This article from a mother with a special needs child is especially touching.  The worry, the fear, and the hope that home schooling might help spare the child ridicule and help him develop to his full potential is palpable.

Since he was very young, there has always been something about the way my Baby Bear lines up his cars, counts his blocks and just cannot step away from a task that has bothered me. I recognized the signs. I grew up with it. But I pushed it out of my mind because I did not want it to be there. It is something I am powerless before. And it affects my little boy.

….

When he began licking his hands, somehow my mental defenses were penetrated. This was too far outside the range of “normal” to pass off as a unique quirk. The licking became almost constant. First the right hand, then the left. Touch something. Lick. Touch something. Lick. Yes, this is what I grew up with. My brother, upon passing through a threshold would drop to the ground and lick the carpet. He licked the walls. He touched everything. First the right hand. Then the left.

….

That when my little boy looks forward to a doctor’s appointment because he is hoping the doctor can help him stop, I would move heaven and earth to make that happen. But I can’t.

I don’t really know what to say. This is just heart wrenching. When you discover that something may be wrong with your child; you hope it is just a quirk. Maybe they will grow out of it. But, what if it gets worse. How will it affect them as they grow up. Will they be made fun of? Will they be able to work?

If you see a problem, something that raises a red flag, talk to your family and talk your doctor.

via Principled Discovery » What I learned from my son.

I recently came upon an article asking the question why doesn’t the Department of Veterans Affairs provide money for service dogs?  There is no question about the benefits provided to disabled individuals by service animals.

… while the VA talks about “providing” dogs, the only thing they’ve really been trying to decide is whether to pay the same monthly stipend to disabled veterans with a service dog that they’ve been paying to those with guide dogs for many years.  That’s it – there’s been no intent (and that I’m aware of there still isn’t) to “pay for service dogs” the way some describe it, i.e., fund organizations who train assistance dogs.

There was a January 2008 memo signed by the former Secretary which summarized their position. …  I’ve read the memo, but I’ve got something even better for you – the man behind the memo describing the VA thinking about service dogs in his own words a few months later.

Fred Downs, the VA’s Chief Consultant, Prosthetics and Sensory Aids did an hour-long interview with Brian Lamb for C-SPAN on June 5th, 2008, during which he discussed many things, including his handling of the service dog issue.  You can watch the video below – skip to the 51:20 mark which is where the pertinent section starts.

Click the link: Al Brittain to read the entire article and watch the linked video.

I recently wrote about the amazing difference a service dog can make for a child with autism.

Colleen Bell contacted me about getting the word out about helping their autistic son, Jude, receive a service dog.

Jude is an amazing 6-year-old boy who loves to laugh and to make other’s laugh.  He’s smart, handsome, funny, loving, lovable, clever, and honest.  He tries harder than most anyone you’ll meet.  He makes us proud every single day. He also has Autism.  

Jude has qualified for an Autism Assistance dog from 4 Paws for Ability, Inc., a 501c3 nonprofit organization based in Xenia, Ohio, which provides service dogs to families and children that struggle with life’s daily challenges and who would otherwise be turned away by many other agencies.

There are many ways a service dog would help Jude:

• In potentially dangerous situations, Jude will be tethered to the dog to prevent him from running away. 
• The dog will assist Jude with therapy, provide sensory input, interrupt undesired behaviors, and be a comforting and calming companion. 
• It would also act as a “social magnet,” making it easier for other children to approach Jude. In addition, the dog will be trained in search and rescue, to track and find him if and when he would run away. 
• Mostly, it would be a huge source of relief for Jude’s family, empowering them to lead a fuller, happier life.

While Jude has been accepted to receive a service dog, his family needs to raise $13,000 (which is only a small part of the cost of training).  I have contributed.  Don’t click away, step up and make a difference in a child’s life today.

I thought this was a great story about a Greenville, South Carolina, special education student starting a coffee shop in his school:

Jarvis Rogers said he saw the need for the coffee shop and, in just two weeks, built the Ground Floor. … Rogers is in Special Ed, Greenville High School’s occupational diploma program. 

The full-service Ground Floor shop is the most popular spot in the Greenville High School cafeteria.

“The corporate sponsor is Liquid Highway, who donated the cash registers and all of the coffee-making equipment,” Beth Brotherton said. “And, get this, in their first week in business, this was the highest-grossing Liquid Highway location in Greenville.”

The part I really love is that Jarvis Rogers, and the other students, researched the business, developed a business plan, got a sponsor. These students really did the work to get this business off the ground (no pun intended). 

I love entrepreneurs!

Greenville Students Open Coffee Shop In School – Greenville News Story – WYFF Greenville.

I recently read this story from Dr. Mark Mostert about a major airline’s inability to deal appropriately with a person with severe hearing loss.  If the Fail Blog had a corporate failure section, this would be on it.

…my wife, Deborah, has a severe hearing impairment – both ears. Deborah wears state-of-the-art hearing aids that are only somewhat helpful.

Last week my wife turned up at the United counter in Norfolk, Virginia, to check in for her flight.

United Airlines employee: Says here you have a disability. Do you need assistance?

Deb: Yes, I’m deaf.

Puzzled silence.

United Airlines employee (somewhat sullenly): Do you need assistance?

Deb: Yes, I have a severe hearing impairment.

United Airlines employee (now a little irritated): Do you need assistance?

Deb (sighing): Yes, it’s very difficult for me to hear anything. . .

United Airlines employee (obviously ready to move on): Do you need a wheelchair?

I find this exchange interesting because it does not appear to start with malice on the part of the UA employee. I can only imagine that the UA employee could not conceive that a person who was conversing with him and responding to his questions, could label themselves as “deaf.”

Is this ignorance?  Yes. But, not malice. The cure for ignorance is more information, which Deborah provides:

I have a severe hearing impairment.  It is very difficult to hear anything.

But instead of the expected the “a-ha” moment, the employee offers her a wheelchair. FAIL!   

I do not expect everyone to be sensitive to every disability. People are just not very good at putting themselves in someone else’s shoes.  But, when someone takes the time to explain their needs to you, take the time to listen and try to help.

Via Disability Matters.

Scott Mackler was a husband, father and successful neuroscientist when he received perhaps the worst news imaginable. At the age of 40, he could run a marathon in three and a half hours, but it was about that time he discovered he had ALS, Lou Gehrig’s disease.

Today, Scott Mackler’s mind is as sharp as ever, but his body has failed. Doctors call it “locked in” syndrome. Scott and his wife Lynn learned to communicate with about the only thing he has left, eye movement.To signal “yes,” Lynn says Scott looks at her; to signal “no,” he looks away.

But recently Scott found a new voice. “Can everyone hear the PC?”

You have to see it!

Having a happy Halloween may be especially difficult if you have a special needs child. K. Sayford-Wilson writes about the problems her child has.

Our youngest child has sensory integration problems with developmental delays and also a speech disorder called developmental apraxia. These challenges limit her ability to process information, so the way in which she understands information is different from the way other children would understand information. Telling a typical child that a scary, angry-looking skeleton half-buried in the ground is only plastic might work. Telling a special needs child with sensory integration problems and a speech disorder that it is plastic and will not hurt her – may not make any sense to her. The child may not be able to handle the sensory overload and may just run away (ours did).

…

On Halloween, we avoided all houses with any scary decorations or music – and avoided all people in scary costumes. When our child started whining about “go home,” we honored her request.

If you are thinking of putting up a scary display, please remember that your scary Halloween display can be extra scary for young kids or children with special needs.  

I do not want to tell anyone not to have a fun Halloween, including having a scary Halloween.  There are ways to balance family friendly and scary.

Several of my neighbors handle this by having a “haunted” garage or back yard.  Younger children can trick-or-treat at the front door while older kids can opt-in for the scarier sights and sounds.  

Halloween “tricky” for Phila mom with special needs child.

Here is a story of a doctor living and working in Australia to help with a shortage of doctors, denied permanent residency because his son has down syndrome. 

Bernhard Moeller came to Australia with his family two years ago to help fill a doctor shortage in a rural area of Victoria state.

His temporary work visa is valid until 2010, but his application for permanent residency was rejected this week. The immigration department said Moellers 13-year-old son, Lukas, “did not meet the health requirement.”

“A medical officer of the Commonwealth assessed that his sons existing medical condition was likely to result in a significant and ongoing cost to the Australian community,” a departmental spokesman said in a statement issued Thursday by the Department of Immigration and Citizenship.

I find the story amazing. The country is happy to have the doctor there to treated patients, and to continue living there, along with his son with down syndrome, through at least 2010.

But, they refuse to let the father and son stay in Australia on a permanent basis because of the son’s medical condition.  What do you think?

AFRA_Newshawk : Message: Residency Denied to Disabled Boy – Down Syndrome .

I recently came across this letter on the Letters to the Next President site:

I would like to know about changes in social security-specifically disability. … I worked as an LPN for over 30 years. I started having back, neck and arthritic probelems, and after several years of pain I applie for social security disability. The process was long. It took approximately 2 years from the time I applied untill I was finally approved, and then receive a paycheck. If it had not been for my family helping me financially, I don’t know what I would have done. Isn’t there any way to speed up this process for other people who may desperately need money?

I wish I could say this was the exception, but as most of us know, long wait times are unfortunately the norm in Social Security cases.  

Send your Social Security stories to the president, or leave them in the comments.

Chica, of Conversations in My Head, has a great site discussing her ups and downs (no pun intended) dealing with bi-polar disorder.

My symptoms are constant and unpredictable. There are stretches of time where I find myself uninterested in hobbies, the kids, days where I want to sleep all day and days when I can’t sleep. There are days when I’m on top of the world, where I organize and reorganize the cabinets in my home, only to crash into an irritable and anxiety ridden state. Bipolar affects the way I live and how I breathe. Unlike regular mood swings, my mood swings hit heaven or hell. It affects my activity level, my judgment, and behavior.

Read more here.

My wife feels disabled. She used to teach junior high school Spanish full time for over $60,000 per year. She can no longer work as a full-time teacher, because the stress triggers mania. Believe me, she tried several times to return to teaching, and each time she experienced a serious breakdown.

She did receive some disability payments from the Social Security Administration for several months when she was completely unable to work. Now she’s working as a teaching assistant earning about $15,000 per year.

She can’t do the job she wants to do and was trained to do. She no longer has the same earning potential. That makes her feel disabled, but that’s not how the Social Security Administration sees it.

The article goes through the Social Security disability analysis and is a great review of how disability cases are evaluated.

photo credit: s-t-r-a-n-g-e

Touching video about what it is like to live with social anxiety / social phobia.