Tag: Autism

Family On The Hill

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family on the hill

The announcer makes a small acknowledgement to the hundreds of people in attendance at the fireworks display to highlight our presence “hello to the cheapskates on the hill”

Fair comment?

We have a great local fireworks display. I think it sells out every year, the mulled wine is brewing, with beer on tap for the adults, sweet shops for the kids and lots of fantastic bright flashing toys you come to expect at these events. The fireworks are amazing and the bonfire is enormous, what is there not to enjoy?

Looking at it another way, it is a sensory bonanza! Unfortunately, sensory overload for Bojangles. That’s right, due to Bojangles having quite profound autism (for some reason I am trying to avoid the word severe, as it is often in the eyes of the beholder and labels don’t always help, but he does face severe challenges coping with everyday life and requires 24hr care), such an event is almost impossible for our family to attend and certainly to enjoy.

We don’t wish his siblings to avoid such occasions, as they are enjoyable and we want them to be able to participate and enjoy, so one of us takes them to a similar event the week before.

Now, in slight contradiction, it has to be said Bojangles loves fireworks. It appears, almost in the way, Vicki (mum) might enjoy a horror film. Whereby, it’s difficult to watch and scary, but strangely fascinating and enjoyable at the same time. There is pleasure and a mild horror at the same time. Bojangles bounces and flaps his arms in rapid motion and shouts unintelligible noises, with volume set at MAX. We know there is pleasurable excitement there and so we try our very best to find a solution.

However, all the other ingredients mentioned above are simply too much for him to process. So yes, we are the family on the hill and we would love to join you, but unfortunately can’t.

We all have our story and we shouldn’t be so quick to judge at times. Taking time to consider someone else’s view takes time and effort, but ultimately, might lead to a greater reward, understanding!

Also, it has to be said, if people can’t afford it, should we really be passing judgment so casually? The parents have found a solution within their means to please their children. If you don’t like it look the other way.

There isn’t an area designated for people in our situation (we wish there were), so, announcer, see you next year. Sadly, for you, we are not easily deterred! We fight these mini battles everyday. Parents. Autism. Life!

Thanks for reading.

Jamie

Co-Founder at Treezy

You can keep up to date with all our blog posts here: https://treezy.co.uk/blog-treezy/

NEXT UP: Local Recommendations For Places To Visit In Kent

Pumpkin Humble Pie

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pumpkin humble pie

So what could be better than a bit of pumpkin picking with the family. Well, it turns out, quite a lot!

Venturing out to public places with our son with autism (I will affectionately call him Bojangles from the song Mr. Bojangles, as he loves all things musical) and his siblings can always be a challenge. Sometimes you win and sometimes you just want to run and hide.

Our recent visit to a cold, damp field turned out to be a run and hide day (almost). Bojangles was already a little anxious before we left and so we didn’t know what to expect. There were quite a few people there, which probably created a bit of tension in Bojangles and both parents.

Bojangles vocal stimming tends to match the volume of his siblings, in the sense that if the baby or toddler start crying or falling out, he will find a way to match it and then raise it tenfold.

It transpired Bojangles found the whole experience overwhelming and the decibels went through the roof.

Vicki (Mum) decided to go for a walk with Bojangles to calm him down and leave me with the remaining children. The only problem was the route taken, past two big groups. Bojangles proceeded to momentarily screech upon passing the first group and then repeat the noise past the second. This unfortunately, made the whole group jump in shock and left a child near to tears. Mum apologised and swiftly moved on!

It was at this point we decided the best course of action would be to leave, tails between our legs…promptly! So we rustled up the gang and headed off to pay. The intermittent shrieks continued at the makeshift checkout (money box and counter style).

It felt like one big disaster. We shot each other a glance that said ‘maybe we should have stayed at home’. Instead, it turned out fine! The day was rescued by the two absolutely wonderful people at the counter. They immediately got a grasp of the situation, told us not to worry and that there was no need to apologise! Those few nice words made the world ok again, it really made the difference and I saw a little tear in the corner of Mum’s eye. A big ‘thank you’ to the lovely people at Broomfields Farm, Meopham. (https://www.facebook.com/MeophamPumpkins/). It really made the difference to our day.

Mum took Bojangles to the car for a few minutes to calm down and to shed a tear in private. I was left with money and children, so we enjoyed pumpkin soup, sausage rolls and chocolate cake. They were all delicious. After a while, Mum and Bojangles came into the seating area in the field to share some food and we all went home happy and relieved. We didn’t stay long, as we weren’t brave enough. But hey, we left happy.

The message of the day…

Expect the unexpected.

Know your escape routes.

Consider calling ahead to check it is suitable.

Never underestimate people and the power of kindness.

Never take four kids pumpkin picking, as you end up with six pumpkins (go figure).

Maybe just send dad next time!

At the end of the day, no one was hurt in the making of this story and the siblings were happy and completely oblivious, as only siblings to a brother with autism can be.

Thanks for reading.

Jamie

Co-Founder of Treezy.

ABLLS-R Overview

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ablls-r guide and protocol

ABLLS-R Overview

The Assessment of Basic Language and Learning Skills – Revised (ABLLS-R)

Developed by Dr. Partington, the ABLLS-R system is an assessment tool, curriculum guide, and skills-tracking system used to help guide the instruction of language and critical learner skills for children with autism or other developmental disabilities. This practical and parent-friendly tool can be used to facilitate the identification of skills needed by your child to effectively communicate and learn from everyday experiences.

The ABLLS-R provides a comprehensive review of 544 skills from 25 skill areas including language, social interaction, self-help, academic and motor skills that most typically developing children acquire prior to entering kindergarten. The task items within each skill area are arranged from simpler to more complex tasks. Expressive language skills are assessed based upon the behavioral analysis of language as presented by Dr. B.F. Skinner in his book, Verbal Behavior(1957).

The assessment results allow parents and professionals to pinpoint obstacles that have been preventing a child from acquiring new skills and to develop a comprehensive, highly personalized, language-based curriculum.

The 2006 version of the ABLLS incorporates many new task items and provides a more specific sequence in the developmental order of items within the various skill areas. Significant changes were made in the revised version of the vocal imitation section with input from Denise Senick-Pirri, SLP-CCC. Additional improvements were made to incorporate items associated with social interaction skills, motor imitation and other joint attention skills, and to ensure the fluent use of established skills.

The ABLLS-R is comprised of two documents:

1. The ABLLS-R Protocol is used to score a child’s performance on the task items and provides 15 appendices that allow for the tracking of a variety of specific skills that are included in the assessment. The Protocol includes a set of grids that comprise a skills-tracking system that makes it possible to observe and document a child’s progress in the acquisition of critical skills.

2. The ABLLS-R Guide provides information about the features of the ABLLS-R, how to correctly score items, and how to develop Individualized Education Program (IEP) goals and objectives that clearly define and target the learning needs of a student.

Clinical Significance of the ABLLS-R

Leading researchers in the field of behavior analysis (Aman et al., 2004; Schwartz, Boulware, McBride, & Sandall, 2001; Thompson, 2007; Thompson, 2011) and professional organizations (American Medical Association, 2014) identified the ABLLS-R as a useful tool that can guide parents and professionals seeking to teach language and critical learner skills to individuals with autism.  Further, several researchers administered the ABLLS-R to measure the performance of individuals across different skill areas (e.g., Daar, Negrelli, Dixon, 2015; Foran, Hoerger, Philpott, Jones, Hughes, & Morgan, 2015; McLay, Carnett, van der Meer, & Lang, 2015; Stock, Mirenda, & Smith, 2013; Valentino, Shillingsburg, Conine, & Powell, 2012). The widespread use and popularity of the ABLLS-R across leading researchers and professional organizations demonstrates the strong clinical significance of the assessment.

 The Validity and Reliability of the ABLLS-R

Many of the popular assessments do not contain adequate empirical support for the psychometric properties (i.e., validity of the assessment and the reliability of the scores produced) of the assessment.  Recent research on the ABLLS-R provides empirical support showing that the ABLLS-R contains strong evidence of validity and that it yields reliable scores.  In a recent study, Usry (2015) documented evidence of content validity when she found that expert raters from the field of behavior analysis rated the majority of the ABLLS-R items as “essential.”  Another group of researchers obtained evidence of convergent validity as scores obtained from the ABLLS-R correlated strongly with those from the PEAK-DT and the Vineland II(Malkin, Dixon, Speelman, & Luke, 2016).

The assessment literature currently contains evidence of three forms of reliability including interrater reliability, internal consistency reliability, and test-retest reliability.  In her study, Usry (2015) examined and obtained strong evidence of interrater reliability across the ABLLS-Rscores obtained from her participant sample (ICC = .95, p < .001).  In addition, a recent study by Partington, Bailey, and Partington (2016) assessed and found strong evidence of internal consistency and test-retest reliability.

The ABLLS-R is sold as a set that includes the ABLLS-R Guide and a Protocol to ensure that parents and professionals have the instructions as to how to use the ABLLS-R. Additional protocols can be purchased separately by individuals who have already purchased a copy of the ABLLS-R Guide.

We hope you found this ABLLS-R overview article useful. Please get in touch if you have any questions.

Our Autism Journey by Debora Thivierge

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Debora Thivierge Our Journey

By Debora Thivierge

When my son Jason was diagnosed with autism at twenty months old, I was lucky enough to discover the book “Let Me Hear Your Voice” by Catherine Maurice. Her story became a beacon of hope for me; a light through the early darkness of Jason’s diagnosis. She inspired me and set me on a path to help my son, myself, my family and others on this autism journey.

 

Hope was a critical component of my family’s survival. The word hope is defined as “the emotional state which promotes the belief in a positive outcome related to events and circumstances in one’s life.” The opposite of hope is despair. I was determined that despair would not define my emotional state, as it would most certainly lead to detrimental outcomes for Jason.

 

Not only did Dr. Maurice’s personal story give me the hope I needed, but it also gave me scaffolding upon which to build my son’s treatment plan. After reading the book, I realized that there could and would be significant progress if I utilized applied behavior analysis (ABA) as my main course of treatment.

 

In 2002, my goal as a parent was to educate myself about autism. The more I learned, the more I recognized the need to educate other parents facing the challenges of autism. I decided to start a foundation that would provide information and resources to families and professionals on Long Island focusing on ABA and its efficacy for children with autism.

 

I decided to name the foundation ELIJA, an acronym for “Empowering Long Island’s Journey through Autism.” ELIJA’s mission is to bring top experts in the field of autism/applied behavior analysis here to Long Island, to give workshops and presentations where they can share their knowledge of current research and treatments, and to help families and professionals advance their skills in implementing ABA programs.

 

Having these presenters come from all over the country gives parents, professionals and caregivers direct access to information that they might not otherwise have access to. It also gives them the ability to become fluent in the many different tools and techniques of ABA and how to work with their children on a day-to-day basis. Over the past eleven years, the workshops have educated, inspired and instilled hope in thousands of people, including myself. It was and still is so important to me to help parents understand that their role as educator is one of the most crucial components in research outcome data.

 

I quickly discovered that parents were desperate for information and this kind of support. Having the ELIJA Foundation as a resource gave them an opportunity they wouldn’t have had otherwise – to obtain information directly from autism professionals actively involved in research and education.

 

The workshops gave parents and professionals the opportunity to network with each other informally. The setting was comfortable and inviting. We would provide lunch, so that participants could focus on meeting, talking, sharing information and experiences and, most importantly, creating lasting connections.

 

Parents of children with autism often feel extremely isolated, from family and friends who may not understand autism and the challenges they are facing, and from the community at large. ELIJA’s workshops gave opportunities for families to feel connected, to feel not so alone and to find shared interests with other families. When professionals, families and educators feel connected, they tend to be more effective in their implementation of plans and advocacy for the children they work with. These connections bring some measure of relief to parents, who are often exhausted due to lack of feedback and support in the community and in educational settings.

 

In retrospect, I look back and wonder where Jason would be today, had I not done all this intensive instructional training, and kept on top of his curriculum, especially the goals and the skills that we were teaching him. I knew his long-term outcome would be affected by our choices of what to teach him, and what not to teach him. These choices were sometimes challenging, but I was able to look at the data tables to determine that his biggest deficit was language.

 

I learned to change my expectations, and give and take in terms of Jason’s progress. I accepted the fact that he may never write neatly or clearly, or be able to complete a 500 piece puzzle or climb a jungle gym or run a marathon. That’s ok. Twelve years after Jason’s diagnosis, he still has autism, but I can’t even imagine where he would be today without our hope, determination and the intensive interventions we have painstakingly implemented. Our family’s journey through autism continues.

 

About the Author: Debora Thivierge, BCaBA, received her BA in Sociology from Hofstra University and is a Board Certified Assistant Behavior Analyst. She serves as the Executive Director and Founder of The ELIJA School and Founder of The ELIJA Foundation. Debora has volunteered her time to numerous Autism groups such as Nassau County’s Department of Health Early Intervention Coordinating Council, New York State Association of Behavior Analysis, Nassau County Autism Coalition run by the County Executive and currently serves as a board member of The Behavior Analyst Certification Board® (BACB®). For the past 13 years, she has been providing advocacy to families and conducted training workshops to promote evidence based instruction for families and educators who have been touched by Autism. She has a 15 year old son with Autism.

ELIJA

11 Laurel Lane

Levittown NY 11756

Tel. 516-216-5270

www.elija.org

Deb@elija.org