Team J - Positive Change Through Teamwork

It's been a little over a year since we received the news J was "on The Spectrum". The good news: he is on the high functioning end of The Spectrum and we're working a plan. The bad news: it was an extremely frustrating and long journey to reach this point. Normally Autistism Spectrum Disorder (ASD) is diagnosed around ages 3 to 5; J was 8. It is estimated to effect 1 in nearly every 110 people.

Autism is defined by the National Institute for Child Health and Human Development as:

Autism is a complex developmental disability that causes problems with social interaction and communication. Symptoms usually start before age three and can cause delays or problems in many different skills that develop from infancy to adulthood.

J's combination of signs and symptoms tend to throw everyone for a loop. Short term memory deficit. Expressive language disorder. Slow motor skills. Extreme mood swings. Inability to read other's emotions from verbal and visual ques.

You're eyes are getting glassy from information overload right? So were ours.

Simply stated:

• J has a hard time remembering new information (reading, phonegrams, math facts, stories, rules of a game etc).
• He could not properly express his emotions with a solid verbal base. 
• His motor skills are a bit slower than his peers.  
• He has trouble reading people's expressions and gestures as many of us do in normal day to day conversation.  

An example of how this effects his daily life: J does not remember the rules of a PE ball game. He does not have the dexterity to keep up with his friends during the game. He lacks the ability to read his friend's facial and verbal gestures. This results in extreme mood swings.

One year later, I have a MUCH better understanding of what all this means. Better yet, I have a better ability to help J learn the skills he needs to be an independent person.

I have Team J to thank.

Team J consists of me and hubster plus his team of school teachers and specialists. In total, J works with about 10 different people on a weekly basis. Everyone provides a different piece to J's puzzle. There are teachers and paras who work solely on academics. The Occupational Therapist helps improve his motor skills. The Autism Specialist works with him to develop his social skills. His Speech and Language Therapist help with vocabulary and language skills.

J is not quite at par with his classmate's academics, but he's getting there. We anticipate his Occupational Therapy will end with the close of the school year. His progress in this area has been monumental. I credit the weekly therapy sessions plus the twice weekly Taekwondo lessons. He will always have to work hard on social and language skills but again, he has made great leaps. His confidence builds with each new accomplishment.

Our home life has drastically improved too. His shocking outburst are rarely a problem. He smiles more and maintains eye contact more than before. J gets along with everyone better and is able to communicate his emotions, wants, and needs more clearly. He's made great strides this year but there's still more hard work ahead.

Who's on your child's team?

J's team has worked closely to ensure J's achievements. I hope to share some strategies with you in the month of April - Autism Awareness Month. Many not only apply to Autistic children but all children at varying development stages. Until then, who's on your child's team?

Through the Eyes of a Child

Earlier this year I gave J-Man my old HP 4mp digital camera when I upgraded to my Kodak 8mp digital camera. It takes great pictures, I just wanted something with a little more umph! He also got my old memory card since I got a 2mg memory card with the camera. I downloaded the pictures off his memory card last week. Here's the world through the eyes of J-Man, an 8 year old with high functioning Autism Spectrum Disorder.

Cute pictures of Wild Man, pictures of his toys

Funny pictures of my butt while we're waiting at one of Rick's doctor's appointments, images of a field covered in winter snow,

photos of our closet and Uncle Sid.

Pictures of what he watches on TV (iCarly on Nickelodeon), a pretty good one of me and finally one of his sister's pink lamp!

Yes, there were lots and lots of blury and EXTREME closeup pictures of Lord only knows but these surprised me the most. (A) The quality wasn't too bad (for an 8 year old) and (B) the subject of the image was uniquely captured!

Want to know what the world look like through your child's eyes? Give them a camera for a week!

Conquering Fears in an ASD Son

This week marked the beginning of swimming lessons for my oldest son. J-Man's 8 years old and barely floats. He loves lake activities: fishing, boating, etc. but HATES (yes, I mean HATES) the water! Makes great sense right? {she says sarcastically} He doesn't want anything to do with swimming pools, beaches, or any other swimming activities. My biggest fear is one of the kids falling in the lake when we're fishing so teaching them to swim is a priority.

J-Man has had a fear of water for several years. Ironically enough, it was during free play after a swim class a few years ago, he nearly drowned. He and some other kids from class were playing near a rope divider. The rope was at his waist. He was teetering back and forth over it being careful not to go too far to flip over the rope. (He didn't like water on his face) He somehow got into a position with his head under water, his feet partially out of water with the rope still at his waist. He couldn't flip himself over the rope to come up for air and the lifeguards didn't seem to notice him in trouble. After watching his body squirm for what felt like a lifetime, I dropped my video camera and trudged into the water for a quick rescue. After a little coughing and sputtering he was fine. He wasn't under water long enough to need resuscitation or anything of the like but it was still very scary. Needless to say, it was an emotional event for both of us. Ever since then, he's had a great fear of swimming pools.

Last year he wouldn't get near the water. I literally couldn't drag him near the pool house so forget getting INTO the water. This year however has been slightly better. The first day of class he sat on the side of the pool with feet dangling but wouldn't do anything else. This alone took lots of coaxing. The following day was a TREMENDOUS improvement. He got into the water, did as the instructors asked but I had to be nearby and watch EVERYTHING. By the end of the first week, he was in the water and even trying to go under and jumping in the shallow end. What a difference a week makes.

Here's a few of the strategies I used to turn J-Man into a willing swimming lesson participant.

1. Talk about it A LOT! We've talked about swimming lessons since before the pool opened this summer. We talk about it during dinner, on the way to Tae Kwon Do, while riding bikes, anytime he's in a chatty mood. I try not to make into a big ordeal so he's not overwhelmed but at the same time is fully aware of what to expect.
   
2. Mark the calendar. As soon as I received the dates for his lessons, the calendar has been marked so J-Man has a visual time line. This helps him prepare himself with a visual countdown to the big day.
   
3. Bargain, Bargain, Bargain. I want him to actively and willingly participate in swimming lessons so it's fair to give him something he wants in return. We've negotiated for small daily treats costing less than $1.00 as well as a weekly treat (movie rental) and a slightly bigger treat for when he completes the 2 week course (new video game). I repeat our bargain many times throughout the week-not just on the way to class.
   
4. Boost his confidence. I try to use ego boosting phrases whenever he starts to complain or say he's afraid of drowning. "You're so brave when you try to do something that scares you" "I'm afraid of drowning too but that's why I learned to swim-so I could be smart in the water" "You're doing a great job with everything so far, so I'm sure you'll be great at this if you just TRY" "All I ask is for you to TRY what you teacher asks. Your teacher will help you and with practice you'll get even better." "Nobody does it perfect the first time they try anything so keep up the great work."
5. Express my gratitude and pride. I tell him how proud of him I am after each class and throughout the rest of the day. During class, I'll give him thumbs up or clap when he looks over at me. I always tell him thank you for being cooperative.

J-Man responds very well to these strategies. I feel like I've tried every trick in the book to help him over come his fears. I've learned it's easier to work with your situation than against it.

What's your method to getting cooperation from an unwilling participant?

Speak Now For Kids

Did you know 8.8 MILLION children in the United States have NO health care coverage?

The economic recession, loss of jobs and reduced wages have caused a ripple effect across the health care platform. Companies are increasing employee out of pocket benefits to help balance their books. Private insurance rates are going up so parents have more difficulties than ever before securing reasonably priced health benefits for their kids. Rising job losses are creating an increased dependence on state programs, causing even more strain on government funded programs like Medicaid. For many, the only option is to go without insurance and pray you kids don't get sick.

Most parents know prevention is the key. Some effects of inadequate access to medical care are:

• Children are at higher risk for severe illnesses and increased death rates
• Kids miss more school due to illness
• Parents miss more work having to care for their sick children
• Chronic problems create truancy or possible job loss situations
• Costs associated with doctor's visits, lab tests and medications skyrocket straining the family's budget even more
  

Even though we're reeling from an epidemic level recession, we're still one of the richest countries in the world yet we still have millions of children left without access to health care. This is an atrocity we can remedy.

Speak Now For Kids is a grassroots organization working to bring health care reform for our children to action. The goal is to have Congress join together with President Obama create health care coverage for EVERY AMERICAN CHILD. Even with state programs like Medicaid helping lower income families obtain the coverage they desperately need, the platform isn't even. Benefits, eligibility, and requirements vary from state to state. Help spread the word and Speak Now For Kids to help level the field of health care!

Here's how:

1. Learn Now-Learn about the national campaign
   
2. Speak Now-Get the facts and tell Congress what you think about health care reform!
3. Share Now-Spread the word via Twitter or Facebook.
   

Join the Twitter Party tomorrow night at 9pm EST #speaknowforkids to learn more about the campaign and how you can be a child's health care champion!

April is Autism Awareness Month

April is National Autism Awareness Month. Throughout the entire month I will either post or link up to other posts to help acquaint you with Autism: what it is, who is effected, and how people cope. Today we'll start with some of the basics.

Autism comes in many shapes, sizes, and manifests in a thousand different ways. For some, it can be crippling thrusting them into a world unknown to the rest of us. For others, it can be mildly intrusive requiring specialized techniques to cope with social or dietary deficiencies. Then there's all those who fall in between. No two people with Autism are alike. This alone is what makes diagnosing Autism extremely difficult.

Although no single definitive cause has been discovered, it is widely accepted that Autism is caused by abnormalities in the brain. There's much controversy surrounding all the theories that may cause the brain abnormality but scientists and researchers are working diligently to uncover the root cause of this disability in order to discover a cure. In the meantime, those afflicted with Autism and their families are left to work with doctors, care givers, and teachers to devise therapies and coping techniques to improve their lifestyle.

This issue is especially important to me since we live with it each and every day. My son, J-Man, is eight years old and is on the spectrum. I've written about this before and will dive into it a little deeper throughout the month.

All throughout the month of April, Blissfully Domestic's Special Needs channel will be featuring articles and library giveaways in recognition of Autism Awareness Month. There are also many sites to get more information about Autism and Autism Spectrum Disorder. Autism Society of America is a wonderfully resourceful site who is also running an online art exhibit and plans an annual summer conference to raise money and awareness. Autism Speaks is another great resource full of helpful information.

There will be a special Twitter Party April 1st 9pm EST using #mmk to discuss Autism with a panel of four expert panelist. Sitewarming Parties and Model Me Kids are co-hosting the party offering up some great door prizes but you must RSVP to be eligible. This is the first of several Twitter Parties planned for this special month.

March is Disabilty Awareness Month

In addition to Daylight Savings and Saint Patrick's Day, March is also Disability Awareness Month. Disabilities come in all sizes, shapes, and colors. Some are physical while others fall in to the sensory, developmental, or mental classifications. Disabilities are non discriminatory. They can hit anyone at any age of any race, creed, religion or sexual orientation.

Twittermoms and CVS are promoting tolerance and inclusion of the disabled among children. They've asked mom bloggers to share how we teach our children these qualities. As a parent of a child with a special 'ability', this issue is more important to me than ever before. I'm proud to say, J-Man hasn't experienced any intolerance since receiving his ASD classification. Children are loving and caring by nature and as long as those traits are encouraged, teaching them tolerance and inclusion will also come naturally.

We don't sit down for a formal discussion about this. My kids don't respond well to this method and it creates an awkward situation. We approach the attitude of inclusion and tolerance much like bullying, drugs, alcohol, stealing, and everything in between. When there's an opportunity, we seize it. Then I keep it simple, short and age appropriate. Opportunities can be presented in multitude of places.

• Book characters
• Cartoons or other TV shows
• Movies
• Magazine ads
• Pictures
• Commercials
• Injured Animals (especially the disfigured animals with missing limbs)
  
• Shopping Mall
• Playground
• Library

Here's a few ideas to help you discuss tolerance and inclusion once you've found your opportunity.

• Keep it short. Kids have short attentions spans. Smaller children lack it and the bigger one's just want to do something else with someone else.
• Keep it age appropriate. Use simple small words your kids completely understand. Don't assume they know what your words mean. Even everyday words you use they might not have a full understanding of the meaning. I discovered this a few years back with J-man. If it's not a word they use regularly then ask them if they know what that word means and have them tell you what they think it means! You'd be surprised at what they come up with!
• Use real life scenerios if possible. If you have a friend, classmate, neighbor, or relative that's disabled, involve them in your discussion. Was there someone in a wheelchair at the supermarket or doctor's office? Did you see a cat with a missing tail or a three legged dog at the park? Kids can relate much better when they can put faces with the situation.
  
• Let them ask questions. Children are naturally inquisitive. Many people are glad to answer a child's questions about their disability. If you feel embarrased by their questions or feel they're being too intrusive then perhaps you can take the lead by asking one or two questions on your child's behalf then politely move onto the next topic. Afterwards you can talk to your little one about HOW to ask questions without hurting anyones feelings or making anyone feel uncomfortable. If you have one of those kids with gazillions of never-ending questions, you might tell them they can only ask two, three or four of their most important questions so they don't tire out the other person.
• Go online together. The internet is a great place to learn about specific disabilities and the different things people with various disabilities can do!
  
• Don't skip an opportunity. You never know how long it will be before another one comes along.
• Don't make a big deal out of it. The trick is for you as a parent to be comfortable with the topic before taking it to your kids. They'll see if you're not and will pick up on your subconscious cues.
  

Children are empathetic and curious about their surroundings. They have a great capacity for tolerance, kindness, and love. It's up to us to nurture those traits instead of repressing them. As long as we teach love instead of hate, children will naturally find it easy to talk and play with others with any disability.

CVS has a special charitable division called CVS Caremark All Kids Can who's purpose it to help make life easier for children with disabilities. They partner with organizations like the Easter Seals, VSArts, Meeting Street, and National Center for Boundless Playgrounds. You can learn more about their program here.

The Gifted One

My oldest boy IS gifted. Joey is funny and has one heck of an imagination. He tells the most wonderfully entertaining stories and I love him for it! It has proven to be a great tool for him in making friends and relating to others. I'm not sure if I've mentioned this before but Joey also has some learning difficulties. He's in the second grade & will be 8 in a few weeks. We're working about 8 months behind everyone else in his class. Delayed speech, delayed motor skills, unfocused, frustrated, loner, mumbles, quiet, distractible, avoids eye contact, reserved, creature of habit, noise sensitive, loving, imaginative, affectionate , funny, inventive, creative, insightful, & happy are all words teachers & administrators have used to describe him over the years. We've been through lots of academic and some medical testing, Individual Education Plans (IEP), parent & school evaluations, etc. All in an effort to figure out how Joey learns so we can be better equipped to help him.

Thursday, Joey was officially classified on the extremely high functional end of Autism Spectrum Disorder (ASD). His case is no where near severe. Joey does all the things a typical boy does but simply at a different level. I suppose his motor skills are about an early 1st grade level, academics-late year 1st grade, social skills remind me of a shy Kindergartner or early 1st grader. He doesn't experience seizures, medical symptoms or any "Rain Man"-like behaviors which made his case especially difficult to pinpoint. Thankfully, he's not ridiculed, bullied or made fun of and there are several friends (his age and older) who look out for him much like a big brother!

It's hard to describe the roller coaster ride of trying to help & teach someone who can't "get it" no matter what each of you do. If you haven't had to go through it yourself or know someone who has, I don't know you can fully appreciate how traumatic it is for EVERYONE involved-teachers, family & friends. I admit until Thursday, I HATED going to the school's evaluation meetings. (The meetings are used to discuss the observations and testing scores with the parents so an IEP can be put together. Usually there's a panel of people at the meetings which can include the parents, primary teacher, principal, special teachers (music, gym, library, etc), psychologist, counselor, speech/language, Occupational Therapist, Autism Specialist, Title 1, para-professionals, teacher's assistants, bus driver, etc.-anyone who interacts with the child in question.) By the end of the one hour or sometimes longer meetings, facing anywhere from 4 to 8 school staff members, it feels like a "Dump on My Kid" contest (which is why I NEVER let Joey sit in on those meetings).

I expected more of the same Thursday but, was pleasantly surprised. There were 9 other people at that meeting. We discussed LOTS of information (too much to share in this post) but the bottom line is we finally have a clearer path to help Joey not only academically and socially. This is all GOOD news. They also did a great job in bringing attention to his strengths which made me feel great! They love his funny stories and find him incredibly creative and inventive. (We all are excited to see how he may capitalize on these gifts in the future.) For now we're taking it day by day, finding the silver lining through whatever clouds may appear. Speaking of which, I must share with you the story they shared with me in turn, giving me hope for his future! (One of the silver linings I was talking about!)

Joey to Ms Nelson during a study break: Want to know something Ms Nelson?

Ms Nelson: What is it Joey?

Joey: Boys are smarter than girls!

Ms Nelson: Not always, girls can be smarter than boys!

Joey: NOPE! Boys ARE smarter than girls!

Ms Nelson: Joey, boys are smart but so are girls. Sometimes they're even smarter than boys.

Joey: Well, I am smart! Want to know how I know?

Ms Nelson: Sure, Joey. How do you know your smart?

Joey: Cause I got a big head!!!! (he says with a big Cheshire grin!)

Does this look like a big head to you?????