Growing Up Special

        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 heard about a news item recently, it discussed an alleged criminal conduct case that is being investigated regarding some staff members of a residential home for the disabled.  The news report was talking about how the staff was alledgedly “bored” and encouraged/forced some of the residents to fight one another.  If that is true that they did this, then, that is not a fight club…it is abuse and neglect, and failure to protect.   There is supposed to be a video that was allegedly proves some of these accusations.   

      This, if proven to be accurate, is a criminal offense and charges will be forthcoming; hopefully, it will show those who were responsible for such actions against the disabled residents.  According to the news report, the residents did not want to fight one another…the small numer of staff are being accused of chasing some of the residents down the hallway and forcing them to fight one another.  Investigations take time, so it is important to not assume anything, just yet, regarding those rumored to be associated with this case.   However, residents deserve to be treated with respect and dignity; they should feel safe at all times. 

        These accusations, if they are proven true, are frightening to those of us who have disabled loved ones.  It is not easy to make the decision to place a loved one in a facility.  Once that decision is made, trust is a big factor in allowing yourself to have peaceful moments.  Most families do research, on available residences for the disabled; but, ultimately you have to go with your gut and trust that things are on the up and up…and that your loved one is safe.  You hope and pray that you are never proven wrong about trusting a facility and making a decision for placement.  Still, staff members come and go…I think it is wise to remember to follow up with periodic drop in visits…and, have conversations with your loved one, when it is possible, about the day-to-day operations in the place.

          No one can or will take care of your loved one exactly like you do.  However, it comes down to some  basic safety & caregiving facts.  Are the staff & residents carefully screened with criminal background checks?  Are there seperate secure residential rooms for those who have been violent in the past?  What precautions are taken to ensure physical and sexual safety for the residents?  Are they properly trained and geared towards delivering care with sensitivity?   Are there any complaints on file about the facility?  Is there enough staff on duty, at all times, to ensure that things are done correctly and safely?  Do they have an open door policy for family members?  What are the proper procedures for complaints, if an issue or question should come about regarding your loved one?  Are other residents screened for previous physical, and or, sexual abuse?  Are there cameras in the hallways?  Are there phones available for the resident’s use?  How does the staff interact with the residents?  Does your loved one ever express concern or fear about living in the facility? 

         I dont know about you…but, when i hear about stories of abuse or neglect in homes or residential placements for the disabled it makes me angry.  The disabled are one of the most vulnerable segments of our population and they should not have to be put through these kinds of situations.   There are some really great places for the disabled to live and when reports come out about the places that have exploited the disabled or endangered them; it is discouraging.   Have you ever had to place a loved one in a facility?  Do you have any words of advice to share with the readers on these issues?

      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?

The plans had been laid for weeks.  Michael Birdsong would spend a few days of his Christmas holiday with us, his parents.  Every day the phone calls got more intense as we discussed the menu, the sleeping arrangements, the time of the church service…

When the big day arrived for him to come home we arrived at his sheltered workshop right on time.  His suitcase was near the door, as was he, greeting us with wild anticipation for his big, exciting, excellent adventure.

Ah, but the fly in the ointment was that Michael Birdsong was NOT wearing his glasses.  When I asked him about them, he turned pale, because he had no clue where they were.  Worse, he panicked at his imaginative idea that his forgetfulness might mean missing out on his Christmas trip!

His staff was sure those specs must be around the workshop someplace…but upon searching, none could be produced.  We loaded the suitcase, and Michael, and drove off.  He was very quiet on the ride home.

We had a lovely holiday, the menu suited everybody, the decorations were to their liking and the candlelight service on Christmas Eve produced tears of joy for all.  Even the weather was cooperative.

We returned him to his Group Home, with the admonition that he and his staff should surely find those glasses.  By now, the staff was sure they were at another workshop.  Or, it was suggested, they might be in another van.  OR…they COULD even be in that disastrous bedroom, which was almost bad enough for the City of York to condemn!  But no one would know definitively until the room was THOROUGHLY cleaned. 

Did I mention Michael Birdsong is not your average neatnik?  Not even close!

His State Services Coordinator got involved in the search.  Everyone on the administrative staff was on the hunt…for a whole week those glasses had not appeared!  The agency was worried about having to buy another pair of glasses.  SO WAS MICHAEL BIRDSONG, with good reason.

Some brave staff member, Jeanie, took it upon herself to oversee the cleaning of that bedroom.  No telling what they might find, eyeglasses notwithstanding.  The job could not be finished in one day, so when Linda came in on Day Two, she and Michael finally got everything clean.  Well, he still had an old, unused prosthesis, but they did manage to stash that on the van so it could go to the maker to be recycled for parts! 

Yes.  They DID, indeed, find the missing glasses.  Everyone at the agency and everyone in Michael’s family, especially Michael, heaved a collective sigh of relief.  You may have heard it.

His glasses were on the counter in the bathroom!

Connie Baum

 
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        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.

I will never forget the absolute thrill of becoming a mother, bringing home our first newborn baby girl.  I was sure then that I could never love another so much…

Of course, I was wrong.  When the second baby came home…then, the third …we were infused with the very same brand of hope, the same thrill, the same exhilaration we had experienced with Baby #1.  We learned quickly how exponential love can be.

When I became a foster mom the arrival of the newest member of our family was surrounded by different circumstances, but the hope, thrill, exhilaration and exponential love were present as if he had been born to us.

This little boy’s reputation had preceded him:  he was three years old, blond, with blue eyes and the social service worker described him as “appealing”.  What she had not mentioned what that he was the wriggliest kid on earth!  It took a case worker and a case aide to deliver this child to us!  Although he communicated with his flirty blue eyes and his grunts and monosyllables he did not have any degree of language skills.

Nevertheless, our eyes met and we bonded.  I loved him in the same the way I had loved my own flesh and blood when their impending arrivals were discovered!

These three kids, all exited and curious, gathered around the newcomer, stroking his hair, asking him questions, firing queries to their mother about why he didn’t bring more toys.

The back story is that this little guy had been born with multiple reasons for his “first mommy and daddy” to be unable to care for him.  He had an open spine, a shunt to manage spinal fluid, double club feet and he was incontinent.  Because of his special needs, the little charmer had been shunted from pillar to post.  He lived in a children’s hospital, an orthopedic hospital and foster homes during the first three years of his life.  Before his arrival to our home, he had been in four foster homes in three months, and three of those homes in 21 days.  It was no wonder he was wriggly and cute!  It was the only defense he had if he hoped to stay in one home for any length of time!

For our first dinner with him, fried chicken was on the menu.  We put him in the highchair that had served our own kids and set a melamine plate before him.  On the plate was a drumstick.  We were not sure what foods he could eat but thought finger food could be a winner.  He took the plate in one hand and the drumstick in the other and threw them in two directions!  Our children, wide eyed, were AGHAST!  That memory is one we all carry in our heads but we grin about it now.  Even that little boy, all grown up now, laughs about his childish table manners!

When it was bedtime I could not find our nine year old daughter.  At long last I discovered her on the floor of her bedroom closet.  She was crying.  She showed me the entry she had made in her diary:  “Today our new brother came to live with us and he is as wild as an Indian.  All the kids at school will make fun of him but I love him already.”

Connie Baum

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        I have been reading a book called, Love You To Pieces.  It is a collection of written pieces on raising special needs children; some pieces are true and some are fiction.  It is a book rooted in real life challenges facing parents of special needs children.  It is not a Hallmark moment kind of book filled with false illusions of perfection. 

         Every family that faces issues in raising special needs children finds themselves learning how to do it in a way that is workable for their particular family.  No one can go to a doctor or a website and find a perfect way of coping that is workable for each and every person in that situation.  There is often no right way to do it.  Many times in raising our children we have to learn as we go.  Sometimes what worked the day before no longer works and we must adjust our technique.

         This book showcases the emotional and the practical side of parenting challenged children.  It is real and gut wrenching and truthful.  The physical difficulties that parents face as their special needs child grows and their abilities do not.  The doctor appointments that reveal multiple challenges that were unexpected.  The public perceptions that both hinder and inspire progress.  Siblings that are supportive and friends and relatives that are not.  Relationships that support each other and relationships that flounder under the strain.  Moments of denial and acceptance.   Judgements and advice by people who have no real idea of what it takes to raise a special needs child successfully.   Parenting is a strange mixture of courage and fear…searching for answers that we are sometimes unwilling to accept.  These are issues that we all find ourselves in when parenting special needs children.

           Often times, parents of special needs children feel isolated.  It is a fine balance of looking for opportunities to socialize and educate our children in environments that will impose no further harm or damage upon our children.  This book is a validation of so many issues, that we face, that it is somewhat comforting to know that we are not alone in our struggles.  It is a book worth reading.  It was written by Suzanne Kamata who is a fiction writer for an online magazine, Literary Mama.  The publisher is Beacon Press; their website is:  www.beacon.org and the book was copyrighted in 2008

        Every family is made up of individuals with wants and needs.  Every family is different.  Add a person…take away a person; and, it changes the family dynamics.  Add a need, or take away a need; and again…the whole composition of the family changes.  This is to be expected in the life of every family. 

         Families that are created out of adoption have a multitude of blessings and challenges.  The same can be said of families that have special needs children…whether they are born into the family or adopted.  The term family falls under an umbrella of accomodations; each person’s wants and needs are accomodated into the family unit (or should be).  Your place in the family is guaranteed out of love, acceptance, encouragement and the occasional nudging towards further personal growth.  A healthy family is designed to be a personal support system. 

         My own family has both adopted children and special needs children.  We have blessings and challenges like any other family.   Those blessings and challenges aren’t JUST related to being a family created from adoption, or of special needs; it is sometimes a mixture of both. 

         I grew up in a large family and my husband did as well.  We are used to understanding that each person is unique.  Each person is an individual, as well as, part of a family unit.  Often in my sibling group we had wants and needs that conflicted with one another…my husband’s family as well.  We had to work out any differences between family member’s expectations.  My husband’s family was impacted by some special needs, my family was not.  Neither of our families were impacted by adoption.   And yet, because we came from large families…some would consider our families to be special needs just because of the number of children.   Each person in a family impacts another; that is typical of any family that consists of more than one person.  There is no such thing as a “normal” family! 

          We are blessed with creative thinkers, business minded or logical thinkers, nurturers, artistic individuals, readers, non-readers, free thinkers, outgoing personalities, highly verbal personalities (how come i didn’t get any quiet personality childen?) LOL, musical, non-musical, conformists and non-conformists, high IQ-low IQ, flexible and non-flexible personalities; you get the idea.  We are a creative mix of likes and dislikes.  It is a balancing act at times trying to meet everyone’s needs.  But, it is done because we want to; we desire to recognize each person’s requirements to be successful, to be healthy and happy. 

           Each family has a story; it has a beginning, a middle and an end.  Everyday we are writing new pages to add to the story.  Those stories are of interest to others because we can learn from one another.  We can share in the laughter, the confusion, the joy, the sorrow, the sense of betrayal or anger that fills a family with a lifetime of experiences.  The stories of your family can mingle with other family stories to create a sense of encouragement,failure, discouragement, success, education, or compassion. Experiences can draw people together or set them apart. 

            Isolation is sometimes a part of family life when you are raising adopted children or special needs children; just because of the lack of understanding; or, perceived lack of understanding, of those in your social circles or community.  It is very important to find support in those times of feeling isolated by behavior difficulties or by circumstances.  

           We must learn to live in the moment…not be defined by labels or expectations.  Each day, each moment is open to interpetation.  We can stop, we can reread, we can change directions and we can grow and learn.  Sometimes people get a label and try to skip all of the chapters in between the beginning and the end…they just want to go to the end of the book and see how the story turns out.  It is in the daily living…getting the most out of each and every moment that we are given to live, that we find fulfillment and joy. 

          So, what’s your family’s story?  How was your family created?  Is your family life the way you expected it to be?  If yes, why?  If not why?  What would you change if you could?  Can you change it?  Can you change how you think about it?  What impact does your family have on each other; what impact does your family have on others around you?  What does family mean to you?  What do you love about your family?

        Tonight a speach was given that was wonderful to hear.  Whether you are a Republican, a Democrat, or an Independent person politically; it was good to hear Sarah Palin, the Republican nominee for Vice President declare that “when” she and John McCain are elected…families of special needs children will have an advocate or friend in the highest offices in the United States government.  That is something that we families have needed for a very long time!  So, i say kudos to her for raising the awareness of the American people.  She is the parent of a young baby who is affected by Down’s Syndrome.

        Ok, I know in practical terms…teaching independent living skills along the way while raising children is just common sense.  However, as one of my children is approaching his last year in high school…it feels like I have an egg timer alongside of each day.

         My son is a senior in high school.  There is not much time left to teach him some really important lessons.  Where we live, in a rural setting, there is not some great program available to him to continue educating him after graduation.  In Michigan, if my son goes for his diploma at the end of the year; as opposed to a certificate of completion…his educational opportunities as a special ed student come to an end.  If he wanted to continue in the school system, he could choose a certificate of completion…but, the only available program for him is a daily living skills program.  While that is a valuable tool, it doesn’t in my opinion outweigh the benefits of going for the diploma.

          Because we live in a rural area….there is not much opportunity for employment, in general, let alone if you have special needs that can hinder your employability.

           The things that are important to my son at this stage of his life…are dual edged.  He wants to drive a car.  He wants to hunt.  He wants freedom to make his own choices.  He wants to work.  There is nothing wrong with wanting those things…but in some cases, those very things are difficult to achieve or not in that person’s best interest.

           My son’s abilities are limited because of several factors.  He reads at a first grade level…and that, is with difficulty.  He has problems with assessing safety situations.  He is wanting to work…but sometimes, has trouble staying on task and focussed.  These issues are going to limit his ability to hunt, to drive, to live on his own without some sort of safety backup plan. 

            Our plan is to work with him on planning meals and grocery shopping; he also likes to hoard food and eat it almost as soon as it is purchased :)  That won’t be condusive to living on his own if he cannot somehow understand the concept of planning and executing a plan for purchasing and divying up the food purchases to make up meals for a set number of days at a time.  He will have to show more care with personal hygene; it isn’t high on his list to change his dirty clothing when going away…he just doesn’t think about it.  He will need to learn to think ahead for those situations.

            We are wracking our brains trying to come up with some type of job that he is able to do and excited about doing.  Many of the types of jobs he wants are not realistic.  We have enrolled him in an class that will be working towards teaching him an employable skill.  I think he will take pride in this; if he continues to enjoy it once he gets into the curriculum.

            Housing, we are blessed that we were able to plan ahead for this years ago.  We purchased a house next door to us years ago with the intention of using it for independent living skills for our boys as they became ready.  This will allow close supervision but also allow for them to feel independent and “free” to be a grown up.

           This year will hold many surprises and advancements.  It is an exciting and scary time for him and for us.  We all have a lot to learn as we transition to adulthood together!  Here is a great link of things to consider when easing into independent living:  http://www.teachersfirst.com/sped/parents/transition/eric-lifeskills.html