I was in shock for a moment, and my weak response to him was “Of all the words I could use to describe Ashley, sad is not one of them.” He soon left my office, but I spent most of the evening and half the night thinking about his comment – that’s probably because I have never really thought about what Ashley will not be able to do, but rather, I celebrate everything she does do, and it’s a very long list.

So, in an effort to make sense of my feelings about my co-worker’s comment, I started thinking about the things in my life that are important, how I am able to do them, and contrasted those things with Ashley’s abilities. My conclusions were interesting.

First, there are not many things I can’t do, and the list of things I can’t do doesn’t really bother me. For example, I can’t change the oil in my car – I can’t go on rollercoasters because they scare me to death – I can’t peacefully coexist with camel crickets in my house – I can’t really do a good job of urinating while standing – I can’t sleep during a car trip – I can’t square dance – I can’t give birth to a litter of kittens – I can’t eat brussel sprouts – I can’t speak Spanish or French or German – I can’t tell a joke without messing it up – I can’t do a cartwheel, and I can’t wear socks while sleeping no matter how cold my feet are. I’m sure there are many other things I can’t do, but overall, I don’t feel my good life is jeopardized by that list of things I can’t do.

So how about Ashley? Well, she can do a lot of the same things I do. She can do her laundry – she can clean house – she can cook – she loves rollercoasters – she can love and express that love quite well – she can be quite opinionated and can argue extremely well – she understands the concept of exchanging money for goods and services – she can bowl – she can roll her tongue into a “V” (I cannot) – she can throw a ball really fast over her head – she can do a marvelous Donald Duck imitation – she can communicate when she is sick or tired or hungry – she can give herself her own medications through her G-tube – she knows which plants are poisonous and which aren’t – she can read and use a computer – she can operate the TV remote control and she can hide it so her brother can’t find it to change the channel from Sponge Bob Square Pants – she can tell the cats to stay off the furniture – and she can eat a pound of spinach leaves.

Actually, I can’t think of anything she can’t do. If she wants to date and marry, she’ll be able to. She can have children if she wants. She will be a very good caretaker for a child, and hopefully she will help care for me when I am old(er).

Oh yes, I did think of something she won’t be able to do – she won’t be able to drive unless there are some major technological changes in transportation. She has epilepsy and in our state that means no driver’s license – well, that and the fact that she is blind. Her brother, Chip, said that just means she will have to live in New York City because nobody there drives. And she can sure raise her arm and whistle for a cab.

Now I wonder just what my co-worker thought Ashley would not be able to do in her life because I can’t come up with much.

Oh, and if you are wondering what disabilities Ashley is tagged with, here is the list:

• Fetal alcohol syndrome
• Deafblindness (profound hearing loss in right ear, severe loss in left ear, totally blind in left eye, 20/2000 in right eye)
• ADHD
• Autism spectrum disorder
• Epilepsy
• Juvenile xanthogranulomas (a rare disorder that causes tumors to form – she currently has three brain tumors, and has had two in the past)
• G-tube for past feeding issues, now used solely for medications

Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.

Ashley had a dentist appointment this morning. The dentist is one she has seen for several years, and one who touts himself as a dentist for children with special needs. Until today, Dr. Karl had done an adequate job of caring for Ashley’s teeth even though his manner was a little brusque and rushed. But today things did not go so well. In fact, they went horribly wrong.

And I will share this story with as many people as I possibly can.

Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.

But as Matthew got older, he got bigger and more aggressive, and could be really scary. Visits from the police became more frequent. One day when he was 15, a minor disagreement after school escalated into a full blown meltdown, and Matthew day he took off on his brother’s skateboard in a rage. I jumped in my car to search for him and found him in the parking lot of our neighborhood school surrounded by three police cars; lights blazing. It was a good thing that I got there when I did. These officers did not know Matthew and they didn’t understand his behavior and I was too much of a wreck to explain it rationally.

The next day, I put together a flyer with Matthew’s picture that explained autism, how it affected Matthew in particular, and circulated it around my neighborhood. I dropped off a stack at the police station, too, and while I thought the flyer was informative, it came across to many as a warning: “In case you see this boy flipping out, be careful!”

I did a little research and found out about Dennis Debbaudt, a professional investigator and law enforcement trainer who was the first to address the interactions between law enforcement and people with autism in his 1994 report Avoiding Unfortunate Situations.

He was also the father of a young man who has autism. If anyone got it, it was Dennis.

Today, Dennis provides autism training and resources for law enforcement, emergency first responders, parents, educators, care providers, and the autism community. His training video, Autism & Law Enforcement Roll Call Briefing is in use by the Department of Homeland Security and hundreds of police agencies throughout the country. The video provides a quick and engaging education in autism that helps increase safety for both officers and individuals with autism.

Dennis has downloadable resources and forms for parents and professionals on his website. My personal favorite is the Autism Emergency Contact Form. Many law enforcement, fire rescue, and emergency 911 call centers are willing and able to record and red flag information from this form into their data base. When a call comes from families that participate in the red flag program, 911 operators can alert the first responder before they arrive with key information that can improve the response.

By the way, Dennis is an engaging speaker with a good sense of humor and is such a nice guy.

Check out his website Autism Risk Management here.

Laura

www.laurashumaker.com

Even our schools embrace difference as long as it is coupled with fun. Remember Spirit Week in School? As the end of the school year and exams approach, school principals allow students to have fun with what they wear to school. There is Twin Day when two students can dress alike, Pajama Day when students get to wear their PJs to class, and Crazy Day when different colored shoes, plaids and stripes, and underwear worn on the outside of jeans show up. The students look forward all year to their Spirit Weeks.

As adults, we take vacations each year to break up the monotony of our work lives. We need something different whether it is a trip to a ski lodge, the beach, or just a week at home doing nothing. Our sanity often depends upon our throwing out the ordinary in anticipation of the non-routine, unexpected joys to be found on vacation.

In every part of our lives we seem to relish the unexpected, the joy of difference, the new, the unusual, the diversity of change – every part, that is, except our acceptance of people who are different, unique and diverse.

Why do we avert our eyes when we see someone who has both eyes closed as they walk because they are blind?

Why do we cut a wide swath around a person who has cerebral palsy and walks a little crookedly?

Why do we stare at an adult in a restaurant who has to have help cutting his meat because he has very limited use of his arms and hands?

Why do we refuse to have a child with significant disabilities in the same classroom as her same-age peers without disabilities?

Why do we lock away people who are different and say it is for their well being?

We do it because we are hypocrites.

As long as change and difference are comfortable and fun, we have no problem embracing them. Differences in people make us uncomfortable, and God forbid any of us should be uncomfortable.

I am grateful for the people who don’t mind being initially uncomfortable only to find the beauty and joy in diversity. I am grateful for those who embrace difference and find the fun in it. I am grateful for the people who would eat black Jello…

Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.

Does that bother anyone else, or am I just being hypersensitive?

My oldest daughter, now 18 years old, is intellectually disabled. I adopted her when she was 9 years old, and she soon had to learn about appropriate behavior between adults and children. For instance, by 5th grade, it was time to stop hugging her teacher. A handshake would work just as well.

I believe that if we parents don’t have high expectations for our children with disabilities, we can’t complain when others don’t. If we don’t show respect to our children, how can we expect others to respect them? To me, walking through a store holding the hand of a child who appeared to be in his late teens was not respectful to that child.

I understand that in some instances our children need support to help them walk. My youngest daughter does because she is blind. But, because she is a teenager, I don’t hold her hand – I offer my arm and act as her sighted guide.

When I am deciding what is age appropriate, what is respectful for my teenage daughters, I imagine what actions my 16 and 18 year old sons would accept. And hand holding while walking through a store, or a teacher holding their hand to go to the school cafeteria, or an aide holding their hand to go to the bus loop would certainly not go over well at all.

I don’t want to change my children with disabilities. I don’t want to make them neurotypical. I love them just the way they are. But, I do feel it is my job to prepare them for a world that can sometimes be quite cruel.

Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.

We can’t send her to daycare.  She has too many “issues” that would not make it safe for her to be there nor would we probably be able to have her in a regular daycare.  There are no “special needs” daycares near us, as we found out the nearest two are 2 hours and almost 4 hours away from us. 

So we are limited in our options. 

I took advantage of trying out a free MyGym class Monday afternoon to see how she would do in it.  The class was for the 7mo to 13mo babies.  There were only two little boys in there, about 7mo and 10mo.  They were so incredibly active — one was crawling all over the place, the other was waddling around.   They were throwing things, crawling up on things, going in and out of tubes. 

Hannah just sat there, holding a little ball in her hand.

As I was sitting there trying to help Hannah get to her knees just to get into a crawling position, I saw the other two moms look at me with that look of confusion on their faces.  They were very sympathetic, but it seemed to me they were looking for an explanation (I probably would too).  So I shared that she has some delays.  From that moment on, you could see the friendly pity in their faces, which even though they were incredibly sweet, it just made me uncomfortable since Hannah couldn’t do most of what the two boys were doing.

It just wasn’t right for Hannah.

After talking to my neighbor, we are going to check out Kindermusic.  Perhaps something not so focused on the physical would be a better social situation for Hannah to start with.   We are going to try out their free class on Thursday morning.  This class is geared for newborns to 18 months, so I think this larger age range would give us more flexibility as well. 

We will see how that works out!

You can read more about our fight for Hannah's life at LittleMissHannah.com (my nickname for her!) or join our Hope for Our Hannah Facebook cause.

You are a rockin mom.

And then I read below:

Thanks to me paying attention to you I was able to handle a lost Autistic child.

This was from my very good friend whom I have known for years. My kids call him Uncle A. He works for a company that sees its share of children. And because of what he's seen watching us raise Spiff and the things I send on Twitter about Autism and books I have, he was able to help a child that might have flummoxed him or his team. The encounter could have gone very negatively, but instead went very well for all involved. Including my boys' Uncle. Most importantly, for that child.

So all of you out there who wonder if people are paying attention and watching what we do to help our own children?

The answer is a very optimistic yes.

Have you ever wanted to tell the world about your child with special needs?

His hopes?

His desires?

What you wished parents of typical children knew and understood about a child with special needs?

Well, here's your chance! We are hosting a SnazL party!

And YOU are invited!

Using a fun interactive tool called SnazL, the gang here at 5MFSN, and Janice and Susan from 5 Minutes For Mom invite you to join us on Thursday, September 3rd at 2:00 p.m. Eastern, for our first SnazL party!

What? You don't know about SnazL yet? No worries! Take a look below to get the idea.

And remember that we'll be on hand Thursday at the party to answer any questions you may have about using SnazL!

Just make sure to visit SnazL.com before the party to create a fast and free account!

Want to do MORE than just chat? Upload a video at YouTube sharing what you wish typical parents knew about your child with special needs and we'll air it at out SnazL party!

After you have uploaded your picture let me know it's YouTube location in the comments section below!

We would LOVE it if you would spread the word about our first 5 Minutes For Special Needs party on your blog and via Facebook and Twitter too! Just think of the bridges that could be built!

Parents of Children With Autism Report High Stress Levels http://bit.ly/7tjBl

REALLY? You don't say!

I mean, parents IN GENERAL are stressed. It's tough these days to raise a child, let alone more than one. (At least to hear my Mother-in-Law tell it; and SHE SHOULD KNOW) But add to the mix a child with Special Needs (and that includes more than Parents of Autistic Children) and you have a bubbling over cauldron of STRESS.

I can't think of a time when I am not stressed. Spiff's schooling and his social issues are always "on" in my brain. Add to that his younger brother, who I'm always trying to give the same amount of time to, even though he doesn't necessarily require it. There there's the day-to-day of just running the household; sometimes without my husband's help if he is on the road. I also have a job that requires my effort that has it's own brand of stressors.

Of course I can't forget the time of year that makes the stressors consider going on strike, the IEP season. That time of year is even too much for them to take.

I need to also add in the added stress of the Media War on/in/about Autism and the explaining/justifying/screaming I have to do about the varying divisive views that are brought out because of the way Autism is discussed. I find myself quoting Rodney King more often than I'd like in any given day.

It's no wonder we constantly feel as if we are treading water. Or even sinking in quicksand.

I wish I had some magic potion or some handy trick or tip to impart that would solve the problem; but I'm just as lost as you are. I'm sure I do something that helps alleviate my stress levels, otherwise I might have just imploded by now.

I do have Girl's Night Out sometimes. Mani/Pedis. Lunch with a friend every so often. I have good friends and family and a great support system both in our neighborhood and at school. I'm very grateful for this.

But honestly? I still feel the stress. I still have the "I've put one fire out; Oh Look! there's another one!" radar running 24/7. But I muddle through the best I can. It's all I can do.

What do you do to help alleviate your stress?

Shash is making sure her son's IEP i's are dotted and the t's are crossed for her son's Freshman year of High School. Click over to Diary of a Crazed Mommy to read more about her life and her amazing family.

Today's winner was chosen by Random.org.

And the winner is………….

heidimarie!

Don't forget! Take a picture of your child enjoying some ice cream and you could win a YEAR'S SUPPLY of BLUE BUNNY ICE CREAM!

How cool is that? (Get it? Ice cream…….cool…? hee……hee)