Growing Up Special

      I recently had the pleasure of witnessing the power of seeing special needs students who were trained at doing a job and felts a sense of empowerment with their purpose.  It was a simple program that is funded by donations from their customers or clients.   The group of Autistic students  get “hired” to go to homes and businesses and steam clean carpets.

       This local program is in danger of being phased out.  A new person took over and therefore did not have all of the contacts that the previous person had.  However, in the last couple of weeks of this summer’s program things picked up.  The students get booked by an organizer and they go to local businesses or homes at an appointed time and they steam clean.  They were excited when they arrived and they were diligent in doing their jobs.  There was a team of 2-3 students and a couple of adult supervisors.  This worked out wonderfully.  Was the carpet cleaning equal to a professional cleaning?  No, however they didn’t charge a professional price either.  I felt that the service they performed was worthy of being a paid job.  They used regular upright steam cleaners that anyone could buy and cleaning solution that you could buy in a box store; but in general the results were clean and fresh.

         It was awesome to see pride on their faces when thanked for performing the carpet cleaning service.  They had a passion for doing their “job” right.  They appeared to feel happy to have a purpose.  In fact, the teacher told me that she was concerned about how they would feel for the rest of the summer when they didn’t have a job to get up for; she said there were some students who would get filled with anxiety when there were no “jobs”.

         I would love to see more programs developed for special needs individuals…both those who are in school and those who are older.  Everyone has abilities, skills and knowledge…why not harness the best opportunities that will enrich the lives of a special needs person?   Do you know of any programs that exist in cities or rural areas that build up the life of a person who was born with challenges?  Tell us about it please.

     When you are raising special needs children you know how painful it can be for your child to be excluded from other children and their activities.  Sometimes your child’s challenges prohibit them from sharing an activity or experience that other children around them enjoy…but other times, it is either through prejudice or mis-information…or, a lack of understanding.  No matter the reason, being excluded is not fun and can actually be harmful to your child’s self-esteem and their ability to form positive social interative relationships.   Therefore, teaching how to accept and include others is a huge life lesson for families, schools, churches, organizations and agencies.

       That is why i love the book called, The Friendship Puzzle.  The children’s book is all about helping children to learn about the importance of accepting and including kids who are living with autism.   It talks about differences and how friendships are formed once we understand each other.  We have to learn to look beyond the surface of who a person appears to be different from ourselves; to see the real them.  Then, we must find ways to include each other in our daily lives for a chance to become friends.    Sometimes it is easy to misunderstand another person’s actions when we don’t understand why they do or say certain things; or, behave in a different way. 

       The Friendship Puzzle was written by Julie L. Coe and illustrated by Sondra l. Brassel.  The book was inspired by Jennifer Maloni  who’s children Dominic and Dylan are living with autism.  The boys experienced a similar real life experience that was sad and disappointing.  That experience is used in this book to make a difference in how we view people with disabilities.   You can learn more about the book and where to purchase it here:  http://www.friendshippuzzle.com/  This is not an affiliate link… it is just a book that I happen to adore. 

        That message, of accepting and including one another, is very profound.  We can all apply that message in multiple ways to better the relationships we have with others without regard to abilities or disabilities; it is something that we can all improve on.  This book and a recent news piece on an amusement park for those who are disabled reminded me of how often people neglect to include those who are different from ourselves in the things we enjoy; simply out of ignorance of how to do it.

        The amusement park I read about is called Morgans Wonderland and it is in San Antonio, Texas.  It was built by a father after a failed attempt by his daughter Morgan to interact in play with other children due to her disabilities and the lack of clear communication between the children alongside of a pool.  The other children were playing with a beach ball and she wanted to play too…but lack of communication and understanding prevented continued play.  This kind of situation can be heartbreaking…but in this case it was the catalyst he needed to dream of a place where special needs people and their families and caregivers could come and be included in all of the activities. 

        Gordon Hartman was the father and he has achieved his dream.  Morgans Wonderland is a 25 acre park that lets the special need individual be themselves and experience the joy of an amusement park just like anyone else.  They utilize volunteers at their park and they encourage families to come and enjoy their time together.  I love the idea behind this park.   If you are interested in learning more about Morgan’s Wonderland and all it has to offer…please click here: http://www.morganswonderland.com/morgans-wonderland-tell-us-about-inclusion.asp  Again, this is not an affiliate link…it is just a place where a family can go to relax and have a positive family experience with their special needs loved one. 

        I just want to thank the Gordon Hartman’s and the Julie Coe’s of this world who realize the importance of acceptance and inclusion. 

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 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/ .

        There is a disturbing story today regarding a young disabled man, with multiple disabilities, who was recruited into the Marine Corps for service.  I have to preface this story by saying that I love the Marine Corps.  I have many friends and family who have served and I am proud of them and the Marine Corps.  However, this story is disturbing because of the potential consequences for anyone unfortunate enough to be in this situation. 

        Our local school told us at the IEP’s this year, that with changes in special education requirements(sound like national or federal changes)…that students in the special education program are now being encouraged to pursue a certificate of completion, as opposed to a diploma, when a special education student nears the end of their high school career.  The reason being that for many of the students, the classes that they have already taken are not going to count towards graduation requirements.  Therefore, they will end up going to school longer.  For some students, it will mean that instead of 4 years of high school…they could end up attending classes in high school for up to six years.

        I think this is very unfair.  From what we have been able to understand so far, for those who insist upon a diploma as opposed to a certificate of completion…it will be almost impossible to attain.  In our school here in Michigan, the special education students will be blended into some regular education classes; and, then they will have what they are calling a workshop, which is supposed to be more like a 30 minute homestudy class, where they are supposed to get more help with problem classwork.  The issue is that many of those workshop teachers will be regular education teachers who are not trained to work with the special education students who require more help and in some cases specialized teaching techniques–something that will require more than 30 minutes time from a teacher who has to divide up those 30 minutes with a classroom of students who need help.

        This feels like a social experiment that is going to go horribly wrong.  I am frustrated because I have a child who is going to be caught up in the middle of these changes.  I have a son who also is a special education student who graduated in the last few weeks…he was able to get a diploma.  This is no small feat.  In this day and age of financial uncertainty, anything you can do to improve your employability is important…having a diploma is better for getting a job than a certificate of completion when it comes to getting hired.

        I was told by an administrative person that employers and schools of higher education are aware of these changes and are cooperating with these changes by honoring certificates of completion when it comes to going off to college or for getting jobs.  I do not believe this is true.  I firmly believe that most employers are unaware of these graduation requirement changes and will view a certificate of completion as being “less qualifying” for a job than a diploma. 

         First off, at this point…even many teachers and administrators are still trying to figure out exactly what all of these changes will mean for both staff and students.  Many parents of special education students are not understanding how these changes will impact their families.  It is the students who were already in high school and have completed a year or two or three towards graduation that are going to fall between the cracks.  I am already being told of students who were Juniors this year, who have discovered that this impacts when they will “graduate” and are dropping out of school because they do not wish to go to school for an additional year, or two longer, than they had expected.  When they also discover that many of them will not be able to get a diploma after all of their hard work….and will get something that appears to be less than a regular education student gets; I believe that even more students will drop out of school.

       This is devastating; special education students are already at a disadvantage in many areas socially and in the job market.  This is just one more (large) obstacle to having some level of independence and success.  There needs to be a public outcry at the injustice of it all…on a local level and on a larger scale.  Do you have any knowledge or experience with these changes?

      I was disturbed this past week by a news report of a special needs student who was left on his special needs bus.  The bus aide allegedly knew, according to news reports, that the student had fallen asleep on the bus but allegedly didn’t notify the bus driver.  It was reported that the aide was late for church or some appointment and didn’t take measures to ensure that the student was delivered to his destination.  That student was left on a freezing cold bus for over 19 hours without relatives knowing where he was.  If those accusations are proven to be true…it is unacceptable…both morally and legally.

        The student ended up being hospitalized because of the temperatures that he was exposed to while on that bus overnight on New Year’s Eve.  The family of this student was both horrified and outraged.  The student is on the mend…but, there may be residual fear that that student has to struggle with.

       In those kinds of situations…the disabled are at the mercy of the person who is responsible for their care in those moments.  The thing is…as a parent…you really have to rely on the personal responsibility and the integrity of the caregiver’s value system.  Will they care for your loved one in a safe and caring way, as you yourself would?  How do you ensure that your loved one is properly taken care of in your absence?

        When you leave your special person in the care of others you have to be convinced of that individual’s competancy.  When that caregiver fails to protect or neglects to provide safe and appropriate care…who is responsible?  Is it the individual…the agency, school, or system that they work for?  It is accountability that helps to prevent devastating situations from taking place.

        I think a big part of the equasion is that you develop a close and personal relationship with the care provider.  You try to make sure that there are checks and balances set up to hold people accountable.  The bus situation could be avoided if there is a system that does a final check of each bus seat before the aids/drivers leave the bus at the end of a shift.  Alot of school systems have a check list…the bus drivers and aides must complete a walk thru of the bus before finally putting a sign on the bus window or door that verifys that the bus is free of any riders when the aides/drivers leave that bus. 

       This was a horrible story; but, it is also an experience to learn from.  Any real life situations that you could share that would help another family?

        When you first become a parent you think that love will conquer all things that get in your way while you parent your child.  However, there are somethings that can’t be conquered.  You can’t undiagnose a child who has been labeled special needs; and you can’t be the biological parent of a child that you didn’t give birth to.   As a parent, your greatest tool is love…but love isn’t enough to make bad situations go away.

          However, you can find ways to improve aspects of the quality of your children’s lives; and yours, as the parent of a special needs child or the parent of an adopted child. No matter what the situation, or what the diagnosis is…it doesn’t change the fact that you love your child.

       Disppointment is a real life shadow when experiencing obstacles raising children with challenges.  It can’t be avoided.  But love isn’t enough to change limitations imposed by a specific diagnosis…but, love is enough to find ways to still enable as much independence as possible.  When love isn’t enough to fill up the empty spots left by the void of a biological parent in their lives…it is enough to show compassion and empathy to help them understand that the empty spots don’t have to lead to destructive behaviors. 

         The truth be told; special needs children and adopted children need a strong advocate in life, in school, and in medical settings.   No one knows your child better than you, the parent, and no one will fight harder for them; to get the things that they need, when they need it.  Parents are on the front lines of battle for their child. 

         When love isn’t enough to magically make everything perfect and ok…it is enough to give you the courage and strength to face the challenges before you and your child; and to find ways to be successful and achieve the milestones in life, that you know your child will benefit from.  Love is enough to provide acceptance and encouragement to be growing as a person to be the best person that they can be.