Let's Chat: Support Through Experiences - March 24, 2019

Dedicated & Committed Parents

Let's Chat: Support Through Experiences is a support group for parents of people on the autism spectrum. After a two year hiatus, Let's Chat has restarted with a solid group of parents that are driven and dedicated in their concerns and efforts to help their loved ones on the autism spectrum. 

At the start of our first meeting, each member filled out a questionnaire about the resources needed for our child/children, ourselves, and/or our family. Then we introduced ourselves and shared some of our main concerns.  Below are a few examples of resources that parents may need. 

One of the questions on the questionnaire asks parents if they have registered their loved one on the State Waiver lists. When we first received our daughter's autism diagnosis, many parents told us to register her on the state waiver lists because the waitlist is 10 or more years long. These parents told me to register whether or not our current income disqualified us because 10 years from now, you may not necessarily have the same income.

During our support meeting, we discussed behavior, providers, the need for support, diagnosis, and more. Our next support meeting is April 14, 2019, from 2:00 pm to 4:00 pm at 12510 Malcomson Road Houston, Texas 77070. 

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Social Moments with HARS!

The Benefits of Outdoor Activities 

A growing number of research studies indicate that outdoor activities provide many benefits for people, including restorative or stress-reducing effects. One study found outdoor activities provide seven main benefits to children on the autism spectrum, including promoting communication, emotion-regulation, interaction, physical activity, and decreased sensory sensitivities. 

Our Outdoor Adventures!

Last Saturday, January 21, 2017, we all met at Lake Houston Park in New Caney, Texas. It rained hard the days prior to this and an intense rain storm blew through the night before. I thought about canceling for fear of an onslaught of mosquitoes and muddy hiking trails. Thankfully, my daughter encouraged me to practice patience and asked me to wait. I am so glad I did. It could not have been a more perfect day at the park with clear skies, a moderate temperature, and very few people. Splendid!

Live Snakes

We met at the Nature Center. In the Nature Center there were five rooms with different themes: Wilderness, Reptiles, Forest, Reading room, and Wetlands. The Wilderness was all display animals, some live turtles, and a beautifully created "Wilderness" environment. When all was quiet and still, one truly felt like one was in the Wilderness. The Reading room had a small reading nook that looks like a tree. The Reptile room had live snakes, charts, and snake skins that can be touched. The Forest room had a live Chilean Rose Tarantula and other non-living insects on display. And The Wetlands had a bunch of aquariums with live turtles swimming and turtle shells on display.

There was a small nature library, different animal furs that could be touched, and all kinds of interesting information to be learned. After the kids and parents finished checking out all the rooms, we all used the restrooms and prepared for our hike.

The Hike

Bridge Over Peach Creek

When everyone was present and accounted for we set off to hike the Magnolia trail. To get to the trail, we walked over a bridge that crossed over Peach Creak. The water was much higher than usual, due to the rains over the past few days, completely covering the beach area. Magnolia trail was the second left after we crossed over the bridge.

Once we were on Magnolia trail, the kids ["J", "L", "A", "N"], and one young adult sibling, ["R"] took the lead while us parents walked slowly behind enjoying the beautiful sounds of the woods, spotting all kinds of creatures and wild berries. There are signs on the trails with information on the uses of certain trees, animal tracks, and berries.

The trails had some puddles, but the kids managed them very well. It was so peaceful and energizing to be among natural life. Us moms were focused on our kids, but I got the sense that each of us truly needed this disconnect from the "rush of life". The kids stuck together and enjoyed being ahead of us, leading the way.

Chow Time!

After our hike, we asked, "Are you all ready to eat?" At the same time, they said, "Yes!". So we walked over to the Peach Creek Group site to unpack the food and build the fire. "R" assisted in building the fire and keeping it going.

While the fire was being built, two moms ["Ro" and "Y"] and their kids played board games. One mom, ["E"], grilled the hot dogs over the fire. Once the hot dogs were ready, we filled up our plates and sat together near the fire eating and chatting. After we finished our meal, we set off to find "marshmallow sticks". 

Two of the kids had never roasted marshmallows. "J" (right) was a bit apprehensive at first, but once he saw what was expected, he picked it right up; eventually roasting his own marshmallow. It was also "A's" (left) first time roasting a marshmallow. He knelt down next to his mom and roasted his marshmallow, then immediately got up with excitement and ran around the campsite. 

Insects!

We did not see many insects during our hike, so when "R" saw a Canker worm hanging from a tree by it's silky web, "L", and "N" jumped up with her to check it out. The worm fell to the ground and "R" picked it up with a leaf and put it back in the tree.

Toward the end of our adventures, "J" began listening to Beat It by Michael Jackson, so we jammed out for a while. It was such a relaxing time for all of us. Our next outdoor adventure is scheduled for February 25, 2017 at the same park. 😄

Social Moments with HARS!

Our First Social Skills Meeting of 2017

Some of the key characteristics of autism are difficulty with social communication, social interaction, and social imagination. Because of this, it is ALWAYS heartwarming to see our children playing and interacting with one another, as friends. It is also wonderful to get together with moms who are dedicated and keenly focused on the social dynamics of their children's lives. I absolutely LOVE our group. 

Our social skills group has been meeting for almost a year now. During this time, we all have been growing together. I love the varying dynamics in the children's personalities, language and communication skills, and cognitive abilities. And most importantly, I love the fact that our children have people to hang out with that accept them as they are.

To start the meeting, the children played games such as Lucky Ducks and "Sly Fox". 

Next, we had the kids sit in a circle and share with each other what they did over Christmas break. Each one of them had lots to say and some of them asked additional questions of their peers relating to Christmas break and presents received.

After the children finished their "Greet & Share", we had them come over to the tables to complete an activity, collaborative drawing. Collaborative drawing is when two or more people draw together to complete a picture. There are many variations, mediums, and methods that can be used to do this.

Collaborative Drawing

We put the children in groups of two and provided them with a piece of white paper that had one object already on it, the sun with clouds. Two moms modeled the directions while at the same time explaining the directions to the children. (We found out really quick that one mom was inept at drawing animals. Haha! No worries, thankfully, the other mom was skilled enough to make the animal look like an animal. Smiles!)

Materials for this activity 

White printer paper with one object drawn on it

Markers and pencils

Directions

One person draws an object on the paper. 

Then passes the paper to their partner. 

Then the partner draws an object on the paper and passes it back.

Each child draws four objects on the paper (Some children may enjoy coloring in their objects after they draw them.)

After each child draws their four objects, then each child "tells a story" to the group about their collaborative drawing.

(The objects could be anything the child thinks of. However, if the child expressed difficulty in thinking up an object one of the moms guided them.).

Exquisite Corpse

During the next activity, we created an Exquisite Corpse on white card stock paper. 

• We passed out sheets of animated characters to help the children with ideas. 
• The children watched this video showing and telling them what they would be doing, then they (with the help of their moms) completed the activity. 

We ended our meeting with goodbyes, hugs, and "See ya soon".

During the next meeting, our lesson and related activities will be on "interrupting".

Criteria to join our social skills group

• The participant must have the ability to sit in a group setting.
• The participant must participate in the activities.
• The participant must be 7-12 years old.

Currently, we have two spots open for girls 7-12 years old. If you are interested or have questions contact me, Maranda Marvin, at harsgroup2015@gmail.com or through our Facebook page.

Homeschooling

This blog post is meant to guide and direct you in your decision to homeschool or not to homeschool.

Learning-style

What kind of learner is the child? What kind of learner are you? Visual, auditory, read-write, or kinesthetic.

This is very important to understand. Many people learn in a variety of ways but most have a natural learning style based on their neurobiological makeup.

As a teacher, it is good to understand what type of learning style you naturally prefer. This is because you will learn to teach subject matter in the way you naturally learn. This may be problematic if your child does not learn in the same way.

Curriculum

There are a number of proprietary paper and online curricula to choose from. As the parent, you must think ahead and ask yourself these questions:

1) Why am I homeschooling?

2) Will my child ever be back in a Texas public school setting again?

3) Will my child need to take standardized tests based on specific standards?

It is important to understand the way your child learns before you decide which curriculum to use. Some paper and online curricula align with Texas education standards whereas others do not. If you do not have the money to purchase a curriculum (paper or online), you can create lessons and activities using the Texas Essential Knowledge & Skills (TEKS) standards for your child’s grade-level.

-- See Dallas ISD “Tips for Effective Lesson Plans”

Parent/Teacher Skills Assessment

When deciding to homeschool it is very important to know your own strengths and weaknesses as a teacher. How you learn and your ability to teach another person how “they” learn are vital for effective outcomes.

You must ask yourself these imperative questions: "Do I have the ability to learn how my child learns?", "Will I be able to slowly separate my roles as parent and teacher?", "Do I possess time management skills?", "Do I have personal issues that may hinder the progress of learning?", "Do I have a plan for behavior management?", and "Am I willing to provide the social opportunities needed for my children?".

Principles of learning are a good place to gain an overall understanding on how to effectively learn (teacher), teach, and learn (student). Some of the best qualities of an effective teacher are patience and good planning and organizational skills. Here are a few more qualities of an effective teacher.

Our Roles & Other Useful Information

We are parents first in the mind of our children. As we transition into the role of teacher, we must allow time for this to happen. The homeschool environment will be one area that may move this transition along. Many homeschoolers set up specific areas in the home as the “classroom”. This is the area of the home where most of the academic learning occurs. This helps the parent and the child move into the roles of teacher and student. It is very important to set boundaries and convey understanding of rules and expectations within the classroom environment. The home area and the classroom area should be separate (as much as possible). This will help the parent and child begin to really walk out their roles as teacher and student. (Keep in mind, other environments such as the outdoors, the community center, or a library are also very effective educational settings.)

Time management is vital. As the teacher, you need time to plan and organize your teaching day. If you use a proprietary curriculum (paper or online) you will have more time to plan lessons and supplemental activities. If you create your own lessons, based off the TEKS, you will need more time to plan and organize. Each day must be structured in a way that both you and your student know what is planned. Furthermore, as the teacher you must also plan for days when things don't go as planned. This is perfectly normal. When you plan and organize for each day, it makes unplanned occurrences easier to handle. Flexibility is key!

Parenting, in general, can be stressful. Parents have many concerns and responsibilities that have nothing to do with academic teaching, such as financial difficulties, marital discord, mental health issues, and/or managing other children in the household, to name just a few. It is very important to think about each responsibility you have as a parent and how you plan to deal with these issues in a way that won't negatively affect your academic teaching efforts.

Behavior Plan & Questions to think about!

A behavior management plan will help the parent better transition into the role of teacher. Many parents have a specific parenting style that may or may not be effective at managing child behavior. Having a behavior plan in place will alleviate a lot of frustration. It is very difficult to teach a child exhibiting negative behaviors. A behavior plan is a must.

1) What kinds of behaviors do you foresee being an issue in your home school classroom? 

2) Are you able to manage these behaviors? 

3) Do you have rules and classroom expectations clearly written on your classroom wall? Does your child understand them? 

4) Are you ready to implement the rewards and consequences of your behavior plan?

Socialization 

Socialization opportunities are important for the homeschool teacher as well as the student. Social interactions are a vital part of the learning environment. These activities assist the child in learning about others, how to play with others, builds social skills, and encourages them to better understand “life outside the home”. As parents and teachers, our sole purpose in life is to provide the opportunities that will help our children survive in our society and world.

Community activities such as volunteering, practicing ordering food in a restaurant, buying things from a store, or helping someone in a store are great for enriching their understanding of the importance of community.

Play dates are wonderful for learning turn-taking, sharing, and for language and communication development.

Sports and other recreational activities help a child build active physical and strategic team-player skills.

In Conclusion

Being the leader in your child's education requires a lot. It can truly be one of the most rewarding parts of a parent's and child's life if the process is thought through and planned well.

Donate Locally, Where Your Money Actually Helps!

The month of April is when the nation recognizes autism spectrum disorder (ASD) or autism. Autism is a lifespan, neurodevelopmental disability that affects 1 in 59 children. It affects a person’s social communication and social interaction skills. It is also characterized by restrictive, repetitive, and stereotyped behaviors. During the month of April, many organizations raise funds through awareness walks and other events. On the national level, many of us are not sure where these funds go. This is why most parent-led autism support organizations do not lend a hand or give money to organizations that collect millions of dollars each year and only allocate a few of those dollars to help increase the quality of life (QOL) of caregivers and families.

However, money raised by local organizations is given back to our community by providing advice & support to caregivers and autistics, assistance with autism interventions and treatments, educational guidance, parent training, and respite (AKA caregiver breaks). The following non-profit organizations actively assist caregivers and autistics every month in and around Houston: Houston Disability Chamber of Commerce, Tee Time for Autism, Hope for Three, Paradigm Development Center, Special Needs Sibs, Spectrum Fusion, Inspiring Hands, Easter Seals of Greater Houston, the ARC of Greater Houston, the ARC of Fort Bend, Katy Autism Support, Reach for Kids, Man-II-Man, The Village, Langham Creek YMCA, Friends and Families of Asians with Special Needs, Mikey's Place, FEAT-Houston, Treasures of Joy, Camp Blessing, and local churches that have a special needs ministry. During this month of autism awareness and throughout the year, please consider giving your donations to one of these local organizations. Below are some specific reasons, caregivers and autistics in our local area need your help.

1) Interventions and treatments. After an autism diagnosis is received, the next step is typically locating interventions and treatments. Effective evidence-based autism interventions and treatments can cost between $2,500 - $8,000 per month (behavioral therapy, speech therapy, occupational therapy, and sometimes physical therapy). If a household income is below a certain amount, the state provides some assistance, for a limited time. If a household income is above a certain amount, a parent may be able to use private insurance to pay. However, most insurance providers shy away from paying because of how expensive treatments are. There are some insurance providers that do pay, but they usually allow limited hours per week.

Research shows better long-term prognosis when a child receives early interventions and treatments. This directly affects the quality of life (QOL) for the child, the parents and the family. Furthermore, it relieves an overall, long-term financial burden off the state, city, and county resources. 

2) Education. Some parents opt out of public special education for varying reasons. The most common reason is that many public schools do not have the ability to address the complex educational needs of autistics. Some parents use public special education opportunities but supplement by hiring a tutor. Tutors can cost from $15 - $35 per hour. Additionally, there are times when a parent needs to hire a special education advocate when dealing with the special education process. Special education advocates may cost between $25.00 - $75.00 per hour. Some parents enroll their child in a private school setting that specializes in educating autistics. Full-day, private schools can cost from $1,100 - $3,000 per month (although a few specialized schools offer scholarships to help a family defray some of the costs).

3) Lost wages. Autism is characterized by social communication deficits and repetitive, stereotyped patterns of behaviors. At an early age many children on the spectrum are "kicked out" of childcare

centers because of aberrant and disruptive behaviors. Some parents find in-home childcare opportunities and some have relatives that care for the child. However, many parents lose wages and sometimes their jobs because they have to care for their child. Additionally, employment status is affected due to taking off from work for a child's therapies and medical appointments.

4) Parent Mental Health. Did you know parents of autistics experience more stress than any other parent population? This is due to many factors such as aberrant child behaviors, lack of support, and feelings of helplessness. Many organizations in and around Houston provide respite services specifically for this reason. Respite services are an opportunity for the caregiver to take a break. Respite is vital for the parent.

• For the parent, there are a number of tasks that are required but are difficult to complete on a normal day of caring and managing an autistic, family, and work. (e.g., filling out applications for schools, services, or funding, calling various agencies, autism-related service providers, insurance companies, and/or managing other family/work-related tasks that never get accomplished). Another important benefit of respite for the parent is the ability to regain strength, stamina, and the energy needed to implement early intervention (EI) strategies. Research has clearly shown stressed parents are unable to effectively implement EI, which further exacerbates problematic child behaviors that directly affect a parent's mental stability.

Supporting Yourself Is More Than Making Money!

There is no amount of money in the world that can buy us more time.  Nor is there a holier than thou prayer that can make more time miraculously appear.  Twenty-four hours is all we get. Parents do their best to balance, juggle, and manage their time demands in a way that is healthy and productive for their family.  They use the skills and resources they have available.  However, parents of children with special needs cannot always rely on the skills and resources they have to keep their families moving forward. Many of these parents require more skills, resources, and support than parents of typical developing children. 

Prior to our daughter's diagnosis, parental care giving demands were typical for my husband and I.  We participated in social gatherings that were appropriate for an infant or a toddler.  We praised our daughter's numerous developmental milestones. Our time demands, during this period of our life, did not center around our daughter.  I decided to go back to school to pursue another degree while I cared for her at home.  My husband worked full-time and went to college full-time.  We were concerned about many of the same things as other families after having a baby.  And just like many other families, we kept ourselves motivated by continually looking ahead and seeing only success.  We had long, drawn out discussions about the condition of the world, our daughter's education, our business ventures, where we would eventually live, and when we would have another child.  Then one day an early child intervention (ECI) specialist told us she believed our daughter was autistic.

After we received a clinical diagnosis, all time demands centered around our daughter.  We did not spend one more second discussing anything relating to "the future".  Our perception of reality immediately scrolled in from the wide world of known and attainable possibilities to a vast world of inconceivable unknowns.  We became obsessively focused on our little girl.  We lost all sense of time, separated from community and culture, and quickly realized that our society was not set up to understand our autistic daughter and all her needs.  Our understanding, training, and education on "how to survive in this world's system" slowly became worthless. We were not prepared to dive into this huge pool of knowledge containing "what-ifs, how do I do that, where do I go from here", but we did.

Support

Numerous studies reveal the benefits of social support. However, after my daughter's diagnosis, I was in no condition to "socialize" even in a parent support setting. I was too overwhelmed to participate in support meetings, respites, and other social interactions. I was focused on the constant barrage of therapy appointments, managing severe behaviors, homeschooling, and helping my daughter overcome language & communication issues. I felt alone, isolated, and worried all the time.

In hindsight, I wish I would have participated in support meetings and respites during my daughter's early years. Why? Because I desperately needed resources, emotional support, and direction. Support meetings and respite provide these as well as genuine encouragement, new ideas, strategies, and a sense of "I am not alone." Furthermore, support meetings and respites strengthen us, re-balance our minds, and gives us room to breathe. This is important, because we are the active agents in our child and family's lives. We are the ones laying down the foundation upon which they can build and grow. We must take care of ourselves in order to effectively care for our children and family. 

Researchers have shown child early intervention (EI) strategies are most effective when the caregiver's emotional state is stable. Additionally, researchers have also shown that when parents are stressed and exhausted, there is an increase in problem child behaviors in our children.

Support meetings are available all over the city of Houston and in surrounding areas. Check the HARS calendar for one near you.

We are also Facebook!

Even the Strongest Need Support!

Raising and properly caring for a child with special needs requires support.  No matter how strong and durable you think you are, having a support network will only make you stronger.  Over the past twenty years, children diagnosed with autism (and other developmental disabilities) have been the center of intervention, treatment, and etiology studies.  Less attention has been focused on the caregivers that spend the most time with these children.  Now that treatment protocols, intervention strategies, and causal debates have risen up and steadied out, it is time for more attention to be placed on the emotional well-being of caregivers.

I have been hosting a parent support group for three years.  After all this time, there are certain issues that continually come to the surface.  The most concerning issue is the feeling of social isolation and the cyclical thought of "I live in a world of my own". 

Challenging child behaviors and social interaction difficulties have been implicated as two of the main factors why some parents feel separated from society, family, and friends.  These behaviors and other symptomatic expressions take a lot of time and energy to manage.  Many times, caregivers are just simply too tired to engage in social outings, store shopping, or going to church, which leaves them feeling isolated.

Compounding this feeling of isolation is the fact that many caregivers are so exhausted after their day-to-day tasks and responsibilities, they do not have the energy or the drive to participate in respites.  Many of the caregivers I talk to also struggle to get out of the house to attend parent support meetings.  That is why it has been my mission to continue our parent support meetings even when only a few people are coming.  Why?  Because I KNOW what it takes to get yourself together enough to show up at a social gathering.  If one person makes it out, then that meeting was set up for that one person.  Furthermore, it not only benefits that one person, it also benefits their family. 

This is why support is vital for survival. Support in the form of respites or "caregiver breaks" provide caregivers with time to regain their stamina and allow their mind and body a moment to rejuvenate.  Respites allow caregivers a moment to think about their children, their family, and themselves.  Support meetings are usually in a small setting around a table with parents in similar situations. They allow us a place to listen or talk to other people that are usually very willing to provide direction, resources, and emotional support.

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