Can we talk?

I stood in the kitchen watching Meghann pointing into the air. This was not the first time I stood watching my little girl struggle to communicate. I was trying my best to follow the path of her finger. I felt the tension start to rise in the room as if I was immersed in a pot of water ready to boil. I could tell it was going to be one of those days. It started the same way each time. A small request from Meghann that I didn’t  understand. Most of the time I figured out what she needed. Meghann was diagnosed with cerebral palsy at 11 month old. She is considered nonverbal and uses a wheelchair. She is unable to communicate using sentences and words. However she mastered alternative 

methods to communicate. She uses various techniques such as gestures, actions, facial expressions, and body language to communicate. Sometimes using all of these approaches is not enough, and Meghann would have a meltdown.  Her outburst of screaming was always understandable and heartbreaking.  It was hard for me to reprimand her for the out of control behavior. I understood her frustration to be unable to communicate her needs. I couldn’t blame her for being angry with me for not guessing instantly. I should be able to understand her all the time. I was her mom. Unfortunately I couldn’t read Meghann’s mind. It was during these moments that I disliked cerebral palsy. I detested cerebral palsy for making me feel helpless. I detested cerebral palsy for making it so difficult for my daughter to speak. Cerebral palsy was not a blessing, it was not a gift from god and it was not welcome in our life. Sometimes it just sucked !    I couldn't  blame Meghann for lashing out.

It wasn’t her fault she was born with cerebral palsy. I am sure she was a billion times more annoyed than me. One thing I was happy about was that Meghann didn’t have more behavior problems due to her lack of expressive skills. Expressive skills are the ability to put words into sentences that make sense. Due to being diagnosed nonverbal Meghann’s receptive skills are higher than her expressive skills. This means her ability to understand information is intellectually higher than her ability to express herself. I believe some of Meghann's negative behavior is

due to her lack of communication. 

Communicating is important to all of us. It connects us to others, it allows us to express ourselves, it assists us to understand people and their emotions. I was willing to try any means possible to aid Meghann with her ability to communicate with me and her peers. Meghann was fortunate to have a team of professionals working with her to ensure she was successful in all areas of her life. When Meghann’s  speech therapist at school helped me put together a communication book  things changed in our house.

 Along with the communication book, I started to teach Meghann a few signs in ASL. (American sign language) Meghann’s doctor did not want me to teach Meghann sign language. In his opinion, more people understand augmentative devices (electronic devices used to communicate) than sign language. I disagreed. I researched the basic ASL signs in a book. Within a short time, Meghann was using sign language like a pro to communicate. With the help of ABA therapist ( applied behavior analysis), speech therapy, teachers, 

occupational therapist, sign language, communication device, and the communication book Meghann’s frustration improved. Her 

(Above a page from

 Meghann's 

communication book)

behavior also improved significantly. To this day, her communication is a work in progress. Meghann and the staff at her independent home and workshop continue to work on techniques instructed by an ABA therapist. We continue to work with Meghann and encourage her 

to communicate using whatever means possible. 

What is an ABA therapist? Have you ever wondered what an ABA therapist can do for you and your child? Do you have questions for a ABA therapist ? 

This week the online support group meeting for parents/caregivers of special needs children and adults will feature  a Board Certified Behavior Analyst guest speaker. 

(Meghann above with her current dyanavox)

 When: Tuesday, July 11th at 7 pm

Where: Zoom meeting room: ID number 859-589-845

Guest speaker:  Ro Ecklund - Board Certified Behavior Analyst

Ro has been married for 47 years to a minister. They have two children. One son employed by Zuric Insurance in Chicago and a daughter in NJ who is an assistant assessor. Ro and her husband have three granddaughters.

Below is a list of Ro Ecklund credentials.

• Board Certified Behavior Analyst (BCBA) since 2003. Requires at least a Master’s Degree in specific field(s).
• A degree is an MS in Experimental Psychology with emphases in learning theories and behavior modification, from Western Illinois University in Macomb, IL.
• Undergrad in Psychology (BA) was from Knox College in Galesburg, IL.
• completed Master’s plus work at Southern Illinois University specifically in Behavior Analysis.    
• Worked in Mental Health prior to switching to ID
• Worked with ID for almost 25 years; originally at KCCDD and now as an independent contractor.
• Have been part of a couple state committees
  • Have served on the North-Central Network’s Clinical and Administrative Review Team (CART) for over 20 years.
  • Sat on an Ad-Hoc committee to discuss guidelines on “punishment.”
  • Served as Secretary for Behavior Analysis Society of Illinois for 3 years.
• Was a Certified Snoezelen Trainer - Snoezelen being multi-sensory therapy used with individuals with ID/Autism. "This is a not-so-behavioral therapy with very little hard science. That does not mean that I don’t support it as an activity/approach that can provide benefits to certain individuals. I provided training to staff in Illinois, Iowa and Indiana when they put in Snoezelen installations." 

Ro can be reached by email. roecklund@gmail.com

For more information about  BACB  Board Certified Behavior Analyst   bacb.com   

Did your child have a difficult time during the 4th of July holiday? Were the noises from the fireworks too much for your loved? What can we do differently to help our loved one cope with noises that are               

overstimulating or bothersome? 

Some of the topics that will be discussed on Tuesday night (July 11th @ 7 p.m.) will be behavioral methods that might be used to help individuals deal with loud noises.  Systematic desensitization, relaxation, positive reinforcement, and cognitive rehearsal strategies/social stories will be explained and discussed at the meeting. There will be plenty of time for questions and answers during the meeting.

To learn more about the Dynavox (Meghann's device) check out the web site www.dynavoxtech.com/


Upcoming News

August support group meeting
When: Tuesday August 1^{st    
              (The first Tuesday of every month for 1 hour)}
Time: 7.p.m
Where: Zoom online meeting room-     https://zoom.us
              ID meeting room number  859 589 845
Topic: Open discussion.

Do you have a challenge coming up in your loved ones life? Do you have a win or milestone that you want to celebrate?  Are you struggling with school issues?  Stop in at the meeting and  share.   Why not meet and lend support to each one another on August 1^st  at 7.m. for an hour? 

Note: You do not have to be a parent to join the support group. If you are a grandparent, sister, brother, aunt or uncle you are welcome to join our group.

Zoom information.

1. Go to- https://zoom.us
2. One time sign in
3. Enter ID number 859 589 845
4. Password if asked- smallsteps

If you would like to call in on the phone use the free number. 646-558-8656

Feel free to contact me to discuss future topics, issues, suggestions, or for more information.  

Jill 

jillianm1963@hotmail.com

815-866-3776