FACEBOOK LIVE SERIES

This week I began Chapter one of my weekly FB Live series. I will be sharing details of my life with my son Jason. Jason was born in 1979 as a twin, two months premature. He developed a brain hemorrhage one week after birth which left him with spastic quadriplegic cerebral palsy. The FB Live series will continue weekly on Thursdays at 2:00 pm EST.

This weeks video is posted here. I would be ever grateful if you would share my video so that it can reach those who need to hear my story. I lived through many years of fear and frustrations of the unknown. If I can reach parents today who are caring for a special needs child, just maybe I will provide some clarity along with my years of wisdom and experience.

Hugs

Jude

MY THANKSGIVING GRATITUDE

I am thankful for friends like Garth Wheeler who has the talent to express his feelings with the most amazing gift of words. His poem is something that needs to be shared to remind us all intellectually mentally and physically challenged individuals need to be respected and not mimicked.

Hugs and have a wonderful Thanksgiving Holiday
Jude

I AM THE DISABLED ADULT
I AM THE DISABLED ADULT

Author: Garth Wheeler

I am the ADULT who cannot talk.You often pity me, I see it in your eyes.You wonder how much I am aware of — I see that as well…. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me.I see it in your eyes, I marvel at your frustration, knowing mine to be far greater, … for I cannot express myself or my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it.What I give you is so much more valuable — I give you instead opportunities.Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers.I am the ADULT who cannot talk.I am the ADULT who cannot walk.The world seems to pass me by so quickly it is scary.You see the longing in my eyes to get out of this chair, to run and play like other children.There is much you take for granted.I want the thinks on the shelf, I cant go to the bathroom, oh I need to be changed, Oh I’ve dropped my fork again.I am dependent on you in these ways.My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the ADULT who cannot walk.I am the ADULT who is mentally Challenged.I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things.I am not burdened as you are with the strife’s and conflicts of a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the ADULT who is mentally Challenged.I am the disabled ADULT.I am your teacher. If you allow me, I will teach you what is really important in life.I will give you and teach you unconditional love.I gift you with my innocent trust, my dependency upon you.I teach you about how precious this life is and about not taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.I teach you Loving And Caring Most of all I teach you hope and faith.I am the disabled ADULT………i Am the disabled ADULT who could not talk, I Am the disabled ADULT who could not walk, I Am the disabled ADULT that could not see. I am the disabled Adult who is fiscally and mentally Challenged….I AM THE DISABLED ADULT.
garth wheeler

ANGER – HOW TO ACKNOWLEDGE IT- HOW TO MANAGE IT

How completely blessed I am to have found someone who has the ability to help me find my way back after many years of uncertainty. It was during our session yesterday when she helped me acknowledge, since 2006, after my son passed away, the deep anger I have so expertly hidden from the world and myself.

I have been channeling my anger in ways that were not mentally healthy and has created a tremendous strain in my life with my husband and son. The mind is a very complicated organ that can store details of life experiences that one cannot deal with. It cannot store it forever, it overflows and spills, exhibiting physical symptoms such as anxiety disorders.

She helps me realize the source of my anger. She encourages me to open up and acknowledge them and then find a way to deal with the anger issues. This is the only way I will heal. I need to turn my anger in a positive form so I can achieve peace within my heart and soul.

I know the only way to accomplish this for me is to pay it forward. The first step I took was writing my book, Our Special Child, Jason’s Story. In the book I spilled out my soul with every word. My emotions were real and in this book was the first time I expressed my feelings of anger and quickly tucked them away again because they hurt too much.

NOTE: Our Special Child, Jason’s Story is available to purchase on my website at http://www.scrapperjudedesigns.com.

I need to express them here in order to confront them and set up a plan to deal with them. I am angry about the lack of support I received when Jason was discharged after four months in the NICU unit. I am angry that Jason was abused at a respite center treating him like he wasn’t a real person, just another “physically/”retarded”child who deserved it; and getting away with their actions. I am angry at the misguided laws in 1986 where the only choice we had to secure excellent medical care was to agree to move our child, at the age of eight, away from his family.

I don’t know what changes have been made since 1986 but I promise you I will find out. I am now an advocate and I’m starting with the state of Pennsylvania traveling to our state capital next week. I am working with the Skills of Central Pa, the organization who provided the care for my son for twenty years.

Yes I am channeling my anger in a positive way so the appropriate changes are made.

Hugs Jude

A Day at the Park

What a beautiful day to go for a ride.  The window is open just a bit for me to feel the warm sunshine on my face and the window is adjusted just right enough to control the wind from hitting me directly.  I am excited to know where we are going.  Normally I don’t care because I love adventures, they never disappoint me.  I overheard the staff talking yesterday among themselves, something about how we all are going to be excited for our day trip tomorrow.  Did I say I love adventures?

The van is slowing down, stopping at a building.  Mary, who is the designated driver for today’s trip, handed a paper to the person in the window and off we went over to the parking lot to park the van.  I wait patiently while my friends are taken one at a time over to the ramp to be lowered to the ground.  

We are all unloaded now sitting in our wheelchairs.  I wonder where we are.  I see trees, grass and many people heading towards an entrance.  I can see beyond the entrance and there are many different objects, some small, round, square and something that looks like train rails.  This object appears to be very large in places like mountains and then it drops down sharply and lands in water.  Wow….that really is interesting and I hope someone takes me to the entrance soon so I can get a better look.

Jerry is in charge of wheeling me.  He whispers in my ear and says, “just you wait Jason, I have a special surprise for you.”  He now has my full attention because Jerry is a cool cat.  He once ran with me down the hallway of my building and let me go at the top of the ramp, and off I went.  I laughed so hard I believe I wet my pants.  Unfortunately for Jerry, his supervisor wasn’t at all happy with him.  

Anyway, Jerry is now wheeling me through the gate at the entrance of the park.  I am anticipating something fun and exciting.  Now that you know Jerry, you can believe he has something special for me.

Jerry walks over to another staff member, they talk for a few minutes and he returns and off we go on our own.  I see so many people, hear lots of noises sounding like happy people, laughing joyfully and screaming in delight.  I see so many different colors and objects that I never saw before.  Jerry whispers to me again, “You are going to have so much fun.”  Okay, I am now visually excited, my arms are getting tense.   I cannot control my spasticity.   Jerry really knows how to build excitement in me.

Suddenly we are at our destination.  We stop at the place I saw from the parking lot, you know, the thing that looks like a train rail up a mountain and extends down to, what looks like, a very large pool.  

Jerry appears to be having a slightly angry discussion with the person in charge of letting people enter this ride on the rail.  I hear the person telling Jerry I cannot go on this ride.  He says I am disabled and they cannot be responsible for me .  

After a few minutes another person arrives and again Jerry is talking with him.  I hear Jerry pleading with this person that I would love this ride and he will sit right in back of me and place the strap around both of us.  He assured him I will be in safe hands and continued to say he had no right to deny me the opportunity to have fun like a normal person.  

I am thinking how proud I am that someone wants to take me on a ride that only “normal ” people go on.  I think to myself, I am normal.  Because I sit in a wheelchair doesn’t make me any different than a normal person.  I know Jerry will make sure nothing happens to me.  He knows how to keep me safe.  Why can’t I do what “normal” people do.  I have feelings and needs.

It appears Jerry won the argument and the next thing I know Jerry lifts me up and places me in this box that looks like a boat, and he slips in right behind me.  We are strapped together and Jerry holds me tight, one arm around my chest and his other arm on my head.  Off we go, slowly up a large mountain in this box that looks like a boat.  Higher and higher we climb.  I am not afraid, I trust my friend Jerry.  

We reach the top, stop for a second or so, and down we go, really fast.  The wind is hitting my face, Jerry is holding me still when I begin to stiffen with the thrill of anticipation.  Jerry is screaming in my ear and I am screeching in delight as the boat-like -box splashes in the water and we both get wet.  I don’t care!  Jerry looks at me to see my reaction and he knows I loved it and want to go on this wet ride again and again.

Taking you with me at a Flea Market

Today is Saturday and I am in my car heading for a half day selling experience at a flea market in a nearby town.  Luckily I woke up early enough to quickly munch down some breakfast and coffee for fuel for the day.  No doubt I will buy something I should not eat later on, but we won’t talk about that😉

I manage to park close enough for me to unpack my car, place everything carefully tied with bungy cords to my handy-dandy cart, and enter the building looking for my table reserved with my name.

I find my table, unload my cart and stash the cart under the table out of the way.  I spread my black table cloth and purple runner with my logo sewn on and carefully arrange my wares to look appealing and interesting for one to stop and actuallylook at what I have on my table.  One needs to have a mindset in marketing to make your table appealing to the hoards of people who walk by to hope they stop at your table.  It is a science, you know!  

I am all set, sit down on the hard seat provided, and wait.  Unfortunately, today I ran out of the house so quickly, I forgot to take my knitting.  This will be a long day for sure.

The doors open and the bargain hunters come in droves.  Sitting on my hard chair with nothing to do but say good morning, how are you today, this is my book just released; repeating myself for the next couple of hours.  At last, someone stops, looks at my book, picks it up to read the synopsis on the back cover, places it back down and congratulates me on my accomplishment.   She then looks over my other wares and compliments me on how talented I am, for which, of course, I say thank you; and off she goes to the next table.  Oh well.

The scenero repeats itself over and over again.  An hour later, after receiving several more compliments on my fiber designs, the same woman returns, picks up the book again and ask me will this make me cry.  I wonder to myself, well it depends on you I suppose.  However, I reply yes but I will guarantee you will laugh as well.  She pulls out her money and I got a sale.  All that for one book.  

Time to clean up, pack my table, pile my unsold wares on my handy-dandy cart, and off I go.  Not a totally lost day, I sold a book, received lots of compliments and shared stories about special needs children.

One might think this was a waste of time, effort and money but for me; however,  I had an opportunity to meet people, receive compliments which certainly fed my inner critic, and most importantly, spreading disability awareness just maybe changed one person’s opinion.

Note:  Craft shows are better venues than flea markets.  Flea marketers are looking for bargains only.  If I had a sign on my table saying “Everything on this table is $1.00, I would probably sell out quickly.  I attend both because I am reaching out to people, hoping to spread disability awareness and introducing my son.  You never know what connection you will make.

Virtual hugs to you my friends,

Jude

Recovering From Surgery And Using My Downtime Powerfully

To my dear WordPress friends; I underwent an endoscopic sinus surgical procedure last Thursday.  I have been forced to recuperate quietly at home since last week.  I wasn’t sure I would be able to keep myself still for so long; however, the procedure and the effects of coming out of anesthesia to this “not so young body,” is definitely keeping me intact on my somewhat old but comfy sofa with my loving dog lying beside me.

With that being said, I am feeling stronger in mind but still weak in body.  I am using my down time very effectively, however.  

I received a lovely tribute in our local paper about my book, Our Special Chiłd:  Jason’s Story.  It was well received and I am very thankful to the reporter for a well written article.  The book is available on http://www.amazon.com and http://www.barnesandnoble.com., as well as http://www.tatepublishing.com and my site at www. scrapperjudedesigns.com.  If you purchased my book, thank you.  I would be thankful if you would write a review for me on any of these sites.

I am working on organizing my first book signing in our community here in Pennsylvania next month.  My publisher sent outa ton of news feeds to media contacts within a 20 mile radius of my house and I am starting to follow up with them.  

Yesterday I read a FaceBook post in a private cerebral palsy group I am following.  I was so affected by her words, putting me in tears.  They were tears of deep anger.  She is a young mother caring for her special needs child and received a notice that she may lose her son’s SSI benefits for a reason so lame.  I pictured a beaurocratic person sitting behind a desk who has no clue of what this woman is dealing with.  He has blinders on and only sees what he interprets in laws that are full of red tape baloney.

Maybe it is unfair to blame this person since he didn’t write the law, only doing his job.    I can guarantee you the laws are written so precisely, full of words that can be interpreted in different ways.  I believe in my heart this is done on purpose in order to strategically stop the flow of money.  Our government really is not in the business to help young parents with special needs.  If our politicians are forced to pass these laws, I can guarantee you they are going to make it very difficult for the funds to be distributed.  Let’s face it, the parents of special needs children are lost in the everyday political bull shit we all read and hear in the news.

I don’t accept this.  This is why I wrote my book.  Jason and I need to make some difference.  I will do everything in my power to take one step at a time to make sure Jason’s life is honored and his legacy will live on to make a difference in helping special needs children and their families.  I will dedicate the rest of my life taking one step at a time to reach my goal.  Someone out there will hear me.  

Walk Out of Your Comfort Zone

I am relatively a very shy individual. Surprised?…yes I am as well.

As a child I was extremely self absorbed in my insecurities, lack of self esteem and very awkward with groups. I had a very supportive home life with my parents and my sister.  There was nothing in my life back then to cause me to act this way.  Because of this strange fault in my personality, my experience in grade school, middle school and especially in high school was awkward and very hard to deal with.  I had friends but never was able to keep them for long.  When I graduated high school, I wasn’t that girl who hung out with groups of friends attending dances or going to clubs.  I was lonely.  There was no one to blame but myself.  It was my awkward personality I was born with and I needed to overcome it someway.

My mother understood this fault in my personality.  Possibly I took after her and she saw herself in me.  She pushed me to join the USO back in 1968 to meet friends and learn how to interact with different people, both men and women.  I pushed myself out of my comfort zone and listened to my mother and joined the USO.

The USO was the beginning of my new life.  I met friends who are now my life long friends who I care very much for. I also met many different personalities of young men who needed my friendship.  They were away from home for the first time in their life and on their way to war.  I was someone they could talk to and provide some comfort before they went off to Vietnam.

When my twin boys were born, again I found myself having to change.  For the first time it wasn’t hard for me to step out of my comfort zone.  I was like a mother hen protecting her flock.  I would have done anything I needed to take care of my boys.  I would have jumped off a bridge if needed, to save my boys.  I set a standard as a mother who meant business and all professionals I had contact with, understood what made me tick and respected me as a mother who you did not full around with.

However, this wasn’t something I acquired immediately.  I needed to learn through mistakes, some crucial, in order to create the dynamic personality I needed in order to care for a special needs child.  For this reason, along with a few others, I wrote my book, Our Special Child:Jason’s Story.  I needed to document the trials and tribulations I went through in order to become the best advocate I needed to be for both of my boys.  I want young parents today to read my book and know they can follow my story and learn from it.  They also can be the best advocate for their special needs child as well; especially if you have the personality I had as explained above. You can overcome anything if you have the desire to.

I am still working through my shyness.  Last night I attended a social for the first time sponsored by a professional women’s organization I belong to.  There were 150 people at this social and I had to walk through the door and represent myself as a professional woman business owner and network with them.  I was apprehensive all day thinking about the event.  I was afraid to be the wall flower, standing alone and looking awkward.  I was stepping out of my comfort zone again….Yuck!  However, I put on my brave face and stepped into the “war zone”, so to speak, and I did great. Thankfully, the group and its members, are very inviting, friendly, outgoing and made me feel part of the posse with common interests and needs.  They did not allow me to be the wall flower I feared.

Note: To my readers in cyber world who were lucky enough to find my blog, let me give you a word of advise.  In order to help make yourself more comfortable with large groups, get involved.  I am the new treasurer of my group and I believe it helped me feel part of the central core as compared to being the outsider looking in.  Just a suggestion…

Have a great day friends

Virtual hugs from

Jude

Happy New Year

I would like to wish all my WordPress, Facebook, Twitter and LinkedIn friends and family a very happy 2015.

Twenty fourteen was a very busy year finalizing my book, building my art business, making new friends and reacquainting with old friends. It was an exciting year. I watched my grandchildren prosper and enjoyed my time with them enormously.

We all lost some dear friends and many well known celebrities who made us laugh, cry, and honor. I hope they all rest in peace.

My wish to all of you to look forward to 2015 with positive thoughts, achieve your goals and wake up each morning with the thought it will be a wonderful day. If you believe it, it will be.

For me, I am looking for many changes in my life in 2015. You all will get to meet my son Jason in my book which will be available early 2015. I am designing crocheted and knitted creations and can’t wait for you to see them. I am taking Life Book 2015 to continue my art training.

I am so excited to be working alongside Tate Publishers in the marketing phase of my book and cannot wait to do book signings, book discussions, book workshops and book fairs. I want to bring back the advocacy skills I learned many years ago and use them to help other young parents of special needs children.

These are all my goals for 2015. Do you have goals as well?

Virtual hugs from me to you…
Jude

A Parent’s Anguish Dealing with a Special Needs Child

I love to watch television and movies in my spare time. I am retired so I can manage my own time throughout the day. My television time is scheduled simultaneously at meals, late in the afternoon after a full day working in my studio, and in the early evening, after dinner and before I go to sleep. I enjoy knitting and crocheting while I watch television. This is my favorite time of the day, especially when my dog cuddles at my side. My family room is very warm and cozy and it makes me feel at peace.

This morning while I was enjoying my breakfast, I turned on the television and watched a show from my DVR. I tend to watch thrillers, police dramas and political satire. Today it was a police drama and I was getting into the concept of the show. Usually the show begins with a murder and then you observe the characters tend to their forensic duties to narrow down the main suspects. Today the victim was a young girl who had autism. Okay…this got my attention. The main suspect was a man with a history of child molestation. It appeared obvious he was the murderer? No, it couldn’t be, if so, there would be no real story and it was only fifteen minutes into the show. I had no idea who it was, but certainly was intrigued. Fast forward to the end….the murderer was her father.

Okay, you say, what was his motive? This is the premise of my blog post. The father was so overwhelmed with the care of his autistic child he couldn’t bear it any longer. His motive, as he related to the detectives, “she was having a fit, kicking and screaming at me. I couldn’t handle it any more and held her down with the blanket over her face to keep her from screaming out.” He continued, “I just needed her to stop screaming. I didn’t mean to kill her. It just happened.”

The tragedy of this story is the obvious lack of support to parents who are living with this every day. Yes, it is only a drama, but it is based on real, everyday life. There are many parents who are living with special needs children every day and feeling the pain this father obviously felt. The difference, I hope, they do not make the ultimate sacrifice this father did. What really hit me like a brick, were the last words the father said to the detective as they took him away in hand cuffs, “I might as well go to prison, I already was living in prison at home.” I have no sympathy for this father. You do not kill your own child because she had autism. However, being a mother of a special needs child, I can see and feel the pain this father was going through.

This is an issue many parents are dealing with. We have many very difficult issues facing us in this world today that need to be fixed. I would definitely put this one on the list, wouldn’t you?

Jude

A Smile That Can Light Up A Room

Our Special Child
Jason’s Story

“Smile”
Natalie Cole

“Smile”
Natalie Cole

A smile is the first cognitive skill Jason mastered as a baby. He quickly understood if he smiled at somebody he would receive a smile back. Therefore, Jason always smiled. Unfortunately, it is my opinion, he began to depend on his smile all the time, even when he didn’t need it. I tried to teach him other ways to express himself but he always came back with his classic smile.

He began to hide behind his smile. He would never show he was in pain, except occasionally for me. I would ask him if he is in pain, and he would give me a small pout and then smile again. He rarely expressed pain to me, only after a surgical procedure. He believed pain was part of his life.

On December 22, 2006 he found it harder and harder to hide behind his smile with his physical and mental pain. He just couldn’t do it anymore. This is when he left us to a better place where he could finally be in peace and tranquility. I now accept and understand this; it was really hard for a long time. He is now my guardian angel guiding me to help others to smile, be happy with inspirational thoughts and wisdom.

Virtual Hugs to all of you, my friends,
Jude