Growing Up Special

With a young adult special needs person, one would think that a parent had navigated most of those unchartered areas of life that come with unplanned challenges.   Not so!  In fact, once graduation takes place there are all kinds of other challenges that one did not make arrangements for that must be addressed such as living arrangements, supervision and either further educational opportunities or employment when possible.   Keeping an active social life for the young adult is important for their well-being and yours.  Don’t let their world narrow down to just the four walls of your home. 

That is a difficulty for some parents; some social situations are difficult.  Depending on the young person’s abilities the options are open to whatever decision the parents and the young person see as being a possibility.  Take advantage of every opportunity that you can to widen their circle of interaction.  You never know where that may lead regarding contacts, volunteer situations, or even eventual employment that they may find fulfilling.

In this time of financial cutbacks and downsizings, finding funding for either additional schooling when possible; or, for a place of employment to take on a person with special needs is becoming harder to find.    Employers have had to cut back on the number of employees and hiring a special needs person may not fit their needs.   For those who are in a rural setting, it is even more difficult.   There are less employment situations.  Check with your friends, your co-workers, even with members of a church or an organization that you may belong to.   Some counties have specially trained job coaches available to work with a special needs individual to find a job that fits them and their abilities.

Finding an agency or organization that is versed in this area of help is beneficial, if you can find one.    In the meantime, dealing with the young person’s expectations of instantly getting a job can be very discouraging.  Filling up the day with activities and opportunities that keep them engaged and being productive is important.

Don’t fall into the trap of allowing them to sit in front of the television, computer or computerized gaming systems just to occupy them.  Let them dream of something bigger and better, help them to achieve what is their highest level of functioning.   It may be unchartered territory…but it doesn’t mean you have to stay adrift on the ocean with no goals or plans in site.  Their quality of life is greatly improved when goals are set and met; the individual has expectations of how life should be, help them achieve their personal best.

Written by Shara Lawrence-Weiss, owner of Mommy Perks and Personal Child Stories

I really debated whether or not to write this article. I came to the conclusion that the subject matter matters enough – to put myself on the line.

I truly believe that much of the evil of the world continues because so many people do nothing. It’s not that they necessarily endorse the acts of evil but they turn a blind eye…which really leaves but one assumption: they are a part of the problem because they are not a part of the solution.

I refuse to be one of those people.

I’m only one tiny little voice. I understand that. I can’t change the world. I try and I fail. Day after day. But I continue to try and I refuse to give up.

My husband and I moved to a tiny little town just over a year ago. A few months ago I joined the town charity group. We help children and seniors – to pay their winter bills, buy coats for the needy kids, host fundraisers, etc. Tonight was our monthly meeting. We met at the home of one of our members – stunning home with an incredible hand crafted deck, cabinets and more. I arrived and looked around, in awe. I don’t have anything like this and I’m absolutely okay with that. I know what I have and it means the world to me: a soul mate for a husband and three fantastic mini humans. This thought ran through my mind…”My family means everything to me.” So much more than any beautiful home or any material thing. I am always happy for others when they have beautiful things – I feel glad for them. I smiled to myself and sat down for the meeting – with a heart full of gratitude for the people in my life that I am blessed to call FAMILY.

The woman running the meeting is a spectacular person. If the truth be told, my husband and I would both agree that she is our favorite town member of all. From the moment we moved here and met her we both said, “She is the one. She is the one with the heart – kind, caring, loving, selfless.” She gives of her time and money (what little she has) day after day – to help others who have less than her. She is poor by the world’s standards but if you showed up at her doorstep, hungry, she would feed you. She would clothe you. She would give you shelter and warmth.

At the end of the meeting she said, “Okay. Go around the table and tell us your New Year’s resolutions.”

We began to state our resolutions one by one. When it came to my turn I said, “I don’t like to say what I am going to stop. I like to say what I plan to continue. I plan to continue loving my family, caring about the environment, promoting life and doing what I can to make a difference.” The man sitting across from me said loudly, “I am pro life, too, but if the baby is sick, abort it. If it’s sick – why have it? Just abort and be done with it.”

My heart stopped beating for about 10 seconds, I think.

My son has a special need. He was born with numerous medical complications and I spent a full 2 years in and out of doctor’s offices, addressing his needs. Blood filled my veins quickly and my hands began to shake. I just starred at him for a moment and then looked away, dumbfounded.

The final person shared their resolution and the meeting came to an end. The woman in charge of the meeting (the one I mentioned earlier) began to talk with me and another woman about braces. Mine have finally come off and they were pointing that out, asking if I was happy about it, etc. This woman (the one we love so much) had gotten braces after having cleft palate surgery. She explained that this had left her mouth a little funky and wanted to know if I’d had the same experience with my braces.

I have always wondered what her story was. I knew she had a story. A deep story. A human soul does not become so caring and so loving without a story.

I looked at her with intensity and said, “You have a cleft palate? Did you have surgery?” She answered, “Yes, I did.”

I walked over to her, looked her in the eyes and asked, “How do you feel when someone says what he just said? That a baby with medical issues should be aborted? How does that make you feel?”

Her eyes welled up with tears and so did mine. She replied, “I believe I have value, Shara. I think I add value to this world. You know?”

I put my arms around her and hugged her tightly. “Yes. Of course I do.”

She went on to tell me that she had been born with a cleft palate and that she’d had Scarlet Fever at the age of 5. That’s why she is now deaf. She wears a hearing aid and has trouble talking. Her parents did not get medical help for her as a child. She had to pay for her own surgery at the age of 21.

That’s right. 21.

She was tortured and ridiculed and picked on during her entire childhood.

I told her that I was angry at this man for his ignorant statement. And do you know what she said to me?

She said, “Shara. I have learned that you can’t always judge people because of what they believe. Sometimes they simply don’t know any better. He has never had a child or a grandchild with a special need. He doesn’t get it. If my parents had aborted me…he doesn’t understand that…” Her eyes filled with tears again.

I finished her thought. I whispered, “He doesn’t understand that people like you teach people like him. That a person like you has something to teach others.”

“Exactly.” she answered. “People like him do not realize that people like me add value to the world. That I have something to teach that can benefit others. He doesn’t see it.”

She placed her hand over her heart and continued on: “God doesn’t reveal everything to us all at once. He teaches us in stages. It’s a growing process. We need to have mercy on him.”

I stood there, eyes wet with tears, in complete shock. She had just been told by someone that her life added no value to this world yet she was instructing me to be merciful to him. To the very person who saw her life as meaningless and disposable.

The words of Scripture ran through my head like a force of nature: “Father, forgive them, for they know not what they do.” (Luke 23:34) and “Love your enemies and pray for those who persecute you.” (Matthew 5:44)

I pictured Jesus walking through town, talking to people and instructing them to have mercy on one another. To love and to forgive. Putting his arms around those who didn’t understand and kindly explaining to them…another way to view things. No name calling. No hate. No disgust. Just mercy.

As I looked into her eyes tonight I saw the face of Jesus and I heard His very words being spoken through her. I could no longer hate this man or despise him on her behalf. I had no right. I decided that my best option was to share this story with others in the hopes of giving another viewpoint on those with special needs.

They do add value to our world. They do matter. It’s my prayer that some day…we will all come to see that. Some way. Some how. It’s also my prayer that we will each be more mindful of how we speak and of the words we use. Words have the power to cut and they have the power to heal.

Let’s be people who use healing words. I choose to be someone who uses healing words and I invite you to join me.

I wish to thank Shara Lawrence-Weiss for guest blogging for me on this subject.  She shared this story and I found it compelling and asked her to share it with my readers.  I want to thank the woman who exhibited the compassion and understanding of Jesus towards the man who did not understand how much that he devalues people who are born with challenges.   There but for the grace of God go any of us.  Every life has value.

Shara is an amazing woman and writer.  She is filled with compassion for those who share the planet with her.  She does many great and wonderful things, with no desire for glory for herself, but one of the best things that she does is write stories that share a  child’s personal story.   Every one of us has a  life story and we can learn from one another.   You can learn more about her wonderful work here:  http://www.personalchildstories.com/  Check her out…surely you know a child who deserves a book all about themselves!  Be blessed.

Today’s post is a guest post by Connie Baum.  She is the author of : http://thehealthyandwealthyyou.com/blog/.   Connie knows of what she speaks regarding caring for loved ones with special needs.  Please read…this comes from her heart.

Toastmasters International stresses to their membership the importance of preparing each speech.  It is important to think each project through, outline it carefully, craft it, and rehearse the presentation to perfection.

 Preparing for our beloved special needs family members is even more critical; the quality of their very lives depends upon how carefully their family members have collectively thought out plans, outlined the needs, and decided together what would be the ideal scenario for the life of that special person in the family.

 Everyone in town knew Marvin.  He was a cheery, personable fellow with special needs and he lived with his parents until his elderly father passed away.  For a decade or so Marvin told everyone he was the man of the house now and was taking care of Mother.  When Mother died unexpectedly, Marvin was left alone, morose, and with no plan in place.

 It was patently obvious Marvin had been well cared for and dearly loved.  Close family members were seriously interested to help Marvin get on with his life after mourning his loss; but, they were unable to care for Marvin in their homes on a long term basis.  When his mother was gone, he was lost and alone.  After much confusion and a flurry of activity by family members and social service workers who intervened on Marvin’s behalf, Marvin was able to find a place to live with an agency well suited to meet his physical and social needs.  They even found work for him in their sheltered workshop!  Best of all, he could take a bus to his home church every Sunday morning!  His value and worth was recognized and all his needs were being met.

Things for Marvin worked out swimmingly.  Families who plan together for every eventuality, including burial and internment, can rest assured the needs of their special family member, whose needs are unique, will be properly met.  It does take some open and frank discussion, contact with trusted attorneys and/or social workers to create a workable plan for the future for the “Marvins” of the world. 

 Implementing these plans can often be painful for family and clients alike.  It can be reminiscent of the loss of death.  It is the demise of the familiar, the comfortable.  Conversely, it is entrance into a bright new world with exciting new opportunities, fresh new relationships and networks, as well as discovery of untapped skills and talents!  There are transitions that are smooth sailing; other times the move into the new world is fraught with difficulty and adjustment comes more slowly.

 Toastmasters members plan for successful speeches; loving families plan for successful lives-particularly where the lives of precious special needs people are their prime consideration.

 Connie Baum

     I don’t know if you, the reader, are familiar with special needs kids or not; but if you are, you probably already know about the special friendship connection and support that some special individuals give to one another.  I know of a very special young lady who is doing her part to touch the lives of others with her poems, her words, and her website.   She is beautiful and caring; her name is Jackie. 

      Jackie is sharing her gifts with others here on her site: http://iamspecialneeds.com/ .   Jackie “met” a new friend named Michael on video; and, she  said to her mother…he is special like me!  I love that they accept one another for who they are.   Jackie and Michael have shared videos with one another, lending each other positive support and encouragement.   The whole world needs more people like Jackie and Michael.  

       In a world that is quick to look for negative things and point them out to each other…it is wonderful to find two individuals who have words of encouragement and love for each other.  Here is a link to Michael’s video which tells Jackie how he appreciates her new blog.   http://bit.ly/R432F

        If you would be so kind as to visit Jackie’s website and let her know how her site touches you…I know she would feel joyful to hear your comments.   Also, if you would watch Michael’s video and leave a comment I am equally sure it would make his day to hear your thoughts on his generous spirit of good will towards his new friend Jackie! 

        We need to teach everyone to love more, to criticize one another less…and we would all be our best selves now wouldn’t we?

        I read an article that says that with prenatal genetic testing, performed before the 24th week of gestation that indicates a fetus will potentially be born with Down’s Syndrome, means that 90 percent of such parents have/or will choose to abort that pregnancy.  

        This means that less children are being born with Down’s Syndrome, it is a disorder that can affect the bodily functions of the person affected, they can have thyroid disorders, mental retardation, heart defects, reflux, ear infections, sleep apnea and some obvious facial cues such as a round face with small chin, and eyes that are almond shaped with an upward slant at the outer corners, they may have shorter limbs than the average person along with poor muscle tone.  Many people are fearful that they can not handle raising a special needs child who is affected by Down’s Syndrome because of ignorance of the disorder. 

           I wonder if by doing these prenatal genetic tests, parents are unprepared for the outcome of information.  Finding out that your unborn child has a disease/disorder/illness is only the first step.  What happens after that information is presented to the parents?   This information has to be dealt with in some means or fashion.  Sometimes there are procedures that can be performed on the unborn child to improve it’s health and well being; other times there is nothing to be done.  This is when some people decide to choose abortion as opposed to raising a child with special needs.   You can learn more about this disorder here:  http://www.ndss.org/ or here: http://www.nads.org/pages_new/resources/down_orgs.html

             Abortion is a forever decision…there is no do over.   What happens when one half of the parents wants to choose life and one wants to abort?  Or one wants to risk surgery or medical intervention and the other parent disagrees?  These issues can cause unbelievable stress and frustration…not to mention spiritual unrest when faced with a life and death decision regarding their child when it goes against their religious beliefs.   Time is often the catalyst for a hasty decision.  There were examples in the news story that talked about women/couples that made the decision for abortion…only to have future interaction with an individual with Down’s Syndrome, only to say later that if they knew more about the condition maybe they would not have chosen abortion. 

          Every life has value…fear is such a strong emotion that I think it can cause people to make a decision about abortion that they may live to regret.  If a person or couple truly feels that they are ill equipped to raise a child with Down’s Syndrom than I personally believe they should bring the child into the world and allow it to be adopted.   There is no shortage of people who wish to adopt and to parent a child…many people feel a calling to parent special needs children.   There are some people who consider the child born with Down’s Syndrome to be a “gift”; or to be endowed with an extra-ordinary ability to love unconditionally.   We should all be born with such a condition which causes us to love unconditionally!

         A huge area of concern for parents around the globe is  reports declaring that Autism diagnosis numbers are on the rise…some in fact, are saying that the numbers are doubling.  I read a recent article here: http://bit.ly/I5rII  .  This increase in numbers is frightening for those who are of childbearing years.  Baby boys are four times more likely to be diagnosed as being autistic as baby girls are; is that for real?   What is causing our children to be born with this condition?  Is it the environment, diets, or genetic disposition?  Is this an epidemic, or are our fears and faulty diagnoses at the core of the problem? 

         Frankly, if your child is one who is affected by an Autism diagnosis or label…it really doesn’t matter.  The fact is that your child is facing some serious issues both socially, emotionally, and physically.  What is desperately needed is some answers; and the only way to get those answers is through research.  Funding is a big part of the research solution.  Learn more about Autism and it’s research issues here:  http://www.autism.com/ .  If we all work together…we can improve the lives of families around the world who struggle with the effects of Autism.

 Today I did an interview with Louise Sattler who is the creative owner/operator of  http://www.signingfamilies.com.   Louise is an expert trainer at workshops and classes that teach American Sign Language to help people communicate with one another.  She is also a certified school psychologist who has an awareness of the importance of the need for families and community leaders to learn sign language.   Sign Language opens doors and bridges gaps for people who are hearing impaired, or who may have developmental delays or special needs.  Communication is something that many people take for granted.

         Put yourself in the position of a person who is hearing impaired, or a person who lives with special needs; and, consider some environments they they may experience differently than you; such as a trip to the hospital or emergency room.  How different would the experience be for you if you were the one who had difficulty making your needs known to the health care professionals.  Or say you are an elderly person who is experiencing hearing loss…how are you going to communicate with other residents or say the staff?   How about shopping or getting educational services at college or in elementary school?   How about ordering a meal in a restaurant?   Do you see how the quality of life can be improved for people impacted in this way?   Can you see how sign language could open doors for people if others in the community took the opportunity to learn it from someone like Louise or through her DVD’s?

Click on Image to listen to Interview

        If you are interested in learning more about Louise and her educational services please listen to the interview here:  http://www.rapidcashmarketing.com/lorrainesinterview/signingfamilies.htm

I’ve had the recent pleasure of “meeting” an extra-ordinary person with a calling on her life to teach communication skills through sign language to families.  Louise Sattler is a very interesting person who has had a variety of experiences in different settings, including the educational field where she was a licensed school psychologist, which has enabled her to work with children and their families to develop strong and effective communication skills.

I met Louise through an online contest, believe it or not.  It was run on Twitter.  I happen to have won a poetry contest; and the prize, that I chose, was a DVD that made by Louise Sattler.   Louise has a site called:  http://www.signingfamilies.com/ . There you will find all kinds of information about Louise and what she does; but, I didn’t know all of that, when I won the DVD.

I chose that DVD because of the title and what I could potentially use it for.  The title is, “Baby, Toddler, and Preschool Sign Language”.   I work with children in several capacities and I liked the idea of learning some sign language just in case I needed to know it in the future.  I was so excited when i got the DVD because, just watching it I could see the passion and the commitment that Louise had for teaching sign language to children and their families.

Bravery came over me and I approached Louise about doing an interview with me so that I could blog about what she does through her workshops, her speaking engagements and through her DVD’s.   Louise agreed to do that and I thought that I would share the news of what she does because it helps so many people.  By teaching sign language as a way of communicating it allows families to be more effective in advocating for their special needs loved ones.

http://www.signingfamilies.com/ caters to those who live and work with individuals with special education needs.  Signing isn’t just for the deaf communities…people who struggle with many issues of disability can benefit from communicating through sign language.   So if you work in education, in health- care, daycare, foster care, adoption, or you have a business or a family member who is impacted…this is a great way to brush up your communication skills so that you can strengthen your ability to communicate effectively in your relationships.

If you would like to contact Louise Sattler about her programs & her work she can be reached at Louise@SigningFamilies.com; or, you can contact her to do a workshop, give an interview or a presentation by calling her business line at:               410-715-9647       .    Louise is also on Twitter: http://twitter.com/Louiseasl . She is very down to earth and she also teaches in Spanish-she is bi-lingual.  Ask her about her programs….tell her that Writewhereyouare sent you and you will get a discount.    You can purchase her DVD’s at her site:  http://www.SigningFamilies.com/  or here on Amazon. com: http://bit.ly/913i5/. 

Ps.

  You can always stop by and see me also at:  http://www.writewhereyouareblog.com/ .

Guy began to leave his bed for longer periods of time.  His appetite improved.  He became strong enough to participate in a sheltered workshop program.  Then he went to his workshop eagerly and more often.

The most amazing wonder of all was that after ten years, Guy Foster LEFT the nursing home to live in a Group Home setting, where he earns spending money from his job in a recycling center.  He has a network of people with whom he exchanges letters and jokes; he has a standing invitation to drum with a group of Indian friends. He even enjoys regular visitors to his apartment and phone chats.  He is proudly learning normal life skills.

At this writing, Guy Foster is 42 years young and full of vim, vinegar and vitality.  He encourages others every day with his greeting cards, his empathy and his love.  He also believes the world’s entire population should be drinking “his kind” of water!

What I would like to impart to anyone whose eyes have fallen on this page is this: Feed every family member organic whole foods when you can; pure, filtered water and lots of it.  Get adequate amounts of sleep and rest and balance that with movement, exercise.  Supplement everyone’s diets with whole foods supplements and add in green super foods and highly mineralized juices.  Not just fruit juices, but the supplemental juice products used by the ounce.  Use as much fresh, raw food as you possibly can because we all need the phytonutrients, anti-oxidants, enzymes and vitamin/mineral content that is so plentiful in fresh foods.  I’d also encourage anyone to boldly immerse yourselves in the study of body work-Reiki, Ortho-bionomy, massage therapy- whatever strikes your fancy.  Investigate the wonders of energy medicine.  Learn all you can about herbs, homeopathic remedies, Macrobiotic foods, Ayurvedic methods, and whatever else resonates with you.  Find a good chiropractor who understands that the body heals from the inside, not the other way around.  Any health practitioner worth his salt will teach you a variety of complementary ways of working with bodies that may not be “perfect” according to someone’s standard.  One more thing:  Make the kinds of memories that cause you to laugh so hard your face and belly hurt!

Families who avoid artificial sweeteners, MSG, soda pop, processed, packaged and micro waved food products as well as fluoride-laden dental products will notice a huge improvement in the quality of their lives.  These changes will be remarkable where issues are noted involving the nervous system, digestion, and elimination.

As soon as the physical body gets its needs met, the mental needs fall into line, along with the emotional and spiritual.  When those requirements are satisfied, fewer behavior issues are problematic, sleep is more refreshing, cheer is the order of the day and peace can reign in the busiest household!

Connie Baum

http://motherconniesez.blogspot.com

      Thank you Connie for sharing with us the experiences that you have had and the knowledge that you dont have to accept life as status quo…you can seek therapies that enrich the lives of our special needs loved ones.