going on around them even if they don’t seem to immediately imitate. Watching someone close to their size use the potty may be useful, but it is helpful for them to see that going to the bathroom is something everyone does. Some children might respond to the use of a doll to go through the steps.

Teach privacy and modesty: Most young children undress anywhere and don’t care who sees them go potty. However, as they are approaching four years of age, they often begin to want more privacy. Children’s needs must be considered and children have to be taught what society expects. Consider teaching your child to undo and pull down pants only in the bathroom as well as pulling up and fastening pants before leaving the bathroom. Once your child is toilet trained teach him to close the door. Also you might want to consider teaching your child when and where he must
be clothed or covered and not naked. Teach them to ask for ask for help with bathing.

Use words that are appropriate: Some children with autism are constant with the words they heard when very young and will not change to more appropriate words later. However, if you are aware of the need to be age appropriate it usually works to use the words that everyone else of the same age is using.

Ideas for Specific Problems That May Be Encountered:

• Resists sitting or doesn’t sit and relax long enough: Encourage your child to sit with his/her clothes on. Make sure the seat of the potty chair or the toilet is comfortable to your child, maybe it needs to be softer, maybe lined with a diaper, maybe warmer, or maybe your child’s feet need to be more stable. Some children may need to have the hole on the toilet smaller and experimenting with various sizes of seats or even covering the toilet with a towel or cardboard may help. Give your child a reason to sit such as his special reward that he/she gets while sitting. Use modeling by sitting together or having a doll or favorite stuffed animal sit. Give the child a visual or auditory cue about how long to sit by a visual timer or the length of a song. Help your child relax while sitting by providing support for feet and body where needed and rubbing your child’s legs. Sometimes children are so tense that they can’t relax and go.

• Afraid of flushing or excessively interested in flushing: Encourage your child to play in water that swirls in other places than the bathroom and at appropriate times. Always let your child know when you are going to flush the toilet when he/she is in the bathroom. Gradually bring your child closer to the toilet by providing a place for the child to stand while you are flushing. When your child is ready allow him/her to flush and either run or stay and watch. Establish a rule that you only flush once then you are all done.

• Afraid of public bathrooms: stalls, hand dryers, different sinks, toilets that flush automatically: At first, it may be necessary to be aware of the public bathrooms you may frequent to know what is likely to cause your child problems. Some of these can be avoided like being far away from the dryer and not walking under it and practicing with soap dispensers and sinks that go on by themselves in a fun way. Protect your child from toilets that automatically flush since some splash a lot. The more you know about the quirks of the public restroom the more you can prepare you child. The handicap stalls are wider and more accessible many a sink next to the toilet.

• Playing in water or with toilet paper: Take the toilet paper off the roll and put it up until your child can master the use of it. Put safety catches on toilets until your child can understand that toilets are not places to play. Allow lots of water play in appropriate places and even swirling water to watch such as in “tornado bottles”. Lower water toilets aren’t as much of a temptation while sitting. Use tissues that are folded or pre-measured, a box of wipes, and folded toilet paper are helpful.

• Resists being cleaned or not wanting to be dirty: Sometimes smearing of feces begins by the child trying to clean himself. They may try to clean up then make a mess. For whatever reasons your child may be having trouble in this area it is wise to stay as calm as you can. Establish a clean up routine that is not especially rewarding, but is comfortable and quick. Make sure the wipes are big enough and comfortable enough for your child including temperature and texture. If your child gets some feces on his hand and is distraught help the child wipe it as soon as possible. Show the child that they can wash their hands clean with soap and water. Sometimes as children with autism grow older they become upset when something happens like a toilet overflowing or they get their hands dirty and react
out of proportion, so we want to assure them early on that this can be fixed quite easily.

• Fear of having bowel movements or constipation: This is a common problem for many children with autism at some time in their childhood. It may be contributed to by diet, not sitting long enough, not being able to relax, their activity level, or various other factors. It is helpful to help a child recognize that the grunting and squatting he/she is doing helps make a bowel movement and that is good. Many children go and hide in a corner to do their poop and resist a change. Help them move closer to the bathroom and perhaps identify where to squat by using a plastic mat as the spot. Gradually influence the action to the potty or toilet over time the child associates the grunts and pushes as signals.
A child may have to go in the diaper even while sitting for a while so try a diaper-lined toilet seat. If a child experiences constipation on a regular basis bowel movements may be uncomfortable and you may need to seek advice from you doctor.

• Trouble in standing while urinating: When your son is sitting to urinate and completely toilet trained or when he shows an interest in standing he may need help. A visual chart of how boys use the bathroom may be helpful. For example action pictures of a boy putting the seat up, standing while urinating and aiming in into the toilet. Sometimes boys do not want to touch their penis because they may have been told not to touch on some occasion. A male in the family may need to demonstrate how to point and aim. Something may be used for a target like a floating paper, a Cheerio, or colored toilet water.

• Regression in toileting: Sometimes a child who is fully toilet trained will begin to have many accidents. Evaluate changes that have occurred and what information or additional supports may help your child feel comfortable again. Some reasons regression may occur are after an illness, after a parent has been away, after a move, after starting school, after a baby has been born, or when going to the bathroom has been painful. Your child may be in a situation where he doesn’t have the skills to tell someone he needs to go and holds it too long. His supports may not be in place. Sometimes at school there is something about the environment or the schedule that is causing problems for your child.
Go back to all the original supports that worked and put them back into your child’s life while reassuring your child that he/she can and will succeed.

Consistency in Toilet Training

Your child can be toilet trained. However, training your child with autism will likely take more planning, attention to detail, and consistency than training typical children. (Remember that all children with autism are different and some are easy to train.) You have to organize the sequence and provide a schedule and consistency until your child understands how all this relates to his body functions. Keep your expectations realistic and reinforce your child for trying as well as for success, always reassuring the child that he/she will succeed and there is plenty of time to try, and be persistent.