What's wrong with her?

                                                             What's wrong with her?

It was a warm and sunny fall day. Meghann and I sat on my uncle’s porch step. I stared across the street to the park. I spent most of my days as a kid at this very park. The fall colors of the leaves were in full swing with shades of orange, red, and brown.There were kids playing basketball, swinging, climbing, and a couple on the tennis court. Meghann and I were accustomed to being spectators, and we didn’t mind. At this time Meghann was around 8 years old and considered nonverbal. Her ability not to carry on a conversation didn’t stop me from talking to her as if she would answer me.  I described the  scenery and activity in the park while Meghann listen quietly. We were unaware of the girl who appeared until we heard her voice.

"What’s wrong with her?" 

The little girl stared at Meghann, and slowly walked away from her as if she was contagious. As she waited for my response I assessed her age around Meghann’s.  It wasn’t the first time I was asked this question.  I had my answer well memorized as if I was giving a speech.   Of course I would tweak it depending on the age of the inquiring mind that wanted to know.

During the years I was raising Meghann, I was asked one question repeatedly. That question was always the same, and I never knew when it would occur.

What's wrong with her?

This question was asked by young children and sometimes strangers in public.  I have to admit there were times I would grow tired of the question. However I felt it was my responsibility to raise awareness and educate the community.  After all, it was in Meghann’s best interest for everyone to understand cerebral palsy. My motivation to explain was driven by the desire for people not to be afraid of my little girl. I believed I could educate, explain, and answering questions concerning Meghann openly. I hoped it would promote awareness and acceptance.

The first stroller

The more people who realized Meghann was a person first the easier it would be for her to be accepted and welcomed into her surroundings. I wanted everyone  to know she is an individual that people don’t have to be afraid of, who laughs, hurts, cries tears, tells jokes, loves, and gets mad.  As soon as people understood Meghann was more alike than different  the easier it would be for the world to accept her. Thank you to all of the people who bravely asked me the question. And for those who are too afraid, embarrassed or timid this is for you.

The beach in Florida

What’s wrong with her?

UNO Dealer

There is nothing wrong with Meghann.  You don’t need to be afraid of her, and she is not contagious.

She was diagnosed with  cerebral palsy at 11 month old. She uses wheels instead of her legs to get around. You can talk to her and joke with her. She has a great sense of humor and loves to give out hugs. She enjoys watching Wheel of fortune and doing puzzles. Communicating with her may not be typical, and that's okay. Meghann relies on sign language, gestures, and her augmentative device to communicate. Her augmentative device will do her talking for her, and she might even tell you a joke. Be patient.  Allow some time even if it makes you feel awkward with the silence. She may need a little more time to respond. You should ask Meghann questions that require a yes or no answers. It will be easier for her to engage. Be patient and you will find out what a wonderful, funny, lovable, smart and fun young lady Meghann can be. She might even kick your butt in a game of UNO or trouble.

The question over and over.

Have you ever been confronted  with well meaning people asking you repeatedly about  a challenge you are facing ?  You might become annoyed with the questions all the time. At times I felt that way with people.  I soon realized how therapeutic it had become by talking about Meghann’s cerebral palsy.   The repetitive questions and answers have educated me along with everyone around us.  Talking about Meghann’s cerebral palsy helped me accept the role of being a parent with a special needs child. It helped me recognize the role as a gift and contribution to society.  I have hated, cried, cursed, accepted, embraced, promoted, and loved my life as a parent of a special needs child. We are a one of a kind group. A group I am proud to be a part of every day. I cannot imagine my life without Meghann. She has enriched my life with patience, acceptance, tolerance, knowledge, empathy, and most importantly unconditional love.

The Special Olympics

                                                                   Reminder!!

Online Support Group for parents/caregivers of special needs children and adults

Grandparents, siblings, aunts and uncles welcome

November 7th - Tuesday  7 p.m.

Remember to join the online support group meeting this Tuesday night.  We have a great night planned.

The  first Tuesday of each month.

Stay as long as you wish.

Participate at the level that you are comfortable.

Use the app zoom

https://zoom.us/

Phone number  646-558-8656

ID number  859 589 845

November topic: Transportation and open discussion

Next meeting: December 5th at 7 p.m

Topic: Holiday challenges

Contact:

Jill for meeting ID number

jillianm1963@hotmail.com

Txt- 815-866-3776

http://parentingcelebratingsmallsteps.blogspot.com/

Follow the link below to listen to this months online support group meeting.

Topic: Sharing experiences 

Date: Nov 7, 2017 6:37 PM Central Time (US and Canada)

Meeting Recording:

https://zoom.us/recording/share/a5hG16SU72EfvIaK_NaOzoLi6-pjURtSgLeU6xONfj-wIumekTziMw

Fatherhood requires love, not DNA

Online Support Group Meeting

October 3rd at 7 p.m.

Zoom:  https://zoom.us/

Ipad, laptop- ID number 859 589 845

Or

Phone- 646-558-8656  (free)

Join parents/caregivers with common experiences, concerns, knowledge and joys with one another. Regardless how old your special needs loved one may be, there will be something for you in this group.

The next online meeting will be Nov. 7th at 7 p.m.

Any questions contact:  

Jill

815-866-3776

jillianm1963@hotmail.com

What is it like to be a step-father? What if that child has special needs? Would you choose to date or marry someone who has a child with intellectual or developmental delays?  

Blended families are the norm today. Divorce is common. Studies show that among families with special needs children the divorce rate is as high as 80%.  I was one of those statistics.

Meghann’s step-father and I married two years ago. We had been together for nine years.   I was very careful while dating not to introduce my daughter to anyone. In addition to presenting a new partner, I had the task of trying to explain this change to my daughter who has intellectual and developmental delays. A new introduction was a step I had to consider carefully before moving forward with   someone. I knew how difficult it might be to initiate new partners into children's lives.

I witnessed the obstacles that many of my friends were face with after divorce. I heard stories of fighting between children and step-parents. I listened to arguments about money, discipline, sleeping arrangements, child support, and so on.  This knowledge allowed me to be aware of the difficulty I might encounter. However I had another challenge. Meghann was diagnosed with cerebral palsy at 11 months old.  I wanted to make sure my 21 year old daughter experienced a smooth and positive transition with a new man in our lives.

How would a man who was not my daughter's biological father react to her disability?  My ex husband had a difficult time accepting Meghann and her limitations. How was a man who had no history with her going react to the challenges? Some doubts ran through my head during those days.  I had 20 years to adjust to the ups and downs of a child with special needs. I had been through strokes, therapy, rehab, serial casting, illness and more.  Would I be able to count on someone to jump in without hesitation? I needed and wanted someone who was not afraid of the special circumstances they would be walking into.   Would my high expectations of him be out of line? Would I have the right to expect anything?  Would he even understand? Would I want someone to understand? Did I even want any help parenting? I was accustomed to handling everything on my own. Would Meghann and I be able to welcome Dan with open arms? And would Dan do the same for us? I knew Dan was a loving father. I saw it every day in his daughter. Were my doubts even valid?

                               Fatherhood requires love, not DNA.

I can tell which of my friends were put on this earth to be a parent? Can you?  I think some people are natural parents. I got lucky.  I met a guy who is a natural. He is a loving, caring, loyal, fun, supportive, accepting, and a wonderful father.  The first time I introduced Meghann to Dan,  her stepfather, he talked to her as if she was a “normal” child. You may be thinking to yourself how else would he talk to her? There is a large population that has never experienced any contact with an intellectual or developmentally delayed individuals. Throughout Meghann’s life I was  thankful when people took the time to talk to her. She was always very social to everyone and loved the attention. Unfortunately there were people who talk “baby talk” to her and it drove me nuts!!

From the first day Dan met Meghann, he  spoke to her  in an age appropriate manner. I was impressed with Dan’s patience when he was communicating with Meghann considering she is nonverbal.  Dan and I talked about everything and we still do to this day. It was during these talks that Dan began to ask questions about Meghann.  The questions were not about Meghann’s disability they were about her abilities.  Dan treated Meghann as if she was his own daughter from the very beginning of our relationship. He dove right in and stole my little girls heart without even trying.  I didn’t need to worry about him understanding Meghann’s special needs. This was a father- daughter relationship in progress. He wasn’t concerned she was nonverbal, couldn’t walk, and needed extra help. It was okay with him. It is alright they don’t have a past with ups and downs. They were working on the future as a family.

For the first time in a while,  I had someone who was thrilled to take Meghann to the parks, swimming, vacations and more. Years prior  I had stopped engaging in a few activities with Meghann. As Meghann grew bigger the exhausting duty of doing it alone was too much.   

Meghann and my life began to change. We were no longer alone.  We welcomed Dan into our life and never looked back.  All of those challenges such as discipline, money, sleeping arrangements all felt insignificant once we merged our lives.  Every minute Dan and Meghann spend together is filled with laughing, teasing, playing catch, games, hugs and kisses.  Watching the two of them together put my doubts to rest for good.  Dan made his own history with Meghann when he leapt over the step and became OUR daughter’s father.

To all of the stepfathers out there who have STEPPED up to love and care for their blended families children I applaud you!!!

During the September online support group meeting Dan shared his experiences stepping into the role as a father to Meghann. Watch for the video recording of this and past meetings to be posted soon.

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.