All About Autism

I recently read the article “How School Systems Create *That* Parent for Children in Special Education.” I’m sure that some would have considered me *that* parent at one time. What does *that* parent look like?

Here she is: a parent who establishes goals for her child, goals that she believes are reachable. She is not discouraged by those that say, “your son will never do that.” She is determined to get the very best programs available for her child. “Appropriate” programs are not enough. In her mind, she is not demanding, she is determined. She is not annoying, she is persistent. However, in the eyes of some *that* parent is demanding, annoying, unrealistic, and unreasonable.

At the Barber National Institute, I encourage our faculty to actively engage their students’ parents. Find out what the parent’s hopes and dreams are for his or her child. Establish a plan to assure ongoing communication between home and school. I remind them that often, lack of communication or miscommunication is the root of misunderstandings that lead to labels such as *that* parent.

Undoubtedly, the journey many parents take to get their children the support and services they need can be an arduous one. And yes, parents must be their child’s greatest advocates. At times, they may need to stand up for what they believe their child needs. From my perspective, it’s great to have the parent’s input and active participation on the team. Together we will accomplish so much more for our children. Let’s hope that in all our schools will adopt a welcoming attitude, erasing the need to be *that* parent.

Read the original article here: http://www.huffingtonpost.com/laurie-levy/how-school-systems-create_b_8806948.html

As I read some information about February being National Children’s Dental Health Month, I thought back to Ryan’s introduction to his dentist, Dr. Garcia. Dr. Garcia is a pediatric dentist and I had heard many families speak highly of him in the past, so I knew Ryan was in the right hands in selecting him for his dentist. Dr. Garcia’s office is very child-friendly and welcoming to both parents and children who might otherwise be anxious about their dental appointment. Over and above the physical environment, all of the staff are exceedingly kind and gentle.

Ryan’s first visit went well and I knew I had made the right selection. We kept our twice a year schedule and over the years got to know Dr. Garcia and his staff very well. There were never issues, except one morning when Ryan was about seven years old. We had a challenging morning, and Ryan was agitated. I didn’t want to cancel the appointment at the last minute, so we went and I alerted Dr. Garcia of our difficulties. The appointment went fine, until… Dr. Garcia had his fingers in Ryan’s mouth for the examination and Ryan closed his mouth – hard! I think that action surprised Dr. Garcia more than it hurt him, however I was embarrassed and displeased with Ryan’s actions. That afternoon, Ryan and I discussed his behavior: why he did what he did, and what would be the consequence. Ryan decided he wanted to write a note of apology to Dr. Garcia. He did and we delivered it to his office the next day and apologized.

Many years later, Dr. Garcia pulled this letter from his file and we smiled and thought how far Ryan had come over the years. Despite Ryan’s age, Dr. Garcia still welcomes Ryan in his practice. Erie, PA is so fortunate to have a man of Dr. Garcia’s expertise!

I did some research on activities to do at home or at school for dental month and wanted to share them with you. Enjoy!

Activity Sheets:

ADA ACTIVITIES 2016

I recently read a blog by a mom who looked back at what she’s learned in the ten years since her son received his diagnosis. This made me stop and think. It’s been 20 years now – what have I learned?

• It is critical that you maintain an attitude that your cup is always half full and not half empty.
• Focus not on the very best days your child has, nor on his worst, but on the average day.
• Regardless of the overwhelming challenges you face, God will always give you strength to move on.
• Set high goals for your child. Don’t limit their potential based upon what others tell you.
• Accept that learning will occur in small steps, but that small steps will lead to a great distance in the long run.
• Similarly, learning will never end for you or your child. Embrace this and be open to the changes that might come as a result.
• You can be a trailblazer – not only for your child, but for all children with autism. It’s never easy, but you will make a difference.
• Overall wellness is essential not only for your but for your child. This includes healthy eating, exercise, and making time for prayer, meditation… or whatever works for you!
• While you will reach a point of acceptance of your child’s diagnosis, it’s okay to still catch yourself dreaming of your child attending college, living independently, and finding people to share their life with.
• All parents know that your love for your child never ceases, but rather inspires you to reach new heights and aspire to do your best. Being a parent of a child with autism is no different.

The journey continues – who knows where the next 20 years will take us!

We had a new student start last week. On his first day, he announced: “This is the best school I’ve ever been to! And you know, I’ve been to a lot of schools.” Comments like this make me feel so proud that we have created a school and community that students and families want to be a part of.

At the Barber National Institute we celebrate each of our children as we focus on their strengths and talents. It’s our motto that “If a child can’t learn in the way that we teach, we must teach in a way that the child can learn (Ignacio Estrada).” We are fortunate in America that we have myriad range of schools to choose from – public, private, charter, religiously affiliated, independent, and even home schooling. This week, we celebrate the opportunity for choice in education through National School Choice Week.

National School Choice week is a large annual celebration that includes over 16,000 events across all 50 states and around the world. Nearly 250 governors, mayors and county leaders have issued proclamations that recognize this week. At the Elizabeth Lee Black School, we are celebrating by writing about or drawing on “What I Like About My School,” a dance with school spirit scarves, and having pictures taken with the classroom teacher.

The students are showing pride in our school and celebrating the choices we offer. We’ll be sharing our events with the National School Choice Week website, taking part in a larger celebration across the nation! Will you be celebrating this week?

https://schoolchoiceweek.com/

Scientists and researchers are constantly uncovering more information related to autism, offering insights into the origins, possible causes and even at times potential cures. I come across dozens of articles on a weekly basis, some of which seem more important than others. I thought I would share on a monthly basis stories that caught my eye.

~Maureen

Antidepressant Use During Pregnancy Linked to Autism

Women in a new study who took antidepressants during their second and third trimesters of pregnancy showed an 87% increased risk of having a child with an autism spectrum disorder, compared with women who did not take medications for depression while expecting.

Read the full article here.

Autism Screening Reaching More Young Children, but More Work Remains

Researchers found that autism prevalence among 4-year-olds was 13.4 per 1,000 children. Among 8-year-olds, autism prevalence was 14.7 per 1,000 children. Four-year-olds, who in this study were born in 2006, tended to be diagnosed earlier, at 27 months. Eight-year-olds, who in this study were born in 2002, were diagnosed at a median age of 32 months. That finding suggests that over a four-year time span, early evaluation became more widespread.

Read the full article here.

Very Premature Babies at Greater Risk for Autism

Nearly 30 percent of extremely preterm-born children had developed autism spectrum disorder symptoms. Amongst children born after full-term pregnancy, the corresponding figure is 1 percent. Scientists believe that because brain grows best in the womb, premature birth can disrupt the organization of cerebral networks.

Read the full article here.

Trio of Autism-linked Molecules Orchestrate Neuron Connections

New research from Duke University reveals how three proteins work in concert to wire up a specific area of the developing brain that is responsible for processing sensory information. The findings  may also lend insight into brain disorders including autism, depression and addiction, because previous research has linked these proteins individually to those diseases.

Read the full article here.

Tune in next month for an update on autism research!

This quote from Dr. Martin Luther King, Jr. was so meaningful to me, I decided to post it again this year. Our daily challenge is to move forward. Some days it’s easy, some days it is not. But I encourage you to accept this challenge with me!

~ Maureen

Are you one of those men or women who say to yourself, “I really should get more organized?” Then January is the month for you. I recently read that American women spend 55 minutes a day looking for lost or misplaced items. Yes, this is a challenge for all of us but when we think about the difficulty youngsters with ASD often have with core organizational skills, it’s more of a challenge than simply misplacing items. The term “executive functioning” (EF) is often used to describe “brain-based skills” that begin to develop in the first years of life and result in “the ability to maintain an appropriate problem solving set for attaining a future goal.”

Approximately 80% of children with ASD are estimated to have problems with EF. Possible difficulties include:

• Organization: difficulty in organizing the steps of an action in order to follow a request
• Impulse Control: limited control of impulses to sufficiently participate in structured situations
• Planning Memory: lack of identifying the sequence of events necessary to accomplish a task
• Attending: difficulty to focus on the task requested
• Sustaining: ability to maintain strong performance for a short period of time only
• Shifting: trouble with transitioning from one activity to another, even when it’s preferred
• Emotional Control: limited control of emotional expressions

These sound overwhelming but there are some very specific action plans we as parents and teachers can implement. All members of your child’s team need to be involved in this discussion so that there is consistent carry over between the home and the school. Here is one example of an action plan to assist your child with his/her schoolwork.

Recommendation 1 – Help your child organize his/her papers and homework. You can do this by having a folder in his/her backpack with notes for the teacher, and separate folders for each subject area.

Recommendation 2 – Establish a routine for your child to follow in going through his/her backpack. At first, this will need to be a supervised activity or the folders and their contents could all be dumped on the floor.

A PECS schedule can be a great visual support.

Recommendation 3 – Help your child figure out what he/she needs to do for each assignment. Do you need a pencil, crayons, or scissors? What other tools or materials would be helpful?

Recommendation 4 – Consider whether visual supports would help your child be more independent and use newly acquired skills across different settings. There are simple and inexpensive visual activity schedules, self-monitoring activities, and apps that can address your child’s needs for a visual schedule to be successful.

Ryan, I, and his team diligently worked on overcoming his numerous challenges with EF. No, we never found a “cure” but with lots of practice, his ability to organize, plan, and act certainly has improved significantly. Involve your team, take it one step at a time, don’t get overwhelmed, and I guarantee you’ll meet with success.

Sources:

Improving Executive Function In Children with Autism Spectrum Disorders

Executive Function & Theory of Mind

Teaching Organizational Skills to Children with High Functioning Autism and Asberger’s Syndrome

January is national thank you month! I was preparing to write a blog on this topic and looked back to January of last year to see what I had written. As I re-read, I thought to myself the blog was right on and contains thoughts similar to what I would want to address today. So I decided to repost last year’s blog – I hope you find some good ideas, and “Thank you” for sharing your recommendations with me as well!!

~ Maureen

Originally posted January 25, 2015

“Thank You.” These are two words that I taught Ryan as soon as he was speaking. To me, being polite is an important virtue for parents to teach their children. As Ryan progressed through school, one of the positive comments his teachers always gave me was, “He is so polite. I wish all the students were like him.”

Did you know that January is National Thank You Month? This is the perfect opportunity to find the time to celebrate all that you are grateful for. I am grateful for so much. Good health; supportive family and friends; creative, hardworking co-workers; working for an organization whose goal is to make dreams come true for children and adults with disabilities … to name just a few!

It’s easy to forget to pause and express your gratitude to the people in your life who are there for you day-in and day-out. There are also those who you may seldom see but who have played an important role in your life at some point. This is the perfect month to reach out both! Below is a handful of ways to say thank you:

• Write a handwritten note or letter to someone you are thankful for
• Take a friend out to coffee or lunch and tell them you appreciate their support
• Surprise a loved one with flowers and tell them you value all they do
• Start a gratitude journal, writing at least one thing a day that you are grateful for. Ryan and I daily stop and tell each other something we are grateful for.
• Thank your coworkers for their hard work, acknowledging that often it takes a team to get the job done

And don’t forget to thank people for the simple things: bagging your groceries, cashing you out at the gas station… The list goes on!

On New Year’s Eve, tragedy struck in Allentown, PA. Every parent’s worst fear: a small, 5 year old boy with autism had wandered off during a family party at the house. Two days later, everyone’s worst fears were realized. Moments such as this remind us of the importance in trying to prevent wandering, but also in being prepared for it should it happen.

Over the years, I have shared some safety measures you can take for wandering children. Below I have revisited the most important tips that have helped me over the years. Remember – preparation is the most important thing you can do in the event of an emergency!

Identification – Today, there are many options available. ID cards that include your child’s picture, height, weight, hair/eye color and any other identifying marks are the most traditional and least expensive method, but ID bracelets, necklaces, and even temporary tattoos are other options. Should your child be found by a stranger, ID cards can relay important medical information as well as whom to contact in the event of an emergency.

Tracking Devices – Oh, the power of technology! Today, there are several varieties of tracking devices. Some are GPS style bracelets that are typically facilitated by local law enforcement. Others are small units able to be placed in a child’s pocket or backpack that you can monitor from your phone or computer. Whatever your preference, it’s important to remember that tracking devices are a last measure device – close adult supervision and home security should always be taken as a primary measure of your child’s safety.

Water Safety – I have mentioned this several times, but I am so thankful that Ryan learned to swim at an early age. Although I am pleased he finds it therapeutic and it is a good form of exercise, my primary intention was to prevent drowning should Ryan ever wander towards a body of water. Remember that swimming lessons with a child with autism may go more slowly, but it is well worth your patience!

Community Support – A very simple yet often overlooked step. Get to know your neighbors. Plan a brief visit to several surrounding homes to introduce yourself and your child, describing some of the positive as well as challenging behaviors of your child. I always emphasized the issue of wandering an stressed that if a neighbor saw Ryan out by himself to please engage him in conversation and walk him home. You can provide your neighbor with a small handout with your contact information.

Home Security – There are many inexpensive possibilities. I have an alarm system on my doors so that whenever the door opens, a bell rings. This has been very helpful – especially when you are not in the same room as your child.

911 Call Center – in Erie and many communities these centers maintain a special needs registry. I signed Ryan up many years ago… again, another precaution.
Practice, practice, practice! Since Ryan was a preschooler, we’ve talked about staying close to me at all times when out and about. Our term is “stuck like glue.” Whenever we’re out I expect a crowd. We role play and talk about what he’s supposed to do and what he should do if he becomes lost.

My prayers go out to all families who have experienced such tragedies! Please feel free to share any helpful tips I may have missed below.

2015 was quite a year! In bringing in the new year, I thought it would be fitting to spend one last moment reflecting on the great accomplishments of this past year, before turning forward to 2016. Thank you to all of you who made such a great year possible! Some of my personal favorite moments included:

• Learning ELBS was the recipient of the National Association of Private Special Education Center’s award for “Leadership and Innovation in Special Education”
• The continued impressiveness of the EBLS staff – their top quality, innovativeness, and sheer drive to succeed with children who others have written off. Regardless of the challenges, they continue to return because they believe in the children and the mission. Without them, none of this would be possible!
• Our wonderful ELBS families – Theirs can be a tough 24 hours a day but they never falter always trying to make their childrens’ lives the best they can be and to keep working on the team
• The support of our Erie community – Countless times over the past year I have been humbled and in awe of how our community is always open to helping those in need and spreading kindness
• The expansion of our programs to serve children with ASD and ID who present challenges to public schools
• The conclusion of our two-year Artist-in-Residency program with Jude Shingle, which allowed us to explore iMovies and other forms of Social Modeling in the technology world for the first time

I anticipate that 2016 will bring many new opportunities and exciting adventures. I hope that you will continue to join me through this journey!