Mother's Week: Jennifer Hoppe

Theme: Outstanding Autism Mother's Week. This week I am profiling amazing and inspiring moms who helped to make things happen for their children with autism.

Today's focus is on Jen Hoppe. This mom appeared on an ABC Nightline News program in 2005 with her then 21-year-old daughter Jaime Hoppe (along with some other adults). The title of the program was "A Place in the World." The focus was adults with autism. Jaime was featured singing the song, "Wind Beneath My Wings." I couldn't help but wonder if Jaime wasn't thinking about her mom and dad when singing this inspiring song.

I was impressed with Mrs. Hoppe and how she talked about creating opportunities for her daughter that previously did not exist. Her daughter was born in 1984 when there wasn't a lot of programs for and information about individuals with autism. I found Mrs. Hoppe to be a positive, proactive individual. I was amazed at how well she comforted her daughter-in-law who had just received an autism diagnosis for her son, then a toddler. Here is a cut and paste from the show's transcript of what she said to her grandson's mom:

"It's going to be okay, honey, it's going to be okay. You're doing everything you can. He's doing well, right? He's doing good. He's going to be fine. He's a baby. I didn't have this chance, okay?Look at how good she is with the chance I didn't have. Can you imagine? It's going to be fine. Got good genes."

One of the opportunities Mrs. Hoppe helped to create (along with her husband, Jim and two other couples) was the Quest Autism Foundation which operates out of the Wyckoff, New Jersey YMCA. The Quest Autism Foundation (QAF) is a private non-profit 501(c)(3) organization that assists and supports adolescents and adults with autism by:

"P R O V I D I N G

excellence in vocational, and recreational services.

P A R T N E R I N G

with a broad spectrum of community sites.

E N A B L I N G

individuals with autism to lead more productive and independent lives.

I N C R E A S I N G

recreational and leisure programs for all.

C O N T R I B U T I N G

to the national dialogue to address the severe shortage of adult services."

My thoughts: One of the biggest needs in the autism community is opportunities for adults with autism. There aren't many. The QAF is hoping that their program will be emulated in other YMCAs. If you are interested in this topic, I'd highly recommend checking out their site by clicking on the link provided above.

Mother's Week: Elaine Hall

Before autism awareness month in April had begun, I had started to work on weekly themes. For April, I covered most of the events my group, Central Michigan Autism Society of America, hosted here in Mt. Pleasant.

So now that life is sort of back to normal, I will go back to my themes. Yesterday was Mother's Day here in the United States, so this week I will focus my posts on mothers who have made a difference in the realm of autism. Over the past two months I've learned about women who created a way to fulfil unmet needs for their children with autism and others like them. These moms are truly inspiring and amazing.

Today's post will be about Elaine Hall from The Miracle Project. Those of you who watched or read about Autism: The Musical may be familiar with her name. She is "Coach E," mother of one of the stars, Neal. She is the woman who pulled everyone together to put on the show featured in the HBO documentary that debuted March 25. HBO has some nice pages dedicated to Neal and Elaine as well as the other families of the four other young stars of the HBO film. There are some nice pictures of Neal and Elaine on their page. There are also updates on Neal and some nice quotes from Elaine.

From the HBO site:

"Elaine Hall - "Coach E," the founder of The Miracle Project, is an educator, writer, consultant, performer and professional acting coach for TV and film who has written and directed more than 30 children's plays. She is the mother of Neal, who was diagnosed as autistic after adoption. When traditional therapies did not help Neal, Hall sought out creative people (actors, writers and musicians) to work with her son, developing new methods to reach autistic children, which resulted in The Miracle Project."

Featured quotes from Elaine:

"The play at the end is really not the most important thing. The 18-20 weeks prior to the play, before we even get on the stage, are really the heart and the soul of the program. We literally have kids who start out hiding under tables, can't come into the room, it's too loud, they've never been in a social situation before. Their parents say, "I don't know if this is gonna work. They've never been socialized."

For the families, it's a community where it's not about therapy. It's the one place during the week where it's not about "What's wrong with my child and what goals do I need to set?" For the kids, it's a place where they come in and they're immediately loved and accepted and part of a community and missed. A lot of our kids -- you're not really missed because they kind of cause a ruckus out in the world. But here, if someone doesn't show up, they're really missed and everyone calls and wants to know where they are. It's like 'Cheers' -- it's a place where everyone knows your name."

Creative Corner Saturday: Imagifriends by D.J. Svoboda

For Creative Corner Saturdays I am hoping to go beyond my own family and feature the artwork and poems of individuals with ASD or their family members. Today I am featuring artwork that should make everyone smile. The colorful, quirky Imagifriends are from Imagiville where everyone is nice to each other.

The creator of Imagifriends is D.J. Dvoboda, a 24-year-old man with autism. The artists sells mugs, mouse pads, canvas bags and a fifteen-page coloring book. He also is hoping to create signs or murals with names (as seen above), for individuals and businesses.

From the artist:

"My name is D.J. Svoboda. I am the creator of the Imagifriends of Imagiville. The Imagifriends of Imagiville are based on the experiences I have faced during times at school. There were days at school when I was made fun of, and when I was picked on and treated mean. Those made me feel very sad and hurt. That is how I got the idea of the Imagfriends of Imagiville...D.J."

My thoughts: The artist also has free coloring pages on his site that can be printed out at home. He encourages children to write stories about his characters. I am thinking about sending the website address for Imagifriends to the director of my son's summer arts camp. I can see the campers there coloring his pictures and maybe even writing stories about them.

I can also see parents who of home school their children, particularly children with special needs, using D.J.'s artwork in their curriculum. I love that the artist was inspired by his not-so-great social experiences to create something so positive.

And Life Goes On

We are back in Mt. Pleasant now after being in Northwest Ohio for the last six days. My nine-year-old son with ASD went back to school today and my husband went back for a half-day of work at Central Michigan University where they are between Spring and Summer sessions.

My son has two back-to-back activities after school today. He has Special Olympic track practice from 4:15 to 5:30 and will ride a horse in his Proud Equestrian Program (PEP) beginning at 6:45. Thankfully Thursdays is the only day with two activities.

It might be difficult for my guy to get through both activities tonight because we arrived at home around 10 p.m. last night. My child will be exhausted. My big concern is how school will go tomorrow. It's hard enough for a neuro-typical person to control behavior when exhausted. Hopefully my young son with ASD will be able to manage.

As tiring as those activities seem, going back today is a necessity. There's something comfortable about returning to one's routine. Our hope is that our life will be somewhat 'normal' for awhile. I am hoping to get back to weekly themes here at this blog soon. I keep thinking that will happen and then something comes up. Hopefully, I'll get rolling with a theme on Monday.

As for me personally, I'm tired with an unshakable headache. I'm slowly unpacking and cleaning up the house as I keep an eye on my five year old son who has been watching way too much television today.

However, I'm fortunate to have caring friends and family. We've received several cards and emails expressing sympathy for the loss of my dad. I've appreciated all the support. This coming year won't be easy, but I'll manage. Take Care--jml.

An Unexpected Loss

This is the hardest post I've had to write since beginning this blog a little over six months ago. I cannot describe how difficult this last week has been. Nor can I adequately assign words to describe the wonderful person surrounding the drama that started last Thursday night.

You see, I unexpectedly lost my beloved eighty-year-old dad (whose home in Ohio is three and a half hours away from mine) last Friday. He had been working in his garage with a grinder Thursday evening when a piece suddenly broke off and cut his lip. He had been on blood thinner medication since having a heart valve replacement several years ago. My dad knew his wife didn't want him working with such tools because she knew if he cut himself it could be problematic. So he tried to sneak in a job while she wasn't home.

Unfortunately no one was with him when he became dizzy from the resulting massive blood loss. He fell head first onto the cement garage floor. Somehow he made it into his house and onto a chair. That's where my step mom found him unconscious. He was life flighted to a hospital in Toledo. A cat scan revealed that he had severe head trauma and that he'd never recover from his injuries.

His living will indicated that we needed to let him go, so we did. My step mom, her children, myself, and my three siblings made that necessary decision to take him off life support.

One could tell how many loved the handsome man with the beautiful white hair and sparkling blue eyes because so many were gathered in his palliative care room. So many, including myself were touching his hand or some part of him when his heart stopped beating. So many filled the funeral home for visitation hours today. I'm expecting the funeral home to be packed tomorrow morning and can imagine that every chair will be filled with a few people left standing in the back of the room.

There are three large picture boards and one slide show filled with photos of my father. There were so many pictures of my dad that we could have wall papered the walls of the funeral home. He attended every graduation, wedding, and anniversary party he was invited to. He went to family reunions and visited all relatives and friends regularly. He wore silly hats when given one, held babies with great pleasure, cut his friends hair, traveled with his fifth-wheel trailer and was known to fall asleep whenever sitting down in a comfortable chair.

I'll always remember him as a great dad who made sure I had a bicycles, braces, a college education, a beautiful wedding and even a down payment on my first home. He took great pride in being a great provider. It meant a lot to him to be able to provide for his two wives and his four birth children. It meant a lot to him to be there for his second wife and her large family and that they were there for him.

He loved both of my sons and it didn't matter to him that one of them was a little different than most children. In fact, I had just talked to him on the phone and told him that my guy with ASD would be riding horses in the Proud Equestrian Program again and also told my dad that my oldest child reminded me of him in terms of always wanting to be visiting friends and family. I also was careful and added that I didn't know where the autism part came from. I told him that I thought my guy with autism would be Ok and that he was doing really well.

It must of meant something to him to hear all that because my brother said that he talked about my son a lot on his last day. My brother was fortunate to spend several hours with him on that Thursday before his accident. I was fortunate to hear that my dad talked about my son with pride on that day. I'll always have that comfort and it means so much.

My dad demonstrated to everyone what it took to be a great person. My favorite picture of his is one that depicts him walking along with a little step-granddaughter, age three, following along behind. To me it showed that he was a guy to look up to. He was a great man and I am heart broken.

Night Owls

I have so many stories from just the last week that I won't be able to share them all. Here is my favorite about my two sons:

Night Owls

My husband left for Salt Lake City, Utah for a four-day conference last Tuesday, April 22. A trip to China last summer and a conference to Hawaii in January preceded his latest adventure.

Well, my boys noticed a pattern. Their dad brought them home at least three or four souvenirs a piece from both trips. I received gifts too. The occasions of his returns seemed like Christmas!

On the day that my husband was to return from his Utah trip, both boys started talking about the gifts they would receive. (Yes, I guess they are a bit spoiled!). However, their dad wasn't due home until 12:30 a.m.--way past their 9-9:30 p.m. bedtime. We went through the bedtime routine as usual and I went back downstairs to create and print out programs for the Tribute Walk that was to occur the next afternoon.

I had been in the middle of a painting job on my oldest son's room so that my husband wouldn't have to deal with the chaos that surrounds such work. He's not a big fan of new paint jobs. Transforming a room from blueberry blue to rice paper white (as requested by my son), has been no easy task.

Preparing the room with tape, etc. and putting on two coats of primer took much longer than I thought. I had to suspend the work on Saturday so that I could work on details for my big event the next day. This meant that both boys were tucked in together in my youngest son's small bedroom. (As of today, clean up from the paint job and the job of putting back bedroom furniture still needs to be completed.)

Is it needless to say that my boys that couldn't settle down? I tried my best to get them to go to sleep, but I needed to focus on my work as much as possible. All I can say was thank goodness the next day was Sunday. We didn't have to worry about getting up for school!

What happened when their dad returned just after 12:30 a.m.? My husband and his boss (who drove him home) were greeted by two giggling, happy boys in pajamas. They actually ran out to the car! The oldest gave him a welcome home card.

The boys received t-shirts with Utah logos (as did I), and three other gifts that suited their personalities. My youngest received a wooden animal and Native American set, a small box of shiny rocks and a small stuffed bear. My oldest received a wooden frog pen, a small stuffed frog and a paper back children's book. I received a Deer Christmas Ornament from Antelope Island (in the middle of the Great Salt Lake) and I believe my teal t-shirt was from the island as well.

Yes, the boys slept in the next morning. I was out of the door to chalk out the directions for the memorial walk by 8:30 a.m., but my husband said they didn't get up until 10:30 a.m. My little night owls definitely did not transform into early birds the next morning. I suppose that was a blessing. Smiles--jml.

Awareness Month Winding Down

Autism Awareness Month is coming to an end. It's a bit of a relief to this blogger who helped plan and implement some of the nine events my group, Central Michigan Autism Society of America (pending chapter) planned. Our Grand Finale was our memorial walk which turned out to be the beautiful, successful event for which the co-chairs had hoped. The family, who was a bit nervous about the whole event, was most appreciative afterward. I think we are all a bit pleased, but relieved it is over.

The awareness committee's efforts to bring awareness to the community was successful. We had good to great attendance for our events. Local papers covered most of our activities. A special thanks goes out to reporter Frank E. and Central Michigan University's student newspaper, CM Life.

Two of us moms were awarded for our autism-related efforts by a local radio station and/or United Way. One of our mom's won CFX (a radio station with staffed with people who have big hearts) Working Woman of the Year which was wonderful. A front page article of the winner and the nominee came out in our local paper.

The mom who won nominated me for volunteer of the week and I won some gift certificates, a plaque and recognition in general. CFX and United Way sponsors the volunteer recognition program. A small article about my efforts appeared in Sunday's paper which provided a boost of confidence considering I was partly in charge of our biggest event for the month. A lot was at stake because we were remembering someone special that day.

A guest column written by my co-chair was published in the same edition. She did a great job writing about the eight year old boy who died recently. I'm sure his family was touched. Both co-chairs wanted Sunday to be almost perfect and it was.

Anyway, during the height of the season some of us were joking around about "anything but autism days." As a result of our joking around, some of the moms and professionals in my community are planning to visit a local spa tomorrow--fitting since it will be the last day of the month. I haven't had the time to make an appointment and do not know if I'll be able to get in as the spa may be fully booked. But I'll have to admit that spa day sounds great right now.