Autism and Faith

This video was put together by Sahara Cares.  This is a great tool to validate how you may feel about spectrum disorders or disabilities in general and how they impact your family's experience with worship services. 

Education is power. When those around us are educated, they become more accepting, understanding, and compassionate.  Please share so that the spirit of inclusion may be ever present in our religious gatherings and services.

Tantrums v. Autism Meltdown

Autism is much more complicated than this comparison...I understand.  But it's simplicity could also be helpful for some.

Peaceful Child

There have been so many successful and wonderful stories as a result of this blend of essential oils. There has even been a news story about it on MSN.

Peaceful Child Essential Oils Blend: Why.



Peaceful Child Essential Oils Blend: How.

Footsteps With Jacksen

I'd never seen the place
Where true beauty lies
Until I found it twinkling
In those magical blue eyes.


The way they laughed and sparkled
Like they were dancing to a song,
Those precious eyes held secrets
I'd learn you stored before too long.
As you grew I began to notice
You would shield those big blue eyes,
You wouldn't share your sparkles,
Just the tears formed from your cries.
You did not care for company
Or friends to call your own
Instead you spent your playtime
Lining cars up all alone.
While other kids made milestones
I waited for the day
Your words would flow together
And you would have something to say.
Something deep inside me
And something in those eyes
Told me there was an answer
To his heart wrenching cries.
The day I learnt that AUTISM
Was to become etched into my heart
Was the beginning of a life
Filled with magic from the start.
The days I feel disheartened
Alone and filled with fear
He finds a way to show me
Why I'm meant to be right here.
I am meant to be his mother
He is meant to be my son
We are meant to face together,
This journey just begun.

By Fiona Goldsworthy

Walk Now for Autism Speaks

5k's are going on around the country to raise funds, awareness, and support for Autism. I know that many of our children fall in the spectrum. If you'd like to support an event near you, go here to find out the details!

Just A Little Reminder

Sometimes words and actions can be hurtful. Being the grandmother of a beautiful little girl who just happens to have C.P. I am reminded everyday how words can be hurtful, more often than not these words are not meant to be offensive, or hurtful, it is simply the lack of understanding.

So I thought I would just subtly remind people to choose their words a bit more carefully. I can’t tell you how many times in a week, Hailey comes up in conversation (well, hundreds of times actually, after all I am a proud Grammy). Very often when I happen to see or hear from someone that I haven’t heard from in years or perhaps it just comes up in general conversation that Hailey has C.P. It never fails, the dreadful words slip off their tongue effortlessly and without much thought “...Oh, i’m so sorry, that must be so difficult, is this something that she will grow out of” or how about this one...she will never have a good quality of life. Though I am well aware that her quality of life will be compromised, the reminder is unnecessary and I chose to focus on challenging her everyday and promoting her independence. These are the kinds of things that will benefit her best. I’ve heard people say that people with C.P. and other disabilities are not normal, and I can’t help but wonder who decides what “normal” is.

As defined in Wikipedia... In behavior, normal refers to a lack of significant deviation from the average. The phrase "not normal" is often applied in a negative sense (asserting that someone or some situation is improper, sick, etc.) Well, Hailey is not improper at all. Actually her actions happen to be more proper than the people who ask these silly questions or make these remarks without thinking them through. Now, don’t get me wrong, I am not saying that I didn’t do or say similar things before Hailey was born. I had no idea what to say or how to act around others who had a disability. But now I know better, and I want you to know better too.

Always be aware of the impact your words can have on others.Teach your children that it is o.k. to talk to people who have a disability, otherwise you are not only sending my child the wrong message, but your child as well. I think it is all in the education, it is the process by which society deliberately transmits its accumulated knowledge, skills and values from one generation to another, so please, pass it along.

Sarah's Story

by Lesley of My Morning Glory

Sarah is my third child. The icing on my cake- as they say. After two boys it was exciting to be having a girl. The boys were 7 and 11 when Sarah was born. I had all available prenatal testing and she passed with flying colors. I was a single parent and wanted to be prepared in case there were to be issues. But it appeared all was well.

Sarah arrived one week early at 8 pounds 8 ounces. Very easy delivery after an uneventful pregnancy. She appeared healthy and I took her home 2 days later. No immediate signs of the troubles ahead.

The first warning sign was at her 2 week checkup. She had not gained the appropriate amount of weight, in my opinion. The pediatrician thought she was fine. I was breastfeeding and thought maybe with the 2 boys and running around my supply was low. Or maybe whe was having trouble nursing as she would frequently pull off to catch her breath. It was like she couldn't coordinate the sucking/swallowing thing. At any rate, whatever the reason, I went cold turkey to formula bottles. And then she gained like a champ. She still pulled off a lot but got much more nourishment through the bottles.

The next sign was at 3 months when I took her for her first portrait session at the photographer's. She could barely hold her head up to prop on her elbows, like the boys did at that age. Then she didn't roll over till 6 months, then she couldn't babble unless the bottle nipple was in her mouth, then she didn't sit independently until 10 months, she could not crawl on all fours or pull to stand or use a pincer grasp. Basically, her gross and fine motor skills stalled at about a 7 month's old level. Which is where they remain today. She is almost 15 years old now.

And where was the medical community in this? They were not quite sure what was going on with Sarah. The neurologists had no answer. She was given the diagnosis of CP "for insurance purposes" but we knew that wasn't it. She continues to hold that diagnosis today purely for the insurance.

Some of Sarah's issues seemed to get worse gradually over time. She lost the ability to hold a cup and drink out of it, the ability to pull herself along on her belly, the ability to babble, the ability to finger feed. She lost them so slowly I almost didn't notice it.

At the age of 4, I remember discussing with her physiatrist the possible diagnosis of a cognitive disability. Her physiatrist disagreed with me and said Sarah more closely resembled a child with autism. So she was seen by an expert in the field, who said Sarah only had features of the condition, not enough for a diagnosis.



At this point I had a darling little girl with atypical cerebral palsy and features of autism. And it remains official to this day.

Every few years I take Sarah to a geneticist to review any new discoveries in the chromosomal world. She is tested for this or that but nothing has been found abnormal in any of Sarah's testing.

Sarah's situation most closely resembles Rett Syndrome. I had stumbled upon a support group on the internet 10 years ago. This group was for the parents of undiagnosed children that appeared to be a mix of Rett and Angelman Syndromes. Sarah fit right in. Even though she tested negative for both. As the years went by, she swayed more to the Rett side where she still sits today. She cannot walk, talk, feed herself or change her position. She is legally blind. She is full care in every possible conceivable way and then some :)

I think of her as affected by Rett Syndrome. I belong to Rett Syndrome support groups. She is followed by the RS department at Children's Hospital in Boston. She continues to test negative for it and she is retested every few years as the science improves. It is through other Rett parents that I learn how to manage issues with Sarah. They are an invaluable resource, offering encouragment, ideas and support. I have gained confidence in her care, learned to think outside the box for her schooling, and discovered how smart Sarah is.

So that's the medical side of things, which really is not Sarah's story, in my opinion. Those are just the facts. THIS is Sarah's Story:

Sarah is a gift. I know it sounds cliche, but there is no other way to say it---she is a jewel, the best thing that could have happened to our family. I cannot imagine how we could possibly have landed such a wonderful child. I felt this from the very beginning. I just knew from early pregnancy that there was going to be something glorious about this little person. And, eventually, no matter what I was told about the severity of her limitations, I just didnt care. It didn't matter. She was awesome just the way she was and I was so grateful to have her.



I feel privilged to be her mother. I am thrilled to be able, in this lifetime, to have the chance to experience raising both 'normal' children AND a special needs child. Not everyone gets that opportunity. I have no desire to change her or 'fix' her. I'll take her just as I got her.

My sweet girl.



The funny thing is, it is exactly the opposite of what most people think. I have found that the general public looks at Sarah as a hardship, a burden, that I must have extraordinary strength and endurance to take care of her, that I need a God's blessing to get through it and to cope with the calamity in my life. I see pity. I hear: 'I dont know how you do it'.

Well, if I could shout this from the rooftops, I would:

I have already been blessed... WITH THIS CHILD. She is delightful! We cannot do enough for her! She brings happiness! She brings joy! She brings laughter! She brings lessons! She brings contentment! She brings peace! She brings simplicity! She enriches our lives! We do not cope, we savor! She is a positive in our lives! We are lucky! We are grateful! It matters not a bit the things she cannot do! We learn from her!... Surprise, everybody!

The thing is, we are not teaching Sarah, she is teaching us. And I share her with whomever shows any interest. People need to know these children are not tragedies, they are amazing, wonderful, inspiring people, just the way they were born. There is nothing 'wrong' with them. They are perfectly themselves. These kiddos give more to us than we will ever be able to give to them. I want everyone to know. I want Sarah to have the opportunity to give to them, to show them another way, to challenge their view.

Because that's what she's on this earth to do. Teach.



And that is Sarah's Story.

Bending

I am asked to be flexible
So I bend this way and that
Stretched to the limit

Between too much and not enough
Lover and fighter
Parent and therapist

Between reason and emotion
Fact and fiction
Science and faith

I am stretching between wife and mother
Better and worse
Me and us

Between a boy and a girl
Four and two
One with Autism, one without

Between joy and fear
Hope and despair
What is and what might be



I am bending until my back hurts
And my heart aches
I am bent

But never broken.

Written by Jennifer Post of Want a Peanut?
Re-posted with permission.

Primary and Secondary Therapies for Sensory Processing Disorder and other Issues

(....from Growing and In-Sync Child, by Carol Kranowitz and Joye Newman (Perigee 2010) and from a handout given to me by Carol Karnowitz when I attended her seminar on SPD, at Utah State University, in Logan, Utah; in 2010.)

Many of the individuals who have 7q11.23 Duplication or other syndromes or disabilites also have trouble with some aspect of Sensory Processing Disorder (SPD). SPD has also been referred to as Sensory Integration Disorder. The list below includes basic information about some professionals and their therapies that may benefit a child with Sensory Processing Disorder. For more details and information, see http://www.spdfoundation.net/.

But first, what is Sensory Processing Disorder?

Think of a developing child as a tree. The stronger the roots, the more nutrients will be absorbed, the more anchored the tree will be, and the sturdier the trunk and branches will grow. A child with strong roots is likely to grow into a sturdy, thriving, blossoming individual.



We think of a child's roots as having three major components - Sensory Processing skills, Perceptual Motor skills, and Visual skills. Sensory Processing Disorder occurs when these core areas are out of sync.

Sensory Processing involves touch, movement, and position senses. These are all primary to development. Tactile processing refers to touch or being touched by either a person or objects. Vestibular processing is taking in sensations about the pull of gravity through the inner ear and then responding to these sensations. And proprioceptive processing is the unconscious awareness of sensations coming from muscles and joints.

Perceptual Motor skills depend upon a sound sensory processing base. These skills include balance, bilateral coordination, body awareness, directionality, mid-line crossing, motor planning, and spatial awareness. Visual Processing is the interpretation and response to information received through the eyes. Some essential visual processing skills are acuity, binocularity, and visual tracking.

Primary Therapies

Occupational Therapy using a Sensory Integration Framework (OT-SI)

Professional: Occupational Therapist (OT)

The ideal OT is one who has received additional postgraduate training in sensory integration theory and treatment. The specific goals of occupational therapy using a (OT-SI) framework are to improve the person's social participation, self-esteem, self-regulation and sensory-motor abilities.

Under the guidance of a therapist, the child actively takes in movement and touch information in playful, meaningful, and natural ways that help his brain modulate these fundamental neural messages.

Physical Therapy

Professional: Physical Therapist

Is a therapy that is devoted to improving an individual's physical abilities. It involves activities that strengthen the child's muscular control and motor coordination, especially in large muscles.

Secondary Therapies (in alphabetical order)

Auditory Therapy, or Auditory Training

Professional: Audiologist, Speech-and-Language Therapist, Occupational Therapist, or other qualified specialist

A method of sound stimulation designed to improve a person's listening and communicative skills, learning capabilities, motor coordination, body awareness and self-esteem. Various methods employ the use of special headphones. Over several days, the child listens passively to music and voices filtered through the headphones and then participates in active voice work, such as repeating sounds, reading aloud, and conversing. therapy helps the ear to attend to and discriminate among sounds, the vestibular system to integrate sensory messages of balance and posture, and the person to become more focused, centered, and organized. The Therapeutic Listening Program, designed by Sheila Frick, OTR/L, is an excellent home program that is supervised by a therapist while the child is receiving services. See: http://www.tomatis.net/, or http://www.vitallinks.net/.

Brain Gym

Professional: Licensed Brain Gym Practitioner

The Brain Gym system is a set of 26 specific movements developed by Paul Dennison PHD, based on research in Educational Kinesiology. Educational Kinesiology studies education, child development, and physical movement of the human body as it relates to learning and expression skills. The system readies the body to learn by integrating visual, auditory, and kinesthetic functioning. It stimulates the nervous system equally in all brain parts, minimized one-sided brain reactions, and strengthens neural pathways between the two hemispheres. The activities effect rapid and often dramtic improvements in concentration, memory, reading, writing, organizing, listening, physical coordination, and more. See http://www.braingym.org/.

Chiropractic

Professional: Chiropractor

Chiropractic is the philosophy, art and science of detecting and correcting subluxation in the human body. Subluxation is a partial dislocation or abnormal movement of a bone in a joint. Chiropractic helps children with SPD by specifically addressing the structure and function of the nerves, muscles, and joints controlling posture and movement that influence our ability to interact with our environment. http://www.icpa4kids.com/ or www.chiroweb.com/find/children.html.

CranioSacral Therapy (CST)

Professional: Occupational Therapist, Physical Therapist, Chiropractor, Osteopath, Massage Therapist, or other Registered Craniosacral Practitioner (RCST)

CST is a gentle method of evaluating and enhancing the function of the craniosacral system (the membranes and cerebrospinal fluid that protect the brain and spinal cord). CST involves light touch manipulation of the bones in the skull, sacrum and coccyx to correct an imbalance that can adversely affect the development of the brain and spinal cord and can result in sensory, motor, and neurological dysfunction. Developed by Dr. John Upledger, CST is used by a variety of health care professionals. Contact: The Upledger Institute, http://www.upledger.com/ or http://www.craniosacraltherapy.org/.

Hippotherapy (therapy with a horse)

Professional: Certified Instructor

Hippotherapy means "treatment with the help of a horse." Occupational, physical and speech therapists use the horse as a modality to improve the posture, movement, neuro-motor function and sensory processing of people with disabilities. The movement of the horse, with traditional therapy intervention, influences muscle tone, encourages muscle action, and improves vestibular reactions, sensori-motor integration, and mid-line postural control. Contact North American Riding for the Handicapped Association, http://www.narha.org/ or Center for Equine Facilitated Therapy, http://www.nceft.org/, or Equine Assisted Growth and Learning Association, http://www.eagala.org/

Interactive Metronome

Professional: OT, SLP, PT, ATC, Educator, Psychiatrist, Neurologist, Psychologist, Chiropractic, Rehabilitation Professional or other Medical, and Mental Health Professional

Interactive metronome (IM) was developed in the early 1990s and is used to help children (and adults) with learning and developmental disorders, including auditory and sensory processing disorders, dyslexia and other learning disorders, autism spectrum disorders, attention deficit-hyperactivity disorder, Tourette's syndrome, stroke, traumatic brain injury, and more. IM is a neuro-motor assessment and treatment tool used in therapy to improve the neurological processes of motor planning and sequencing. Motor planning and sequencing are central to human activity. From The coordinated movements needed to walk, to the order of words in a sentence, planning and sequencing are critical to efficient human function. Interactive metronome improves motor planning and sequencing by using neuro-sensory and neuro-motor exercises developed to improve the brain's inherent ability to repair or remodel itself through a process called neuroplasticity. See http://www.interactivemetronome.com/.

Nutritional Therapy, Dietary Intervention

Professional: Nutritionist

Good nutrition is essential for development, efficient maintenance and functioning, optimum activity level, and resistance to infection and disease. A nutritionist can help a person with nutritional deficiencies achieve balance in carbohydrates, fats, protein, vitamins, minerals, and water. Contact: Autism Network for Dietary Intervention, http://www.autismndi.com/.

Perceptual Motor Therapy

Professional: Perceptual Motor Therapist

Perceptual motor therapy provides integrated movement experiences that remediate gross motor, fine motor, and visual perception problems. Activities, including sensory input techniques, stimulate left and right-brain communication to help the child interpret incoming information to the nervous system. Goals are to improve visual motor perception, develop more mature patterns of response to specific stimuli, improve motor skills and balance, and stimulate alternate routes to memory and sequencing for those children who do not respond to the methods taught in the conventional classroom. Contact: Kids Moving Co., http://www.kidsmovingco.com/.

Psychotherapy

Professional: Psychotherapy is sometimes appropriate, particularly if the child has behavior or self-image problems or is depressed. (Psychotherapy deals with the effects of SI disorder, but not the underlying causes.) Psychotherapies include behavioral therapy, to help the child deal with problematic symptoms and behaviors; family therapy to help the child, parents and siblings become a healthier unit; and play therapy, to promote the child's social-emotional development. See http://www.floortime.org/

Speech and Language Therapy

Professional: Speech / Language Pathologist (SLP)

Speech-language therapy includes activities designed to meet specific goals for the child. The child may need help with speech skills, such as pronouncing "L", "K", or "SH" sounds; monitoring the pitch of his voice; and strengthening oral-motor control in the muscles of his mouth. He may also benefit from activities designed to expand his language skills, such as retelling stories, conversing, and playing games to develop memory and vocabulary. As many children with SPD are picky eaters, therapy with a a speech pathologist trained in oral-motor and feeding issues may be very helpful. Indeed, when the child receives co-treatment simultaneously from and occupational therapist trained in this area, optimal benefits of getting in the mouth occur. Contact American Speech-Language-Hearing Association (ASHA), http://www.asha.org/.

Vision Therapy, or Vistion Training (VT)

Professional: Developmental (or Behavioral) Optometrist

Vision therapy, or optometric visual training, helps the person improve visual skills and can also prevent learning-related visual problems. Along with Lenses or prisms, VT helps the child integrate visual information with input from other senses, such as hearing, touching, and moving. A developmental optometrist provides sensory-motor and educational activities that strengthen eye-motor control, eye-hand coordination and depth perception, and help develop visual perception. Contact http://www.optometrists.org/; or Optometric Extension Program Foundation: http://www.oepf.org/, or Parents Active for Vision Education; http://www.pavevison.org/.

Autism Resources

I recently found out about this amazing organization, Music for Autism. I would explain it, but really, they do a better job. Here is a quote from their website.

"Autism is a complex developmental disorder that affects socialization and communication and causes repetitive and stereotyped behavior. These impairments
are also often associated with narrow interests that may lead to special abilities. Autism is a spectrum disorder that affects individuals to a varying degree. Experts estimate that autism occurs in 0.6 percent of the population and affects four times as many males as females.

"Autism was first reported in 1943 by Leo Kanner. In his classic paper, Kanner presented eleven case studies of children with autism and repeatedly mentioned musical abilities and musical interest in six of the children. Since then, researchers have systematically studied the musical processing abilities of individuals with autism, and have shown that while their language may be deficient, these individuals may process music in similar ways to typically developing individuals.

"The existence of a small number of musical savants with autism is yet another fascinating connection between autism and music.

"The goal of Music for Autism is to expose those with autism and their families to high quality, professionally performed music in an environment where individual
differences are celebrated and where no one will be embarrassed. Families are greatly challenged to find programming that is appropriate for their family members with autism who may exhibit behaviors that are unpredictable. Families say that Music for Autism's unique and interactive “autism specific” musical programming greatly enhances their quality of life. In addition, since all U.S. concerts are free for those with autism and their families, anyone affected by autism, irrespective of socioeconomic status, is able to experience Music for Autism's unique, interactive programming."

Go here to see a calendar of upcoming events in the U.S.

~~~

I also recently found out about Book for Children with Autism, a place to find and suggest books for children with autism, and to discuss autism and reading comprehension. There are some great suggestions and resources on that site as well!

p.s. How cute is this free printable from Today's Top 20! Just leave a comment on this post and she'll give you the pdf if you want this!

Do you have any resources you'd like to share? Please leave a comment!

Close to Home

April is Autism Awareness month.
Go here or here to find out about this month's events and how you can get involved.

Welcome to Beirut

by Susan F. Rzucidlo

(Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

Resources for Social Skills

Effective Social Skill classes are hard to come by. And, often times when you find a group therapy class, it might be out of reach if your insurance won't cover group activities. We've been at this for ten years now and have only been a part of two or three successful groups. We've found Group Social Skill therapy to be a bit of a catch 22. Either your child is in a group with kids just like them and they all struggle with interaction, or you are in a group that has more typical functioning kids and your child isn't experiencing true pressure to interact. What to do? What to do?

A lot of the time, what ends up happening, is a parent is left to their own devices. Instead of a clinical environment, a lot of interaction at home, church, school, and in non-therapy settings like the grocery store or dentist's office becomes your therapy gym. Almost any location or setting can be converted and used to practice therapy skills.


Jackson has just started another Social Skills Therapy group. Because Jackson is getting older and has more ability and confidence, we are hoping this group will be beneficial. Jackson's therapist gave us the following resources. We thought we'd pass them along. If you have other effective at home resources, please leave them in the comments. Other parents are sometimes our best resource.


1. A great website for lots of resources and ideas:
http://www.socialthinking.com/

2. "You are a Social Detective" by: Michelle Garcia Winner, Pamela Crooke, and Kelly Knopp
http://www.socialthinking.com/
(Fantastic book about social thinking written for kids and teens.)

3.Video modeling DVD's and other resources to help kids model appropriate skills and behavior.
http://www.modelmekids.com/

4. What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD (What to do Guides for Kids), Paperback (April 14, 2007) by: Dawn Huebner and Bonnie Matthews. (Amazon)

5. What to Do When You Worry Too Much: A Kid's Guide... by: Dawn Huebner. (Amazon).

Autism Through Siblings' Eyes

What is it like to have a sibling with autism?

Love is...

When you care about someone and want the best for them even if it means putting your own needs last. Love is selfless. Love is when you see the best in a person even if others don’t care enough to take a good look. It is understanding their every word, even though they haven’t verbally said a single thing. It is believing in them, when others think things are out of reach. It is appreciating them for who they are and not wanting them to be someone they are not.

These are just a few of the things that define love to me, what is the meaning of love to you?

Brain Development 101

I've received a lot of emails and questions regarding a post that I wrote earlier about a therapy program that I have on my daughter at home. For those who live in California, if you are interested, Donna Bateman will be coming in January to do a seminar. Attending this seminar would more clearly answer any questions you have. If you can come, it may be worth the $90 for you. At the seminar I attended, there were people from Sacramento who had driven up for the day. If you are interested in having your child evaluated, I would contact Donna to schedule that, or even just talk to her to get a feel for it all before even deciding if you want to go to the seminar. I'm just putting it out there for you all. Here is the flier that I received (a little altered to fit into a blog format here) from Patty Ezell (who is the contact person here in the Bay Area). Who knows? This could be what you're looking for...or you could think it's a load of hay. If you're on the fence about it, she comes to this area roughly every 6 months, and you can always call her or Patty...or me.

I hope you all had a wonderful holiday and are ready to get back into the swing of things again! :)

Is Your Child Struggling With . . .

Hypersensitivity

Autism/Asperger’s

Inattentiveness

ADD/ADHD

Developmental Delay

Social Struggles

Learning Difficulties

Inappropriate Behavior

Anxiety

Motor Skills

Poor Eye Contact

Impulsiveness

We Invite You to Attend

Brain Development 101

Saturday, January 29 9 am to 5 pm

Community Church, 3536 Monroe Street, Santa Clara, CA., 95051-1419

Course Objectives: By the end of the seminar, you will understand:

* how a child learns

* the root cause of most learning problems

* the seven main areas of brain function

* the order in which the brain learns all functions

* the significant milestones of brain development

* how to support and stimulate the healthy development of the brain

* what you can do TODAY if a child is not developing properly in some area

* the joy of understanding a child and participating in their development & learning

Donna Bateman, Neurodevelopment Specialist and mother of eight children, will lead you through the Integrative & Developmental Progression Chart. Learn about the aspects of a child’s physical, emotional, social, and neurological development and your critical role.

For information and registration contact Patty Ezell at 408-362-9780 or patrealee@gmail.com Please bring a lunch for a “working” break.

Cost is $90 per couple (normally $125) which includes materials.

Donna can be reached at http://www.parentswithpurpose.com/

A Walk in My Shoes

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent.."
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions. .

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with Autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you.

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.

by C. Waeltermann, 2007

Enjoying a Journey

Today's post is from Jennie, the newest member of the kidz krew! You can follow Jennie's story on her blog Enjoying a Journey. And here is her son's story....

First of all, I’m so happy to be a part of KIDZ. Raising a child with a disability can be overwhelming at times. I’ve only recently joined your community and already have felt a strong sense of strength and support. It is nice to know there are other moms and dads out there who share our family’s hopes and fears and also on occasion, our frustrations.

Hi, my name is Jennie. I’m a mother to four fabulous children, one of which has special needs. My beautiful boy, Jackson, is now ten years old. His name was chosen before birth. I always loved the movie, Steel Magnolia’s – a little cheesy, I know. But, it spoke to me. The movie conveyed a sense of sisterhood, family, trials, and endurance. It taught me that with a support system and sometimes a good cry, you can do anything. Now, over twenty years later, it seems a little more than the name of Shelby’s fiancé has carried over into my life.

Five months into my second pregnancy and through various ultra sounds, we were told Jackson had brain structure anomalies. Our fears were calmed when the prognosis was slight developmental delay. Our baby may just be slow to learn to walk. Oh, if that would have only been true, life would have been a lot simpler; less adventurous, but certainly more simple.

Instead we started our specialist appointments on day two after our hospital release. Doctor visits and therapy have continued ever since. As we searched for answers and solutions, delayed development, therapy, blood work, every type of specialist available, communication disorder, apraxia, failure to thrive, surgeries, pervasive development disorder, autism spectrum, and genetic testing became regular parts of our vocabulary, schedule and life. However patience, diligence, hard work, lots of faith, prayer and hope, seemed to have been the key for some relief, although, answers still would not be ours for another seven years.

In 2006, a new genetic test was developed. CGH Microarray changed our lives. This new technology was able to identify deletions or duplications that had taken place in DNA during development. Prior to this technology, only certain known syndromes could be tested for through blood work; thus, the reason for our unanswered diagnosis. Who would have thought to test for a small piece of DNA on the long arm of chromosome seven? No one.

The spring of 2007 set us on a new course when a correct diagnosis was finally made. Even though it was hard to hear that yes, a problem had been identified, it was also such a blessing and a relief to finally have a name for Jackson’s delays. It wasn’t a matter of bad parenting or a stubborn child. There was a reason why our child was unable to speak, was consistently fussy and hard to handle, a reason he struggled to develop relationships with others, and had difficulty learning to run, play and progress like his older sister. The name for our struggle was 7q11.23 Duplication. We would learn Jackson was one of only about 11 in the world known to have this disorder. I immediately tried to find others who knew what we were going through and who could identify with the challenges in our life.

Although we have a large family who loves and cares for us, we felt somewhat isolated. We weren’t sure where we fit into the world of special needs and we were often teaching doctors and therapists about the disorder. After learning all we could about 7q Dupe through our geneticist and through the limited information available online, a friend of mine pointed us to an organization in the UK called, UNIQUE. They specialize in providing support and information for individuals and families who have rare chromosome disabilities. Through the UNIQUE organization, I found two other mothers in the United States whose children share the 7q Duplication. I immediately searched them out.

Three years later, our efforts of supporting one another have led to the formation of a new non-profit organization called, Duplication Cares. Not only do we support the families and individuals with 7q Dupe, but steps are being taken to educate the medical community about the differences between the duplication and Autism. As with so many other syndromes, 7q Duplication mirrors autism and a large percentage of the children diagnosed with the duplication have also received an autism spectrum diagnosis. We now know there is treatment to help our children with the duplication. There is hope. Through hard work, progress can be made.

Our numbers have grown. Our small band of warriors is approaching 50 individuals in the United States. Our kids struggle with speech, social interactions, anxiety, behavior, and are developmentally delayed. Jackson also has a thin corpus callosum and enlarged brain ventricles which contribute to his delay.

At various times in our life, we’ve felt Jackson’s syndrome has been invisible to the outside world. This can be a blessing or a curse. Yes, at first glance, Jackson may seem like a shy, typical, ten year old boy. People have even commented about how lucky we are and that things could obviously be more severe. While that is certainly true, and we are immensely grateful for Jackson’s cognitive and physical abilities, we also have passed through the stages of grief and frustration every parent of a special needs child experiences.

Upon further interaction with Jackson, one would notice his lack of interest in carrying on a conversation. When “hard” questions like “What do you like to do?” are asked, Jackson becomes easily agitated. You may think it odd to find such a physically mature boy still clinging to his mom when he crosses a street, anxiety ridden that a car might approach. It will be concerning to see him have a meltdown when he didn’t get the first shower of the night or secure the middle bar stool at meal times. It will be easy to identify when medication in no longer effective and when ADHD, anxiety, and ODD take over. Yes, on the outside, our boy is not the typical, special needs child, but then again…. What is typical?

Our journey may be different from many of yours. However, I know a few things to be true. We all love our children and want desperately for them to be happy. We want them to be able to grow and mature and develop to their full capacity. We each have different struggles but I also know we each need support. Being a parent of a special needs child is often daunting; the therapy, the appointments, the procedures, the melt downs, the setbacks, and of course, the red tape. However, we also know the joys. We’ve met kindred souls who might not have otherwise crossed our paths. We are giddy with joy when our child speaks after years of therapy and silence. We celebrate each milestone and every acquired ability. And, we truly do know what it means to enjoy the journey.

Light it up Blue

April is Autism Awareness Month.


Things you can do to Light It Up Blue

* Wear your Autism Speaks puzzle piece pin every day throughout the month of April, and tell people about autism if they ask about it.
* Change your Facebook profile picture to the Light It Up Blue logo and tag at least 10 of your friends.
* Post on your blog about how you are “lighting it up blue” to raise autism awareness.
* Add the Light It Up Blue logo to your e-mail signature … and type your e-mails in blue!
* On April 2 wear blue clothing and ask your co-workers, schools and friends to wear blue too. Take pictures and add them to our Flickr gallery.
* Bake puzzle piece shaped cookies and frost them with blue icing, then bring them to your school, work or place of worship to raise autism awareness.

The World Needs All Kinds of Minds