I'd like to introduce you to my youngest daughter, Melanie. She'll be 46 years old this year and is mentally retarded, hyperactive, has Mosaic Turner's Syndrome, a behavior disorder, a seizure disorder that she has a VNS for and a left eye prosthesis. She also has a blood disorder called ITP that is presently under control.
She moved into a group home in February of 2000 and is doing wonderfully. The staff is terrific and she seems to love being there as much as they seem to love having her! Before that, she lived at home. I take her home whenever I can, which isn't half as often as I'd like.
She started school at Flagg Street School, where she went for preschool. From there, she went to Mill Swan School. As she grew older, she needed a more specialized setting, so she entered into the Follow Me Program where she did well but as she grew, her needs grew and we had to find a new program for her. We were able to get her into the Mercy Center which was a wonderful school. She was getting harder to work with though, so we had to get someone to work with her as a one-on-one which worked out well until she turned 18 and "graduated". She attended a program that I won't mention that wasn't very well organized.
She did not do well there, so we found another program for her to attend called The Institute of Professional Practices, Inc. which she began attending in September of 2001. It was a great program and she did well there. She had a staff ratio of 2:3 which was working out wonderfully. She spent about 15 or 20 minutes in the morning doing a little socializing and then began her workday. She loved delivering newspapers once she settled into the program and her customers loved to see her coming. IPP, her work program moved to a new location and she settled right into it. When she stopped doing the newspaper deliveries she enjoyed stocking shelves and filling boxes, sorting bottles and cans for recycling or doing a little janitorial work. She loved tidying up and keeping things put away, (whether they're in the right place or not, lol). She really enjoyed her work but doesn't have a very long attention span, so things are always changing. The important part of this program though, is that their clients are always their main concern and they focus on their needs and desires the best that they can. Once a week Melanie went shopping for food for her lunches for the week. At noon every day, she helped to prepare her lunch and ate unless they decided to go out to eat. After lunch, she sometimes went swimming, after which she went back to the home base to have some soda, maybe do a craft, and wait for her transportation back home. As Melanie grew older, she outgrew the IPP program.
With so many seizures, her brain has atrophied and she has regressed in her abilities and desires. She has a 1:1 staff to always shadow her in case of falls. She's also in a wheelchair much of the time to try to eliminate her injuries during seizures. She has also grown more aggressive, has high anxiety and suffers from depression. Her seizures have worsened over the years and she has several drop seizures now. Her house staff have changed all of her bedroom furniture to solid plastic with rounded edges and she has an alarm by her bed so as soon as she gets up, her 1:1 can be right there for her. I can't stress enough how wonderful her doctors, the staff at her house and the staff at all of her programs throughout the years have been. They've all been amazing!
Before COVID, Melanie was attending a wonderful day program called Willow Tree Day Habilitation program - Justice Resource Institute. She loved it! With her inability to wear a face mask and not being able to have a 1:1 staff person, she has not been able to attend since the start of COVID. Hopefully, this will all change sooner rather than later and she'll be able to return.
Everyone who works with her, whether at her home or her workplace, works around her mood of the day, which is wonderful because you never know what it will be. If she's having a good day, she participates in community trips going places like the gym, shopping, dancing, to a restaurant, a park, etc. Since her new day program, she seems to be having many more good days which is wonderful to hear.
At her best, Melanie was on the level of a 5 - 8 year old when she was 16 but because of so many seizures, she's now on the level of a 2 - 4 year old.
Well, without further ado, I'd like to share with you some poetry that I've written about her and also some of my favorite pictures.
Here she is in her Mr. Roger's shirt...it's her favorite TV program! I wrote and told him so and he sent her this shirt!
Of course, she LOVES Christmas!
Here she is at her last school dance. She loved them! The theme was A Summer Breeze. The year was 1997. She looked beautiful!
MELANIE
A strange feeling comes over me when I'm so tied down
It's one of pride and love and joy, nary a frown
Funny how I can feel so peaceful and content
When others feel that I should resent
The love in my heart they just don't see
Don't see the peace it brings to me
A helpless soul entrusted in my care
Will always and forever be welcomed here
She brings me joy that others can't see
She loves and trusts me unconditionally
She's the ultimate challenge, a rose to me
She has her thorns but also her beauty
She doesn't know of danger or fear
Of time or sorrow or strife when it's near
She'll always be so innocent and sweet
Her impact on my heart can never be beat
Knowing I did my very best
Puts my mind and my soul to rest
Written With Love
By
Mom
"Nelanie's Mismas Tree"
Here I sit this Christmas Eve so tired and content
I picked my Melanie up today
My daughter heaven sent
How happy she was to see me when I walked in through the door
She squealed with glee and as she did
she jumped around the floor
"Mommy's here" she said and then "Nelanie's going home?"
That's how she says her name.... so cute....
Then out the door she tried to roam
"Hold on there chickadee!" I said, "You need your coat and hat
Your shoes and boots and pocketbook
We can't forget all that!"
"And how about your suitcase? Is that all set?" I said
We need your pills and glasses too!
We can't just leave, instead!"
"All set?" I asked my daughter dear so happy and excited
She squealed again and jumped for joy
"Merry Mismas bodybody!" sounding so delighted
We got outside into the van when suddenly she blurted
"Where's Nelanie's Mismas tree?" this child of mine did wonder
I quickly answered "It's at home" sensing she'd felt deserted
She had a tree at her 'other home' and thought that would be it
She thought we had to take it with us
So above our presents it could sit
Arriving home, she ran right in
Tried every light and switch
Then I plugged the tree lights in and she donned a great big grin
(Little translations: Nelanie=Melanie, Mismas=Christmas, bodybody=everybody)
©2000 Susan L. Anderson
Take Flight
Born beneath an angels wings
God sent her to me
In life and love and angels eyes
His precious gift to see
He kept her there close by His side
Angels hovered near
Very special was this child
For me to care for and hold dear
Through the years He stayed with me
To keep her free from harm
Until the day that He did see
That she had grown and should move on
Soar high above those angels wings
My child they'll guide you well
Go ever safely in your flight
Trust in Him whose house you dwell
As she flew she faltered some
Flying from her home
But guided by those angels wings
She now is soaring on her own
I know they'll always be her guide
Those angels from above
For they were sent to her from God
Born of His great love
Love Forever and Ever
Mom
Here she is enjoying my brother's pool in 1999. She loves swimming!
You can learn a little about many of Melanie's afflictions here.
This page was last updated on: April 12, 2022
All poems and pictures are the exclusive property of Susan L. Anderson. Copyright ©1997-2022
7/5/02
Here she is on July 5, 2002. We had put her apron on so I could cut her bangs and she has the phone in her hand as usual because she LOVES to talk on it. Whether it's to a real person or not, she carries on a terrific conversation. Sometimes I even have to check to make sure nobody's there! Haha!
4/18/03
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To Melanie's World
I'm very excited to have been asked to add the the following links: "A Parents' Guide to Internet Safety for Kids" and also "How to Keep Your Teenagers Safe While on Their Smartphones". With the internet and cell phones being used so much more than ever now, I think these will be very helpful to you.
Melanie joined the church on her birthday in 2013.
Making a "hangurger" for Daddy! I guess she thought he was REALLY hungry!
Christmas with Mommy, my sister, Cindy and my brother, Danny. (Daddy was taking the picture.)
My Sincere Thanks To Bonnie For
This Heartwarming Award!
Thank you Jade, for this beautiful award!
My Sincere Thanks To Sunshine Designs for this Heartwarming Award!
