The Sibling(s): Born Into An ASD World

Meet Charlie Allen

Charlie Allen

While growing up as the sibling of someone with autism may progress without a hitch, many harbor feelings of loneliness and resentment. As someone who falls somewhere in-between the above examples, I offer you my son, Charlie Allen. Not until the writing of this blog has Charlie, our youngest, granted me my long desire to write about him. He is the sibling, the brother to Samuel Allen that few, outside our family’s personal circle, know much about.

Charlie was born in 1997, the younger brother to our firstborn Sam. We had no knowledge of Sam’s Autism at this time so the years for early development were probably typical. Contrast to Sam’s quiet world, Charlie had a robust laugh and twinkle in his eye that set the stage to delight anyone in his presence.

I would rather be closer to my brother with autism than close to fake friends who isolate because of autism. Early on, I knew that wasn’t kind nor the way I wanted to be.

Charlie Allen

Everything changed when Sam began school.

It took four years to diagnose Sam’s autism. Meanwhile Charlie felt the residuals of the strain our family was going through. The dynamics changed and we, as a family, had a multitude of adjustments to make. Not easy on a child so very young. It was a blessing and relief when my husband and I decided I would leave my career to stay home, and since Sam had already started school, it gave alone time for just me and Charlie. We were given the privilege of time, those years were bonding and now I believe instrumental in Charlie’s foundation….and boy did he need one!

By the time Charlie began Kinder, his brother had already made his mark at the public school system where they would ultimately graduate from. Charlie’s quiet yet humorous nature began to emerge. My parents, both now deceased, were his biggest fans/supporters and gave both our sons their time and support that were monumental to both their development. But the Middle school years and beyond became difficult for Charlie. He had developed his own challenges such as fine and gross motor skills (penmanship, tying shoes) that made sports or P.E. painful. His sensory issues where far greater than that of his brothers. Smells, touch and even sight were greatly affected and had to be diagnosed and adjustments that his peers simply didn’t have to think about. The most challenging for Charlie was peer relations. Charlie had a choice, he could choose to play with the 5 or 6 other children in our neighborhood or his brother. This was forced upon him as the others told him so. Calling his brother retarded and refusing to include (actually running from them) Sam in any activity tested Charlie’s resolve early on. Charlie chose Sam. For that, he paid the price but learned to walk alone. We watched as Charlie began to befriend those with disabilities or outcasts as if a shield to protect the person. This is the quiet yet powerful strength of Charlie.

School Years

Pictured from left: Charlie, Herb and Samuel

I think Charlie found music as his escape. For him, this has been his release…first of anger (hard rock days) and then various genres that lighten paralleling his life. His Dad plays guitar as did his Do-Dad (grand-father) and he delighted in playing with both! This gave Charlie an audience. Too shy to play in large groups, Charlie has thrilled at smaller gatherings. He can master any rock song on his electric or delight country fans with a spot-on Johnny Cash! He can’t read music but can replicate any song after hearing it. For fun he occasionally plays the banjo and even Jerry Lee on piano. He is gifted!

My husband is a great father. This has been instrumental in both our sons development. Herb has a quiet strength and his skill as a carpenter offered Charlie an alternative to occupy weekends. Together, Herb, Sam and Charlie built a house together on a plot of land in the country. They learned teamwork and the value of hard work in a different way than typical high school sports. It worked. Together they enjoyed starry nights, bonfires and raising the walls of what their hands had built. Finding something you can do together (not everyone is a carpenter) is instrumental. Occupy their time when no one else will.

Becoming His Own Man

Today, Charlie is 22 years old. He has overcome the shadows and quietly stepped into manhood. He works for H-E-B and looks forward to growing with a company that serves. He is kind, Godly and delights in his brother’s company. He notices those who are outcasts and aids them quietly. He stands firm and doesn’t tolerate bullies, rightfully so. To end (and I’m a proud Mom so I could go on and on) this blog I would like to share an unexpected outcome that brings unexpected joy. Less than a year ago, one of those neighborhood childhood bullies approached Charlie and asked for about an hour of his time. Charlie accepted and they met. He asked Charlie for forgiveness for what he and his family had perpetrated on ours. Especially on Charlie as he took the unpopular path of defending his brother. It made an impression. Quite an impression. Charlie forgave and today they meet on occasion and have become friends. This is why I wanted so badly to tell the story of our Charlie. He allowed me permission (for the first time) so I jumped on it!

Charlie has helped me in so many ways. He has stood up for me many times during the middle school years when bullies were rampant. In addition, he has taught me to project that same kindness for the underdog. He is an excellent brother and I couldn’t ask for a better sibling.

Samuel Allen

Below is a Q & A with Charlie and after that, we offer you expert advice, several resources and checklists for your journey as the”sibling”.

Q & A with Charlie

How does feel to have a brother with Autism? It doesn’t feel any different than having a neurotypical brother. I don’t know any other way. I see Sam as my brother period.

What have been the challenges as you went through school age years together? Isolation from peers mainly. I was known as “the brother of the ‘weird/different one”. One example: in our neighborhood when other kids were outside playing, they would say I couldn’t play with them because my brother was retarded. That hurt. While it hurt, it made me become closer to my brother. I would rather be closer to my brother with autism than close to fake friends who isolate because of autism. Early on, I knew that wasn’t kind nor the way I wanted to be.

How did you handle the isolation? I turned to music. Specifically guitar. First it was electric. I let my emotions out on the electric guitar. Early on, I had anger due to my brothers bullies so I played hard rock music. Think Ozzy Osborne’s guitarist Randy Rhoads. Later, I found a love of acoustic guitar and became inspired by the music of Johnny Cash. The music truly helped me cope with the isolation from my peers, now I just enjoy playing.

Tonight! Social Development

Join Aspergers101 on Facebook for Livestream Series

There are many services available to help children with AS develop their skills and become more successful. Social skill groups, pragmatic speech and language therapy, occupational therapy, and special education services may all play a role in meeting the needs of your child. Guest speaker, Dr. Louise O’Donnell from UT Health Science Center, shares valuable insights into the autistic brain and offer solutions at every stage of a persons life when challenged with social integration. Host(s) Jennifer and Samuel Allen (Aspergers101) discuss effective strategies to teach social skills and address behavior are as varied and diverse as the unique individuals who make up the AS population and lead a panel of experts into the topic at programs end. (pre-recorded/runtime 1:31:00) 

There are no fee(s) to join us…see you on Aspergers101 Facebook tonight at 7p! (CST)

Happy Halloween!

Keeping it Safe

With all the spooky costumes, scary decorations, eerie noises, and sugary candy, Halloween can be a pretty overwhelming day and night for a child with autism.  

The challenges that may arise for children with autism spectrum disorders (ASD) may seem obvious on the surface but if this is your first Halloween, there are some precautions you may take to keep the fear to a minimum and actually have some fun!

Halloween can be a great source of fun for kids, but there’s also no need to push it. Have your child join in, but only if she wants to. If any of the celebrations are not something you both enjoy, don’t feel obligated to participate.

Remember, the diagnosis of Autism does not mean your child cannot participate in Halloween, just take some extra time monitoring the stimuli.

Below are some pointers to make your Halloween a less stressful time for everyone.

  1. Let your child practice wearing their costume at home. This gives you time to make any last minute modifications and time for your child to get used to it.  If your child refuses to wear any costume, consider letting them trick or treat in pajamas or regular clothing.
  2. Know your child’s limits and do only what he or she can handle. For example, if your child is not comfortable trick-or-treating, you can start by going to three houses. Assess how your child is doing and build up to more houses the following year.
  3. Create a visual schedule. This might include a map of where you will go.
  4. Practice trick or treating in a familiar environment. Visit friends and family, if possible, even neighbors.
  5. Partner with family and friends that your child likes. A sibling keeps them with the younger crowd but is familiar.
  6. Use role play to practice receiving and giving treats.
  7. If your child has difficulty with change, you may want to decorate your home gradually, especially with sensory issues. Be cognizant of over stimuli (bright flashing lights) and smells (candles).
  8. If you are giving out candy at your home, give your child the option to give a piece of candy. During the day, practice greeting people and giving out candy.
  9. If your child is afraid of going out at night, plan indoor or daytime Halloween activities.
  10. Remember, Halloween looks different for every child on the spectrum and you know your child best. Use your intuition and if you only make it to three houses, that’s okay!

Finally, be aware that Halloween celebrations may be LOUD and painful for those with sensory issues. Either bring headsets to buffer the sounds or remove your child from the heart of the noise. Preparation and planning can help you stay stress-free and keep Halloween a time of much fun instead of true horror!

Trick or Treat!?

 

5 Focuses For Creating a Learning Environment in the Home

When it comes to setting the stage for learning, individuals on the Autism Spectrum need to continue their learning experiences even after school. This requires responsibility from therapists, caregivers, and parents. Each must work together to help create a learning environment in the home that continues to provide opportunity to expand the vital skills a child is working on. This includes setting up a home environment, understanding your child’s classroom setup or making suggestions at their after school program.

Child playing at home

Here are five goals to focus on when evaluating a school-related learning environment in the home for children with Aspergers or HFA.

1. Increase Engagement:

It’s ok for kids to take a break after school and have some down time, but preventing total shutout is important. Whether it is a play activity or helping with homework, making this part of the routine will assist with expectations that the child will need to interact for an expected amount of time.

2. Increase Communication:

Asking the question “how was your day?” rarely gets the response desired. To get them to chat, incorporate out of the ordinary or silly situations to spark spontaneous requests or comments. (e.g. carrying an umbrella when it isn’t raining or dressing up the dog before your child gets home). Sometimes a child may need a prompt to take note about the change in environment, but that is ok! It increases the opportunity to communicate either way

3. Promote Independence:

Use visual charts to show the steps expected to follow directions without reminders. This is especially useful for morning and bedtime routines. It may take some time to teach the sequence to complete the task. However, using the visual will allow the child to find the solution on their own rather than get in trouble for not completing the task.

Ode to the Special Needs Mom

This is an older post. One I wrote many years ago when my son, Samuel was very young. The alienation I felt then, has been replaced with an empathetic wisdom from life lived. Seems important not to forget those initial (relate-able) feelings as many of you are just beginning your journey with Autism. Know you are not alone and that the hope you have for your child, above all the noise, is what will be your child’s ultimate ‘therapy’ for living the best life possible!

Neurotypical Mom, as a Special Needs Mom your world is foreign to me. Rotating seasons of soccer, cool moms club, overnight parties, and college sororities comprise a universe outside my own. Church youth camps and activities that have the word “team” in them are daily reminders that I have a special needs child. Your child is included, mine is not. And I must find a way to turn these negatives into positives for the sake of my child’s future.

You see compassion instead of judgment; inclusion is actually put into practice instead of just being a buzz-word; and being a warrior for your child might be the strongest asset you women posses!

Super Mom, Special needs mom

Raised competitive from a small town with sports and cheerleading in a world that didn’t include Autism makes it even more difficult to confess these surprising emotions. I’m not a whiner but what I want to do is shout “It’s not fair!” The only ones that hear or seem to want to understand this alien and painful feeling are what I’ve grown to refer to as special needs moms.

Using Scripts to Develop Conversational Skills for Students with ASD

Actors use scripts to help them memorize dialogue as part of their performance. Once they have memorized the script, then they can recite the words from memory adding meaning through inflection, tone and pauses. One of the common strengths of students with an autism spectrum disorder is that of rote memorization.

script, social skills, asd

Therefore, a script may be an excellent tool to build conversational skills. Scripts are written sentences or paragraphs that individuals can memorize and use as supports in social situations. From greetings to asking for help to engaging in a conversation, a script can be a simple and discrete visual support.

When possible, student interests may be incorporated to heighten motivation to use this strategy. If a student likes Harry Potter books, a script can incorporate pictures that represent events from that book that relate to the content of the script.

Scripts can also support students that tend to shift the conversation back to their own special interest.

San Antonio’s abilitySTRONG Parade…this Weekend!

Samuel Allen Grand Marshal

Everyone loves a parade! Especially when it’s the annual abilitySTRONG Parade, San Antonio’s inaugural Disability Pride Celebration. It is a public expression of the belief that disability is a natural and beautiful part of human diversity in which people living with disabilities can take pride. We have all your information of where to park, parade route and a list of all the activities slated to participate in beautiful downtown San Antonio!

The Parade Theme Awareness….We’re Stronger Together, resonates strongly with this year’s Grand Marshal Samuel Allen. “Upon hearing of my Autism diagnosis, I learned that my voice mattered above all the medical noise of what I will never be able to accomplish. That voice would mold me into all I could be or it would stifle me into less than.”


Event Checklist:

2nd Annual abilitySTRONG Parade
Saturday, October 26th, 2019
9:00 am  – 10:00 am
Downtown, San Antonio

Parade Route: Avenue E & East Houston St. in front of First Presbyterian Church and Express News Bldg. South on Avenue E, West on Houston St. North on Flores St., West on Travis St., South on San Saba, East on Commerce St., South Pecos-La Trinidad and into the UTSA Cattleman Square parking lot.

Event Parking: Accessible shuttle services will be available between all of the ​lots below and Market Square from 7am – 2:30pm.UTSA D1 & D2 Lots
Employee A and B, and unmarked surface spaces.
*UTSA Geo Development Lot (On San Saba between Dolorosa & W. Nueva)
*Washington Square Lot (Santa Rosa & Nueva/Dolorosa)
*Washington Place Lot (Next to La Quinta on Dolorosa & South Santa Rosa)
*City Parking Lot (PAID PARKING Parking is available in the City Parking lot at Dolorosa between Santa Rosa and Laredo)

Event Program

Animal Shelter Volunteer Work for Kids and Teens with Autism: Master Social and Job Skills

Volunteering at an animal shelter is a great way for tweens, teens and young adults on the autism spectrum to practice and improve social and job skills. They also learn responsibility and a respect for animals. As visitors come into animal shelters to look at animals available for adoption, it’s the perfect place for teens to improve face-to-face communication. The experience they gain volunteering at an animal shelter molds them into more effective volunteers and prepares them for the workforce.

Animal Shelter

Volunteering at an animal shelter is a fantastic opportunity, especially for teens with Aspergers. It has been widely discussed that children, teens, and adults with Aspergers form strong bonds with pets, and can greatly benefit from animal companionship.

Their time spent volunteering will produce better outcomes (adoptions) if they have good communication skills. Here are some top social skills from my book to ensure teens maximize the chance of an animal getting adopted, and master important social and job skills:

1. Smile and Say Hello:

When you see another person, whether a co-volunteer, staff member or visitor, smile and say “Hello”. Your smile will set the tone for positive future interactions and brighten the person’s day. It may even lead to an animal getting adopted or a financial donation. It all starts with a smile!

I used to volunteer at an animal shelter walking dogs. Often I would be in the back of the shelter bringing a dog in or taking one out. There would be people in the back of the animal shelter looking for animals to possibly adopt. I would smile and say “Hello”. I’d ask if they had questions about any of the dogs I walked. Often they would. After telling them about the animals, I’d suggest they spend time with any animal they were interested in. About 70% of the time they’d end up adopting an animal just because I engaged them and was able to provide helpful information. You can do the same thing!

2. Turn Off the Electronics:

When you are volunteering, keep your phone at home, or turned off, on silent or vibrate mode, and out of sight. This is part of being a professional volunteer and lays the foundation for good work habits.

3. Say Please and Thank You:

What Are School Accommodations and Modifications for Students with Asperger’s?

Some students with disabilities require accommodations or modifications to their educational program in order to participate in the general curriculum and be successful in school. Each child with autism or Asperger’s Syndrome is different and has their own unique needs. Parents will meet with school personnel in an ARD/IEP meeting to determine what accommodations and modifications should be implemented to best assist their child. It is imperative that parents and educators understand the difference between the two.

Portrait of schoolboy looking at camera at workplace with anothe

For many students with Asperger’s Syndrome, accommodations will be needed to access the curriculum and remain in the least restrictive environment. Accommodations (the HOW) can be made for any student. Students do not need to have a 504 plan or an IEP.

Accommodations do not alter what the student is expected to learn but rather make learning accessible to the student.

They allow the student to demonstrate what they know without being impeded by their disability. Students are required to complete the same assignment or test as other students, but with a change in the timing, formatting, setting, scheduling, response and/or presentation. They do not alter in any way what the assignment or test measures.

(http://www.texasprojectfirst.org/ModificationAccommodation.html)

Accommodations can be referred to as good teaching practices. Here are some common accommodations made for students with Asperger’s, high functioning autism, and other related disabilities.