Growing Up Special

Parents of Special Needs and Adopted Children Seeking Excellence

Posts Tagged ‘disabilities’

Apr
14

Include Me Please

By Rainy on April 14th, 2010

Tags: , , , , , , , , , , , , , , , , ,

     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. 

Aug
18

Special Needs Families: Are You On A Trip To Holland?

By Rainy on August 18th, 2009

Tags: , , , , , , , , , , , , , ,

                                                           Are you on a “trip to Holland”?

         The poem written by Emily Perl Kingsley was cut out and pasted on refrigerator from February of 1992 until we moved to a new home in 1995.  It was titled, “ Welcome to Holland”.  In essence, it was a snapshot of what it is like to being unprepared when you give birth to a child who has challenges, such as medical or cognitive disabilities.

         There is one section of the poem that I read over and over again, “After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”     “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”   But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.”

My husband and I wanted to go to Italy and ended up in Holland on February 7, 1992.  I should have known that our trip to second time parenthood would be bumpy as we were told that our second born was to be a girl.   “Two girls, so nice”, my OB-GYN told me.  Guess what, we had the first boy born in 28 years in my family when he arrived via emergency c-section.  Not breathing right.  Sugar too low, heartbeat too high.  I could already feel the “plane veer” off course.

       Days later we were allowed to go home only to notice that our little “fella” was turning the color of a Sunkist orange.  Not good.  Not good at all.  Rushed back to the hospital to be told it was simple “jaundice”.  Nope, nothing in the child’s life would be simple, I found out. Days go on and before the first actual tulip bloomed that year we were in intensive care with our young guy.  Jaundice ended up to be a “liver problem” – not yet determined, but possibly very serious and could lead to severe retardation.  Respiratory syncytial virus/ RSV nearly claimed his life.  Reflux choked him every third breath.  Our nightmare continued.  You know you have a very sick baby when you can’t find room in the isolated PICU suite because of the number of doctors, nurses and respiratory therapists working with your child to keep him alive.  You also know your baby is very ill when the nurses come and ask you questions such as, ‘Is there anyone we can call for you?”  Does God have a hotline, I wonder? 

      For any new parent who has a baby you know this is the worst part of the scenario- waiting.   You wait to see if the tests are positive for illnesses that are unimaginable.  You wait to see if the insurance will cover the rare and complicated blood work, machines that are helping your child stay alive or special therapy sessions ordered.  You wait to see if you will ever have a “normal” life again for yourself, your family, your work, etc.  Will your child walk, talk, eat normally, have friends, etc.? You begin truly begin to hate Holland. 

      Then, little by little, the wait can end.  Test results come back.   Therapies begin.  Hospitalizations end and you go home.  But, for many of us, this is when you start a new journey in to the realm of Special Education.  Here is the most ironic part of this story and the reason I am writing it for this blog.  I am a special educator.  I am a full fledge, certified School Psychologist that is trained with helping parents and children with special needs.  All my training flies out the window as my mind is trying to process the months of evaluations, reports and recommendations from specialists.   Ironic indeed.  I have now changed teams!  Instead of being the intervention specialist I now am the one calling our local school district asking for help from the Early Intervention Team!   And I am so grateful when they appear at my door. But, I still have problems with paperwork and understanding all the information.  How can this be?  I do this job everyday and I am still wading through it because my head is so full of grief and confusion.  The team helps me. Everyday gets a little better. Clarity arrives with every meeting or visit from a team member. Family members come on board to help.  We get it griethrough it. 

     Now fast- forward, our son improves with therapy as he starts to talk, walk (actually run) and become quite sociable.  He has more hospital visits but he is deemed fairly healthy.  His liver has a benign disorder and we are told that he shouldn’t go without food or enter in to the military.  We can live with those two stipulations to have a benign liver disorder vs. the alternatives.

 I also become a much better psychologist.  Often I go to our refrigerator and I read Welcome to Holland.  As I do, I imagine my own fears, but also the see the faces and hear the sad, confused and sometimes hopeful voices of countless parents and children I have worked with in the past. I am a better person because I stopped in Holland than Italy.

    As for the little “fella”, he is applying to colleges now. He has had his challenges, but nothing we couldn’t handle without the help of school and healthcare professionals.

     And guess where he suggested we go on summer vacation this year?  Holland.  Well, I’ll be!

Hello Readers:  I would like to take this opportunity to thank Louise Sattler.  Louise is an expert in working with children…as she said…she is a certified School Psychologist.  She also heads up a great business known as Signing Families.  She has a website that you can access here:  http://www.signingfamilies.com.  Louise is available to do workshops and she does speaking engagements as well.  Teaching sign language helps build relationships and opens doors of communication for those with special needs.  Louise and Signing Families has a wonderful DVD which teaches beginning sign language for babies, toddlers and pre-school age children; it has over 100 signs to use. 

      I can say that she is a very engaging woman who is open and willing to share her expertise and her experiences when it comes to educating and helping families succeed in opening doors of communication for their special loved ones.  Thank you Louise for sharing your personal perspective of living successfully with challenges in parenting children with special needs!

Aug
01

Sign Language To Communicate And Strengthen Relationships

By Rainy on August 1st, 2009

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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/ .

Jul
18

Recruiting People With Multiple Disabilities For The Military

By Rainy on July 18th, 2009

Tags: , , , , , , , , , , , ,

          The young man’s name is Joshua Fry and he has been diagnosed as Autistic.  He was living in a group home at the time of his enlistment; in fact, it is alleged that a Marine recruiter picked him up from the home and took him to the recruitment center to enlist.  The background of the story, as I understand it, is that this young man was born to parents who allegedly abused drugs.  He was diagnosed as being Autistic, as a young child.   Joshua was allegedly abused as a child and he had learning disabilities.   He struggled in school and had allegedly developed a relationship with a military recruiter.  Joshua got himself into trouble allegedly for stealing and having a weapon; and, he was sent away to a treatment facility for counseling. 

           In the meantime, Joshua’s grandmother had custody of him and allegedly told the Marine recruiter to take Joshua’s name off of the call list as he was “not Marine material”.   It would have been easy enough to check that out by following up with the school administrators.  Those words should have been the end of any active pursuit of Joshua, as a person to be considered as a Marine recruit.

        For a recruiter to continue to persue an individual like Joshua; it should be considered a crime.  Many special needs people would love to be in the military; however, the nature of the job requires quick thinking, reliable decision making every time, the ability to use good judgement, and, to exhibit character traits that would be of an elevated level compared to the average individual.   Some individuals able-bodied or not, no matter how how they try, are not going to be able to perform at those levels and meet those responsibilities.  It is important that those in the military be able to do so because lives depend on it!

            For many people with multiple special needs…being able to make fast, quality decisions regarding the safety and well-being of themselves, as well as others, is difficult; even under normal circumstances, but if you add into the mix, the stress and chaos of a war situation, it could be a dangerous combination.  It is heartbreaking to have someone want to serve who just may not be qualified to do so because of a physical, emotional, or developmental disability.   But encouraging that same individual to go ahead and sign up should be criminal…it is not in the best interest of that individual, the military personel who work alongside of them, or the families who love and support them, to the best of their abilities.

         It is being alleged that when Joshua got out of the facility and entered the group home; he had re-established a relationship  with the recruiter.  If it is true that the grandmother had spoken to those at the recruiting station and told them of the problems with Joshua…that should have been the end of any attempts to recruit him.   If that recruiter had the knowledge of the problems that Joshua struggled with; he should not have allowed Joshua to sign up. 

            Joshua’s grandmother had the courts approval to be his legal conservator.  Basically, meaning that he was not able to sign most legal documents because he wasn’t able to completely understand the legal consequences in doing so.   He had a low IQ, he was diagnosed as Autistic, bi-polar, asthmatic, he had learning disabilities and he had also been treated in an in-patient environment.  For all of those reasons and more…he should never have been a candidate for service in the Marine Corps. 

         Once he got to boot camp, he found himself in over his head.  He got in trouble for stealing food, for disrespecting authority, and, he was not following orders.  He told those in positions of authority that he didn’t want to be a Marine and told them of his history.  They agreed he shouldn’t be there after talking to his grandmother; but, instead of sending him home he was allowed to graduate boot camp.  Months later, he was found to have pornographic photos on his cell phone…disciplined and instructed to not do it again.   He failed and again was found to be in possession…this time with child pornography.    What he did is wrong definately, does he understand that?  That is the question…does he know what he did is wrong; and, is he capable of understanding that his actions have legal consequences?

           He was arrested and is being held on a variety of charges that he probably does not understand and is incapable of avoiding committing over and over again in the same military environment that he should never have been allowed to enter in the first place.   For heaven’s sake, this is an individual that was living in a supervised setting because of issues relating to the impulsive behaviors associated with his disabilities that didn’t allow him to live independently.  How in the world is he expected to fulfill his commitment to the military?  What will happen to Joshua and others like him?  What kind of legal discipline will he be forced to accept?  Will he be dismissed from service and returned to a supervised group home setting or will he be in the prison system?  

          While some disabilities allow individuals to perform many tasks related to military life…there is no guarantee that those are the only situations in which they will be needed to perform in.  We have to be very careful about making decisions regarding allowing those with disabilities into the military.  Their very lives could depend on it. 

           Recruiters are expected to persuade prospects to sign on the dotted line and become a member of our military service.  However, people with documented low IQ’s, learning disabilities or medical or emotional issues that would prevent them from performing their duties in a safe and timely manner should not be “encouraged to join up”.  This feels a little like it is taking advantage of someone’s lack of understanding.  It is an unfair advantage to have knowledge that they could be put into situations that are not within their capabilities of handling appropriately; and, still encourage them to join the service.

          We are in a time of war, men and women are needed to serve.  However, it is wrong to recruit people who are at a disadvantage intellectually, physically or emotionally.  This issue is going to become more of a problem because of some changes being made to the educational requirements across our nation.  Many special education students are caught between a rock and a hard place with the raising of educational requirements to graduate.  Many of them will no longer be allowed to get a diploma…they will be getting a certificate of completion instead.  Some of them will have to go to high school for 5-6 years, as the additional requirements are phased in.  This is already resulting in many students either dropping out of high school or choosing to get a GED.   Many more will try to seek a position with the military because of the lack of jobs available for special needs persons.  Just because someone is disabled or has special needs doesn’t mean that they are not patriotic; it doesn’t mean that they don’t want the respect that being in the military can give them.  Many would love an opportunity to be a hero for their country by serving.  This makes them vulnerable to outside influences when it comes to signing up.

         It is important that the Marine Corps does what is right in this situation for Joshua and others like him.   He was out of his element here; and, it should have been stopped by those in a position to do so before he ever signed on the dotted line and spent one day in boot camp.   Many eyes will be watching.  Parents, agencies, friends and educators…please be aware that your special needs students are vulnerable to the desire to serve their country.  It is admirable, but they are also vulnerable to recruiters who need to put people into the service and are more than willing to talk to your students in a way that makes them even more determined to serve; whether they are fully capable of doing the job safely, or not.

       What are your thoughts on these issues?

Jul
06

Moving Can Be Moving

By Rainy on July 6th, 2009

Tags: , , , , , , , , , , , , ,

“Moving Day Can Be Moving”

 

Jarry and Andy, two guys who went to Special Education classes, found their way into the Mid Nebraska Individual Services program as soon as they left school. Both fellows lived at home with their parents but when they left the classroom they qualified for workshop and housing benefits.  The two were already well acquainted from their school days and were close to the same age, so they made good housemates.  Staff looked after them during the hours they were not involved in sheltered workshop activities, ensuring all their needs were met and they were well cared for, living in a comfortable home on a lovely tree lined street.

Jarry managed to find work in a warehouse and if it had not been for a health condition, he may have been gainfully employed like any other high school graduate.

Andy, on the other hand, exhibited some behavioral issues that precluded private employment.  Instead, he shone in the workshop by folding mechanics’ towels, counting the bundles and stacking them. 

Both boys matured and learned life skills as their abilities allowed. 

It was shocking for them and their families to learn that the owner of the house they rented was going to move back and wanted her house for her own living arrangements.  It did not take long, though, before arrangements were made for the guys to live in a newly erected apartment building and they acquired a third housemate, Ron, who shared expenses in the new place.

Moving was exciting for the boys then because each would have shiny new living quarters, the same familiar staff, and new furniture!  The parents heaved and hauled all the boys’ belongings to the new digs and helped them get settled.

 

Change

Change is very difficult for anyone.  For people with disabilities it can be traumatic.  Ron worries that he will never see his Elvis posters and that he might get lost, Andy is sure he will never be able to find his miniature windmills and obsesses about where the calendar will hang.  Jarry just wants to know all about the closets and make certain he’ll have enough room for his Nebraska Cornhusker collection. Change requires a great deal of reassurance and routine!

 

More Change

More than a decade has passed since that major event.  The apartment complex no longer allows patio grills, Andy cannot play his drums without disturbing the neighbors, and the management is not willing to make needed repairs to their apartment.  It has been decided that more suitable living arrangements can be made by moving the fellows into a six-plex  complex near the downtown area.  All their needs will be accommodated beautifully in comfortable, affordable surroundings.  They will retain their loving staff, the Elvis posters, the windmills and calendars.  And Jarry’s room has enough storage for his growing collection of ‘Go Big Red!’ items!

But the very best feature of all?  Moms and Dads won’t have to do the heavy lifting this time.  Professional movers have been called!

Emotional Factors

Fear of loss figures into any move for anyone.  As a move takes place, we risk losing the familiarity of our routine, the comfort of known surroundings.  We may have difficulty remembering where the light switches are placed!  We may be concerned that we can find our belongings when we arrive at the new location.  This houseful of guys is no different in that respect; their fears may just be amplified and they will no doubt need large doses of reassurance and routine until the new place becomes old hat.  They are most fortunate, as are the families, to know that Staff has everything under control and all will be well.

 

Moving may be a moving experience but it can also be a great adventure!  Andy, Jarry and Ron will eagerly and cheerfully share their photo books to prove that point!

Connie Baum-guest blogger

http://www.Twitter.com/motherconnie
http://www.foodstampscookingclub.com
http://foodstampscookingclub.com/blog
http://motherconniesez.blogspot.com
http://thehealthyandwealthyyou.com/blog

Sep
02

Is There A Need For Support For Families Of Adopted And Or Special Needs Children?

By Rainy on September 2nd, 2008

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

        My husband and I are the proud parents of six adopted children.  We have 3 girls and 3 boys.  Each person has their own gifts and blessings.   Some of those children are special needs children; and some are not.  We have children with special needs issues ranging from bi-polarism, to ADHD, to learning disabilities, to fetal alcohol spectrum disorders, some have behavior related issues.  One is homeschooled, one is in special education classes, one should have been, and some have benefitted from regular educational services. Some are adults living their own lives very successfully.  Others struggle in some areas of  day- to- day activities.  A couple have to be supervised or encouraged every waking moment of the day to help keep them focussed on being the best person that they can be.  :)    They are all loved, supported and have brought much to our family. 

        Each person has their abilities and their challenges.  None of them did anything to deserve the life they were born into; they had no control over the very beginning of their life.  Yet, each of them must strive to have a loving, healthy, productive and happy life.  It is possible.  Some adaptations may be required for some of my children to have an independent life; but, it is possible.   Since it IS possible, we will do whatever we can do to help make that happen.

          Adoption is a complex thing.  It serves many purposes and yet…it has an ability to wound, to heal, to lift up, to destroy, to save lives, and to shuffle lives.  There are always imprints of a life that was supposed to be; melded into the life that is gifted and aborbed into another family.  There are moments of: celebration, sadness,  regrets, and purposeful choices; adoption is a wonderfully, painful mixture of the emotional buffet of life!  It is a parent’s responsibility to seek excellence for the quality of life for their children.

        Our family is special and unique; I bet your family is too!  We have had many successes as a family; as well as, some twists and turns that were unexpected.   The dream of a new parent doesn’t usually include the expectation that things could turn out differently from the dream of a picture perfect family.  A birth family or an adopted family does not get to choose from an ‘ala carte menu, of challenges it may or may not face.   As most parents would say, we live and breath for our children; and yet, we are not ashamed to say at times…we wonder…did we do the right thing?  Our children didn’t get a choice in life in which family they would grow up in.  There are shades of grey for each person…balancing the pros and cons of adoption.

         Whether a child is brought into a family by birthing it into the family, or by adoption…the child is received with awe, with excitement, and with hope for a beautiful future.  There are unexpected situations at times regarding health issues, behavioral issues, attachment issues, emotional issues and even loyalty issues.  Those things and more can affect the foundation of a family.

         Many families are jolted to learn that their child has special needs or that their adopted child has issues that will affect them and their family for years to come.  It is a difficult time for parents and other siblings to struggle to learn about the issues facing the family…because…none of us go it alone. 

          Family is a support system all unto itself…but, sometimes the issues can seem overwhelming.  That is the time that families need to reach beyond their boundaries that are self imposed, because many do not understand what we face as families with challenges.  Don’t let that stop you from reaching out.  You just might be surprised by the impact that you could have on another…or vice versa.

          Really, for many people going through the shattered reality that their family is not following the dream of perfect completion…there is a sense of isolation and a perceived lack of understanding from others who have not walked in the same pair of shoes.

          So, is there a need for support and information for families who have experiences that can mirror each other?  Is there a wealth of understanding that is untapped because we have not had the opportunity to join forces and absorb techniques and encouragement from one another?  I think there is.  I have heard so many comments that would break your heart.  Families that are under so much strain that they threaten to break and disintegrate under the pressure.  If one person or family can benefit from sharing and encouraging each other here; then, the blog will have served it purpose.

         Do you know someone who has things to share?  Do you know someone who could benefit from a little support or information?  Do you know someone who is facing a future with a special needs child and is struggling?  Do you know someone with rose colored glasses that is thinking about adoption; but, isn’t willing to accept anything less than perfection?  Bring them to a place that will enlighten them, encourage them, and embrace them!  Families should be celebrated and enjoyed…not everyone is blessed with people to share their love with.

The Faded Jeans(Blue) theme by Harry Fink is powered by Wordpress 3.4.1