School days

Meghann and bus driver

The alarm sounded at 5:30  a.m. I quickly reached over and hit the snooze on the alarm without thinking. I lay in bed mentally preparing myself for the day. Meghann was diagnosed with cerebral palsy at 11 months old. For three years I helped her with diapering, changing clothes, putting on AFO’s ( ankle foot orthotic brace), getting into her wheelchair, combing her hair, brushing her teeth, eating, charging her augmentative device, administering medicine, and so on. Today’s routine was different. It was Meghann’s first day of preschool. She had spent everyday since she was born with me. I was blessed to be able to work out of my home and care for her. I knew this would be a difficult day for both of us.

Meghann participated in an early intervention 0-3 program for developmentally challenged children and a home based program. She received physical, occupational and speech therapy every week from Easter Seals. I wanted  Meghann to have every opportunity possible to succeed, and school was the next step. I thought about the countless trips to Peoria for services that Meghann had received up until she began school.

Prior to beginning Meghann's school years

Much of the beginning of Meghann’s life was spent driving an hour to Peoria for neurological appointments, cerebral palsy clinic, MRI appointments, speech, occupational, physical therapy, equipment repairs, AFO ( ankle foot othosis or braces) fittings and more. Many of these services would be eliminated and continued in school. I was thrilled that Meghann would receive services throughout her school days. I still had mixed emotions and concerns about her traveling 100 miles a day to school. It would be a long day for a three year old with special needs-especially when winter would begin. It was not an easy decision to send Meghann to school in Peoria. I had to weigh all of the options carefully. For example our school district was not equipped to provide the amount of services Meghann needed. Peoria district would provide as much therapy and learning assistance she needed in school. I was disappointed there was not a program available in our district. Another concern I had about Meghann traveling to school was socially. The long days would make it impossible for her to have a circle of friends in our community. However in school she would be exposed to children with all different abilities. I also had to trust our home district to hire a bus driver who was capable, experienced, and comfortable with special needs children. It was not my dream to trust a bus driver I hardly knew to deliver my three year old to school and home safely every day. It didn’t help when each morning I put Meghann on the bus she would cry. I felt horrible, and my guilty mom meter went through the roof. I wanted to keep my little girl in a protective bubble away from everyone.

Meghann and great-grandma

I was jealous of other moms. While I was planning to send my three year old to school 50 miles away they were having play dates, going to  parks, and enjoying the developmental milestones together. I wished that I didn’t have to send Meghann so far away to school. Was I wrong to be jealous?

I ached for the simple decisions of parks, playdates, and running after a toddler. These simple activities would never happen for Meghann. Meghann would never walk, have playdates or run away from me. Would I be a bad mother to keep my little girl at home in a bubble and not send her to preschool?   Would it be wrong not to allow Meghann to experience all that school had to offer in Peoria? I knew in my heart what the answer was to these questions.  I must pop the protective bubble and do what was in Meghann’s best interest. I wouldn’t be fair to keep Meghann at home. She deserved an education and an opportunity to experience everything life had to offer.

Meghann deserved an education and an opportunity to experience everything life had to offer.

Meghann on school trip

She would receive all the therapy that she needed in school and be in a classroom with other children who had similar abilities. My head told me it was reasonable, but my heart broke for the things at home she would miss. I also realized that even if she was home with me she would never be a part of my friends lives like I  wanted. Meghann’s  developmental delays would always leave her behind, and I needed to get used to that fact. Sometimes instead of giving up on our dreams we have to rewrite them and that’s okay.

 For the next 20 years Meghann and I got up at 5:30 a.m. Sometimes, I had a more difficult time rolling out of bed than Meghann. I am not ashamed to admit that working without Meghann at home motivated me to jump out of bed in the dark early mornings. I am sure most people can relate to me. I have seen pictures on social media of parents celebrating the first day of school while their children scowl at them. Meghann was never one of those scowling kids. She loved school. She couldn’t wait to get up in the morning, and get on the bus. There were days Meghann would cry because I told her she couldn’t go to school when she was sick or it was snowing. I knew I was fortunate that Meghann loved school, her teachers, therapists and classmates.  I also realize that I made the right decision to bus her 100 miles a day to school. If it wasn’t for the fantastic therapists, teachers and assistants Meghann would not be where she is today. It is evident when I look at Meghann the decision to send her to preschool, grade school and high school in Peoria was the correct one.

Meghann in stander at school

Do you have a story, memory or picture about your child’s school days?

Join the online support group on September 5th.

Meghann on school trip

What:  Online support group for parents/caregivers of special needs children and adults.

When: September 5, 2017 at 7 p.m. Tuesday

Where: zoom.us ID number: 859-589-845

or phone number: 646-558-8656

Topic: Open discussion

For further information email me

jillianm1963@hotmail.com

The guilt meter retires

Meghann and Abby

Meghann with therapist

One morning Meghann’s bus driver had an idea.  He told me to step away from the car window after I put Meghann into her car seat. He asked me to look at Meghann after a minute. Confused I did what he asked. I strapped Meghann in her car seat.  Her lip pouted out, and the tears  welled up in her eyes. As my shoulders slumped, I stepped away from the station wagon window. I waited a minute while the car idlied.  I leaned over, and I peeked back in the window at Meghann.  I was shocked!  You guessed it ! She had stopped crying. I couldn’t believe it. For the past several weeks I thought Meghann was crying all the way to school.  I could hardly keep my mind on my work.  I was annoyed and relieved at the same time.  I tend to believe this was Meghann’s way of telling me that she missed me but not enough to stay home from school.

Meghann and classmates

Meghann in school

Please share information about the online support group with other parents/caregivers of special needs children and adults. Or pass my email to them. jillianm1963@hotmail.com

Thank you!

Sticks and stones may break my bones but names will never hurt me.

Judgmental is defined by Google as having or displaying an excessively critical point of view.

Why are unkind words easier for us to remember? I was recently tested by some ugly words of an individual that I have never met. Most of the time I find it easy to rise above the criticism or judgment of others. Then there are the times that I am tested. Words can be very damaging and hurtful.

I was stunned at first by the insensitivity of this individual because we didn't know each other. My first reaction was to defend myself. I went over in my head one judgmental sentence at a time. I looked at the nasty words in front of me one by one. I tried to figure out the motive. What could be the motive? Was there a motive? Why was I hurt? WHY was I hurt? Why did I care? Really!!! It was obvious after a few days that I needed to do some soul searching of my own. Sometimes there are no easy answers, and there isn't any way of understanding another person's actions. I decided that instead of responding to someone who is filled with misinformation and bitterness I would rise above it. I believe I supplied them with the best gift. My silence. I applaud myself for not engaging. I love my friends and family. I know they love me too. I am secure in who I am today, what I have done, and where I am in my life. I am not perfect. I never claimed to be perfect but I know one thing. I control my behavior. I choose to rise above the words.

(Meghann with her cousins Peyton and Andrew)

Meghann with cousins Peyton and Andrew 2017

                                                       

Everyone has said hurtful things to someone when we were young. I am no exception. I am sure I have said or done hurtful things to others intentionally and unintentionally. When people mature into adulthood we hope that our experiences help us grow into responsible, caring, and kind adults. At first, I was going to write about forgiveness, however I do not feel the need to forgive. I feel empathy for the individual and wish them peace. This experience has taught me to be more mindful before I speak. Everyone has a story. Until you walk in the shoes of someone else think before you pass judgment.

Sticks and stones may break my bones but names will never hurt me.

I was once asked by a little girl sitting next to Meghann “What was wrong with her?” as she asked me this question she stepped away from Meghann. Meghann must of been around 7 years old and was sitting in her stroller. I believe this little girl was about the same age.

Before I answered this little girl's question I thought about it. I recall thinking about the lifetime of questions that I would have to answer about Meghann. I also knew how important my answer would be to this little girl. My answer could change the negative impact on how this innocent little girl might perceive or judge intellectually and physically challenged people. At that time in our small town Meghann was the only person with cerebral palsy. Regardless if I wanted her to be the poster child for cerebral palsy or not she had the job. I knew that there would be judgmental people who would write their own story about Meghann and her quality of life. I made my choice that day to be a part of Meghann's story and write it how I wanted. This is what I said that day to that little girl. “There is nothing wrong with Meghann. Meghann was born with cerebral palsy. You can not catch it from her. It just means that she learns at her own pace.”

You know what that little girl did? She stepped right back over to Meghann and started talking to her as if nothing was “wrong” with Meghann.

Friends Justine, Beth and Karlie

Friend Alexis

Meghann and I are blessed to have been put on this earth together. We have learned patience, acceptance, understanding, compassion and unconditional love from each other. I am sure  if I asked anyone from our small town this question.

Crystal and Meghann

“What words come to your mind when you think of Meghann?”

Some of the words that they might use would be similar to mine such as understanding and acceptance.  I hope in the last 20 years I changed at least one little girl's perception of differently abled people and maybe even an entire small Midwest town.

Feel free to share a thought or one word on how Meghann (or someone with intellectual/physically challenges) has enriched your life.

Dad, Zack, Logan, Lexi, Mom, and Meghann

Meghan and her friends Sarah, Denise and Stephanie

Meghann and her friend Diane

Meghann and Sara

What:  Online support group for parents/caregivers of special needs children and adults

          Grandparents, aunts, uncles, brothers and sisters are welcome. As long as you have a

                                      loved  one with special needs you are welcome.    

When: The first Tuesday of every month. Upcoming meeting- August 1, 2017     7 p.m.

Where: Zoom  https://zoom.us/

1. One time registration

2. Sign in using the ID number  ( 859 589 845) on laptop, Ipad, computer. Use video and audio or only audio.

3. Second option-  Call in free on your phone (646 558 8656)    

4. Join in on the conversation or choose to just listen. Your choice.

    Topic: Open meeting to get acquainted with each other.

Sign on and lend support to one another through sharing similar struggles, experiences and offering suggestions on solutions.

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