Growing Up Special

     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. 

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.

         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/ .

        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.