In a copy of a family -type magazine (TODAY'S CHRISTIAN WOMAN)-came this story and to fully understand it, you have to know that Barney is a purple dinosaur on children's young programming who is always singing about how much he loves us. SO that told...." A woman took her four-year-old granddaughter to the doctor's office with a fever. The doctor looked in her ears and said, "Who's in there? Donald Duck?" She said, "No." He looked in her nose and said, "Who's in there? Mickey Mouse?" Again she said, "No." He put his stethoscope on her heart and said, "Who's in there? Barney?" Amanda replied, "No, Jesus is in my heart. Barney is on my underwear."
Here�s some Xmas parenting :advice I saw in another magazine- Shouting to make your children obey is like using the horn to steer your car, and you get about the same results.
You better watch out/ You better not cry/ Better not pout/ I'm telling you why/Santa Claus is coming to town!
He's making a list/And checking it twice;/ Gonna find out Who's naughty and nice/ Santa Claus is coming to town!
He sees you when you're sleeping/ He knows when you're awake/ He knows if you've been bad or good/So be good for goodness sake!
What pressure! Imagine if you are literally unable to control your behavior for variety of reasons we will soon discuss. How must this season make you feel especially? How must it make the parents feel? I have to make a confession. I used to sing that song to my three beautiful little daughters around Xmas times every night for bedtime! And I used it as leverage! Yes, I�m ashamed to admit, now, but I did. Of course, my girls were perfect! Just like so many of our parents seem to use God and the fear of Hell! Eternal punishment!
Isn�t it interesting that Jesus seemed to like children, and when his disciples tried to shoo away some kids who wanted to see and meet Jesus, he got kind of mad at the disciples and scolded them, saying something like let the children come and maybe even learn from them, because you must become like a child to enter heaven.
That was different than what had been taught about children- that they should be seen and not heard, that if we spare the rod we spoil the child, etc. You�ve heard it before- there was no special ed when I was growing up, you either towed the line or you got smacked up the side of the head, and it made a man of you. or a woman, I guess. Spare the rod and spoil the child. The Bible says.
The California State Dept. of Education said something interesting in a paper my daughter Elizabeth brought home many years ago called The Thinking Curriculum in the Elementary Years :
Children are seekers of meaning. No sooner do they learn how to talk than they begin asking questions about the simplest things as well as about the dilemmas of human existence that have perplexed philosophers and theologians from the dawn of time.
My formative religious years , until we moved when I was 10, were spent in a little white clapboard New Hampshire church in a small town that had only one church a combination Baptist and Congregational one. The only stained glass, was a small circular window in the back over the altar; a beautiful picture of Jesus sitting on a rock with a child on his lap and other children around him, and I think the Bible verse about you must be like a child to enter heaven. It was always a very comforting and loving way for me to picture Jesus and the whole idea of Christianity and religion- that I, as a child was valued and loved! Not all churches, including UUs are as welcoming and valuing. Especially, if any of those children have special needs, that is, don�t fit the nice normal quiet well behaved and nice looking mold! Seen, but not heard.
We are blessed with many special needs children in our congregation, and I�ve talked to most of their parents, and I am proud that they also talk about how blessed they feel that this congregation have made them feel welcomed into their midst, especially in our Religious Education program for past years under various directors. One of the reasons we hired our recent Director of Religious Education, Halcyon Domanski was not just because she was the parent of a wonderful son, Max who has autism, but because of the way she has handled it and the way she reacts with all children; her love and acceptance of all children as creative human beings deserving of love and respect reflect what we believe should be our mission and message as well, and the first three of our UU principles- which is not limited to adults, but should apply to all ages-- The inherent worth and dignity of every person; Justice, equity and compassion in human relations; and Acceptance of one another and encouragement to spiritual growth in our congregations.
In her book, The Gift of Faith, Tending the Spiritual Lives of Children, UU Minister, Jeanne Harrison Nieuwejaar wants us to remember that children are born with an innate connection to the sacred and the holy and that it is the parents responsibility to nurture the Childs spiritual nature..It is the essential role of the congregation to nurture what Educator Thomas Armstrong calls the radiant child:
This is the essence of the radiant child. Belonging to both heaven and earth, the radiant child dances into our lives as a bridge between dark and light, body and spirit, ego and Self, the individual and God. The radiant child spans and sings the wholeness in every fiber. We would be wise to listen. Even better to sing and dance along!
From Welcoming Children with Special Needs: A Guidebook for Faith Communities by Sally Patton, who has Masters in Developmental Psychology and is the parent of a Special Needs child, conducts workshops on spiritual parenting and healing. She uses traditional labels, she says. to describe various disabilities, special needs, differences, challenges, and difficulty is used instead of disability to humanize the diagnostic process. The person is presented first and then the disability, so that the text reads a child with a disability not a disabled child....
All children have behavior problems and all parents worry about their children! Perhaps the best thing we can do today is not to compare today and today�s children to yesterday and yesterday�s children. for a variety of reasons, but especially for our own sanity and for our children's sanity. Our parents and your parents child rearing habits are not necessarily going to have any relevance to today�s children and today�s problems and anxieties. Remember when chewing gum might be the most severe behavior problem in school? I can remember when there was a dress code! But you see, how quickly we can start comparing and quickly generalize our childhood onto today, and that�s not only not fair, it�s not relevant! Many times those who didn�t fit in were quickly removed and hid away, sent away. locked away. institutionalized for the rest of their lives, and yes, sometimes they were better off, but it was rarely if ever their choice!
I want to give you a kind of list of possibilities of why a child may not be able to be good, so to speak. But I want to give some cautions. Medicine, Psychology, and psychiatry are not really exact sciences, but opinions, in that there can be differences in one Doctor and another in both cause and treatment. That is probably nowhere more true than in child psychology and psychiatry, so I�m going to be basing material on Patton�s book and on my experience 15 years working with either Special Education, Group Home, or as a counselor in Residential treatment for the Mentally Retarded, Emotionally Disturbed Children and Youth, and Psychiatric Hospital. Many of these talk about continuum of problems because everyone is just a bit different, because everyone�s brain chemistry is just a bit different. That�s why antidepressants work differently with different people and why sometimes some antidepressants can lead some people at various ages to actually commit suicide when it should be preventing it!.
Larry B. Silver, writes in The Misunderstood Child: about what it is like to be a special needs child:
I think that when I was born, I was put in a rocket ship and taken to another planet earth. I never felt like I was like anyone else here. From the time I was five. I can recall feeling like an outsider. I first remember feeling like an alien when I tried to communicate. People would raise their eyebrows and make other facial expressions of confusion when I tried to express myself. Constant rejection created feelings of isolation and isolation created anger and anger created self-defeat.
Possible problems- and many of these are teaching and/or psychological diagnosis:
Multiple Learning Disorders-dyslexia-difficulty understanding words, sentences, and paragraphs, reversing letters dyscaculia- difficulty solving arithmetic problems and grasping math concepts dysgraphia-difficulty with letter formation and writing within a defined space auditory and visual processing disabilities-difficulty understanding language despite normal hearing and vision nonverbal learning disorder-
ADD Attention Deficit Disorder- Difficult controlling impulsive and distracting behaviors maybe 15 million Americans have it but might not know it ADHD Attention Hyperactivity Deficit Disorder Also on continuum
The world that is experienced by children with autism or Aspergers syndrome is very different from that which most of us experience. ...... a neurological disorder that affects brain functioning in the areas of social interaction and communication skills. Aspergers Syndrome sometimes called high-functioning autism.
A spokesperson for people with Autism. Temple Grandin, with the help of a devoted mother earned a Ph.D.. and went onto become a successful animal scientist and author of Thinking in Pictures and Other Reports From My Life With Autism. If I could snap my fingers and be non-autistic, I would not. Autism is part of who I am. .
Once a severely abused and autistic child, Donna Williams completed a remarkable journey of recovery to self awareness as autistic person and successful career as a college professor. She tells her story in Somebody Somewhere, Breaking Free from the World of Autism. Williams says The most important thing I have learned is that autism is not me. Autism is just an information-processing problem that controls who I appear to be.
In Son-Rise:The Miracle Continue, Barry Neil Kaufman recounts how he and his wife Samahria brought their son, Raun out of Autism. They now run a foundation that works with an alternative program working with Autism that our members the Reid�s work with. It is one of the ways that might be considered a natural alternative without using medication. Again there are a continuum of treatments as well.
Mental Retardation and Developmental Delays In recent years growing trend is to use Developmental or cognitive delay instead of mental retardation and the AMA American Association of Mental Retardation also uses intellectual impairment. Down syndrome--a significant and lifelong limitation in both intelligence and adaptive skills in relation to normal development.
Leon Cytrn and Donald McKnew, Growing Up Sad, Depression is certainly the most widespread mental and emotional disorder afflicting humankind, and very probably the oldest.
Depression with other disorders can be what is called comorbid conditions, ADHD Bipolar, what used to be called Manic Depression, oppositional defiant disorder, learning disabilities, etc.
Situational depression is different from major depression or clinical depression
Anorexia nervosa self starvation- they feel like they look fat even when in reality they are may be normal or even thin, and starve themselves until they become skeletal and literally may starve themselves to death. Bulimia nervosa, binge - eating followed by making yourself vomit or using diuretics or laxatives, unlike anorexia they may retain normal weight and therefore remain undetected also- compulsive over eating
Toxic worry is a disease of the imagination. It is insidious and invisible, like a virus. As worry infiltrates your mind, it diminishes your ability to enjoy your family, your friends, your physical being, and your achievements because you live in fear of what might go wrong. It undermines your ability to work, to love, and to play. Edward Hallowell, Worry, Hope and Help for a Common Condition
Doesn�t it make you wonder if we are suffering that as a nation? FDR brought us out of the depression and partly by that statement the only thing we have to fear is fear itself.
Agoraphobia- fear of losing control in public places-panic attacks Social Anxiety Disorder or social phobia profoundly anxious about what people will think about them, worry about being embarrassed or humiliated Selective Mutism, sometimes a symptom of Posttraumatic stress disorder from sexual abuse, but basically avoiding some social situations by shutting themselves out verbally in some situations, extreme shyness
School phobia anxiety based school refusal 2 to 5 % of school age population
Separation Anxiety Disorder
Generalized Anxiety Disorder GAD excessive or unrealistic worry about a wide variety of situations - perfectionists, don�t know what they are worried about-
Panic disorder- rare in younger children, but happens in older and adolescents
Posttraumatic stress disorder
These really are just a few of the countless disorders and problems that might affect children who have special needs, and remember the idea of the continuum, the spectrum and comorbid disorder, more than one disorder together. These are also what might be called extremes that prevent children from doing what most other children can. Most children might go through many of some of these things some of the time, but not be completely w taken over by them. I have worked with a wide variety of children and youth and usually enjoyed it, whether they were what used to be called mentally retarded, emotionally disturbed or psychiatric. Because, first they were people, and you had to learn to love them and they learned to love you and you became in relationship and were blessed by knowing them; they brought a new spiritual dimension to my life, and yes, sometimes they wore me out, but what a profound experience it was working with them, helping the, to help themselves, and how terrible disappointing it was when one of them would fail and perhaps leave the program and I would hear that they had committed suicide, perhaps. Yet I know how their lives were enriched by the staff that cared so deeply for them for the time they were in residence, the teachers, counselors, social workers. These were children and youth from the inner city of Philadelphia who had severe behavior problems for a variety of reasons probably a little of all of the above that we would work with various behavior management therapies. Like parents, we talked to them, listened to them, played with them, tried to be firm, consistent, loving, understanding, and help them to succeed.
While reading a book entitled Targeting Autism, by Shirley Cohen, my Special Ed teacher wife Cathie, read me 2 poems that I found profound and inspiring. They were written by autistic children who had made progress;
From Being Autistic,
I built a bridge
out of nowhere, across nothingness
and wondered if there would be something on the other side.
I built a bridge
out of fog, across darkness
and hoped that there would be light on the other side.
I built a bridge
out of despair, across oblivion
and knew that there would be hope on the other side.
I built a bridge, a strong bridge,
a beautiful bridge.
It was a bridge I built myself.
With only my hands for tools, my obstinacy for supports
my faith for spans, and my blood for rivets.
I built a bridge, and crossed it,
but there was no one there to meet me on the other side. Jim Sinclair (Cesaroni and.. 1991,311-12)
I have known that you and I
have never been quite the same.
And I used look up at the stars at night
and wonder which one was from where I came.
Because you seem to be part of another world
and I will never know what its made of.
Unless you build me a bridge, build me a bridge,
build me a bridge out of love... Thomas McKean (1994,43)
So how can you help? How should you treat what can you do to help. Give parents of Special Needs kids the benefit of the doubt; Don�t assume that if only they would be tougher. the kids would mind! Say hi to the kids, but accept whatever greeting you get, even if they don�t respond. Be patient, Don�t rush them. Don�t stand too close. Observe them before you go up to them. Maybe see how they react to other people. They might not want direct eye contact. Maybe ask their parents what they like. Ask them what they like. Maybe get to know them. There�s nothing more welcoming than when a grown-up takes an interest in the children of the church, yet in this abuse-conscious age, we must also be aware so make sure everything is public. And oh, yes, you might want to try teaching Sunday school! There�s a rotating schedule so you don�t have to do it every Sunday! And you get to meet the greatest kids in the world.
You may think I'm different
The way I think and play
But wouldn't life be boring
If all was the same way
See I will change this world
A little bit by bit
And when my life is over
This will be my gift
I'll leave the world a thinking
A mix of logic and my dreams
And there will be no limits
Nothing will seem extreme
Think of it like ice cream
Some are just vanilla
I'm a rainbow swirl
All colors a shimmer
By Lewis age 7, with some help from mum
Amen, Shalom, (Peace in Hebrew), Assalaamu Alaikum(may Peace be upon you inArabic), Abrazos a todos (Hugs all around) Namaste, (A Hindu greeting thedivinity within you) Blessed Be, and let me add one more blessing that Iadapdted from the Spanish long before I went in to ministry. Vaya con Dios is Spanish for Good-bye, but literally is Go with God, SO I adapted it to sayVaya Con Su Dios, Go with your idea or interpretation of God.
A 13 year old special needs child named Mattie Stepanek died 4 years ago and I want to talk about him for aminute or the opening words. Do you remember his name, because he became world famous. At his funeral. Jimmy Carter Spoke, and so did Oprah Winfrey and Sean Astin, who starred in the Lord of the Rings films (among Mattie�s favorites). And oh yes, Mattie had 2 books of poetry on the NY Times best seller list; He had been writing poetry since he was three and that was difficult since he had muscular duistrophy. Indeed, he had literally become the poster boy for Muscular dortophy. He suffered his entire short life with a rare kind of Muscular Dystrophy, on oxygen, limited to awheel chair, yet every photo of him in the People magazine, oh did I mention the 3 page spread, in June of 2004, looks like a smiling Harry Potter, indeed a smiling Buddha!
Facing the Future
Every journey begins
With but a small step.
And every day is a chance
For a new, small step
In the right direction.
Just follow your Heartsong.
his book, Journey Through Heartsongs:
Some people think that/ Wishing is childish./ But, wishing is / for everybody./ Wishing can help the/ Old feel young, and/ wishing can help the/ young grow into the/ wisdom of age./Wishing is not/ prayer or magic,/But somewhere in between./ Wishing brings optimism,/And wishing brings hope./And like prayer and magic,/Wishing brings new ideas,/ And sometimes,/the touch of a new life./ And that, is essential for our future. He talked about a video time capsule he had made saying What matters most to me is that I wake up each day and take a breath. I appreciate watching the sun rise and set, knowing that they are gifts, not things to be assumed. And he wrote this about 9/ 11 when he was 10!
We need to stop.
Stop for a moment
Says or does anything
That may hurt anyone else.
We need to be silent.
Heart Silent for a moment
Before we forever lose
The blessing of songs
That grow in our hearts.
We need to notice.
Notice for a moment
Before the future slips away
Into ashes and dust of humility.
Stop, be silent, and notice
In so many ways, we are the same.
Our differences are unique treasures.
We have, we are, a mosaic of gifts
To nurture, to offer, to accept.
We need to be.
Be for a moment
Kind and gentle, innocent and trusting,
Like children and lambs,
Never judging or vengeful
Like the judging and vengeful.
And now, let us pray,
Differently, yet together,
Before there is no earth, no life,
No chance for peace. September 12, 2001
Matthew Joseph Thaddeus Stepanek
The Sufi poet, Rumi writes Be a lamp, a lifeboat, or a ladder. Mattie Stepanek, a special needs child did not let his problems, his special needs get in the way of his life. What could have motivated him to do what he did despite all that he had to endure? I know that he must had special parents, teachers, siblings, friends, to have encouraged him so, that he drew strength from the love that must have surrounded him, but that there was also an inner strength that he drew from, that he tapped, that he found, that I believe we all have if we will only but look deep enough or long enough or want enough. Let us all be lamps. lifeboats, ladders.