How do special moms celebrate Mother’s Day?

Mother’s Day can be a mixed blessing for a woman who has a child with a disability. For years after my son was born, I begged my husband not to get me a gift for Mother’s Day. “I’m not your mother!” I told him.

I knew my son wouldn’t be making me a card. He wouldn’t be presenting me with dandelions picked especially for me. My son has severe mental and physical disabilities — he doesn’t understand what Mother’s Day is.

I was determined not to let any of that bother me though. I knew I was a good mother, and I knew my son loved me in his own special way.

And then one year — my son must have been 5 or 6 — I burst into tears on Mother’s Day. “I’ll never get to celebrate like all the other mothers do!” I wailed. My poor husband didn’t know what to do.

This article on parental grief and adjustment to a child with disabilities reassures me I am not alone when it comes to feeling a bit of sadness on Mother’s Day. It lists Mother’s Day as one of the “common occasions of stress for families of a child with a disability.”

Ever since that outburst of mine, we’ve gone out of our way to celebrate Mother’s Day. This year we started early. Last weekend I needed new clothes. My husband came along on a shopping spree. When I couldn’t decide between two outfits, he whispered, “get them both.” He said our son wanted me to have new clothes for Mother’s Day. I wore one of the new outfits last night. We went out for a special dinner. I’m making up for lost time — instead of Mother’s Day, I now celebrate Mother’s Week!

And for the real Mother’s Day we’re heading to Wisconsin to visit our grown son in his group home. We’re proud of him. I’m proud to be his mom and happy to celebrate as a family.

I’d love to hear how other special moms have come to terms with Mother’s Day and how other families with special children celebrate each year — I’m always open to new ideas.

 

Training Conference wrap-up

Hello, to everyone! Last week was interesting. I was not at my current place of employment, which is Easter Seals Therapeutic Day School. I was attending a conference by, wouldn’t you know, Easter Seals, Inc.

The first day I had to admit was entertaining to me. I knew I had to deliver a speech to all of the Easter Seals affiliates, but I didn’t know I would carry a life-sized cutout of myself on the stage. First, I asked myself, “Who is more handsome, me or this piece of cardboard, who is an imitation of me?” The audience (consisting of the people from various Easter Seals affiliates) loved the cutout of me, but they loved me even better in person. Overall, the presentation was the one people will never forget during their time in Chicago.

The third and final day was pretty good. First, I went to a couple of sessions at the hotel, to prepare my mind. Those sessions in the morning were interesting and I got something from both these seminars: always prepare yourself. That is what I ask you to do to be successful in life.

What I got out of this week at the Easter Seals Training Conference was to always look forward to new things in life. That is what I aim to do as long as I’m a representative for Easter Seals, Inc.

Beth Finke and Maurice Snell

Maurice Snell with Easter Seals and Autism blog moderator Beth Finke at the Easter Seals Training Conference

 

Live from the Palmer House

Hello everyone! I am blogging from the annual Easter Seals Training Conference. This year it’s at the Palmer House Hilton, a legendary old Chicago hotel — Frank Sinatra used to hang out here during visits. Easter Seals staff from around the United States and Canada and Ability First Australia are the ones hanging out here this week, though.

Well, we’re doing more than just hanging out — we’re participating in training sessions and sharing ideas. I am meeting Easter Seals colleagues who provide services and support in their communities. It’s great to have them here in Chicago.

A lot of the scheduled sessions center on autism. In fact, when President and Chief Executive Officer Jim Williams gave his welcome speech this morning, he talked a lot about autism and the services Easter Seals provides to individuals with autism and their families. He also mentioned our ambitious Vision 2010 goal to annually serve five million people with disabilities or special needs.

Nearly 400 people are at this conference — a big group. Everyone here is interested in learning the latest on autism and finding out the newest and best ways to continue serving clients and their families. In the hallways you hear people sharing stories and asking questions. Two well-attended sessions this afternoon focused on autism. It’s very encouraging to be around so many people so sincerely interested in services for people with autism!

 

Blogging by ear

Hello, I’m Beth Finke, Easter Seals’ Interactive Community Coordinator. I’m thrilled to be hearing from you all. What that fancy “Interactive Community Coordinator” title means is that I’m the one moderating this new autism blog at Easter Seals. I’ll be reading through blog comments on a daily basis and forwarding your comments to Easter Seals blog authors and information and referral staff. We want you all to feel comfortable sharing information and interacting with one another — that way this online community will thrive.

I should tell you — I have firsthand experience with disabilities. I am blind and use assistive technology. A computer program called JAWS reads the text on my screen out loud. That’s how I’m able to read your comments to the blog. I also have a grown son who has developmental and mental disabilities of his own. What that all means is I am familiar with — and have an inherent interest in — the services and feelings you all are writing about when it comes to dealing with disabilities. You are not alone.

If you have any questions about my role as blog moderator or our community guidelines, don’t hesitate to ask. And keep your comments, questions and recommendations coming!

Read Beth Finke’s biography.

 

Shared space on the ‘L’

My professional life of working with people with disabilities brings me joy every day. And, seeing people with disabilities out and about and living their daily lives in our shared community brings an instant smile to my face.

Living in Chicago, I get to ride the ‘L’ train to/from work everyday. Accessible transportation is a huge issue in the world of disability rights. I get to see people with visible disabilities almost daily on my train. When I see people with disabilities on public transportation, I think that the work I do may be producing results. They -– like me -– are on their way to work, going to a friend’s house or heading downtown for a film -– living life.

Sometimes I get to see a person who is exhibiting some of the characteristics of autism.

Last week I entered the train and took a seat behind a young man who was grinning ear to ear. Most of us have a bit of a scowl, so this in itself was pleasant. As soon as the train took off he began to slowly rock to the motion of the train, and his smile widened.

The world of the ‘L’ is basically each person stays in their space and operates in their own universe. This young man clearly knew the rules. He rocked in his own space and never swayed out of his personal bubble zone.

Did people take notice? Maybe.

Did they see his big smile and experience some shared joy. Hopefully.

Is he a person with autism? I will never know.

But sharing space with someone who experiences that much pleasure from a simple train ride reminded me that everyone has something to contribute to brighten our world.

 

Texas is a BIG state

HOWDY, to you (the people at Easter Seals)! First of all, my beloved grandmother passed away Easter Sunday afternoon. I saw it coming, but it was a relief for my family that she got rewarded of going home to God. She lived a wonderful 86 years of her life, and I was fortunate to spend 23 years with her. She taught me a whole lot of things, in which she was an inspiration to me. She has helped me to become an independent young man, whom she adored highly. She was a great person to everyone and loved us; she’ll be missed.

On a positive note, I have been traveling for Easter Seals, which I finally had a chance to do. On the days of April 2 and 3, I traveled to San Francisco, California to visit Safeway Foods. For many years, Safeway has been a supporter and national corporate sponsor of Easter Seals (especially for autism). I was fortunate to be a part of their successful campaign and glad to help them raise money for Easter Seals.

Next, I traveled to Dallas, Texas to visit several Easter Seals sites, both in the Dallas and Fort Worth areas. I stayed in the vicinity between Dallas and Fort Worth. Although I was in those two major cities, I also been to cities such as Carrollton (where Easter Seals of Greater Dallas is), Irving (that’s where the Dallas Cowboys play football in Texas Stadium), Lubbock, Lewisville, just to name a few. I would like to say Texas is a BIG state (Alaska is larger geographically, but who cares? People rarely visit Alaska anyway). I fell in love with it when I first arrived!

I was on vacation and traveling for business at the same time; isn’t that interesting? The vacation part of this was that I was on spring break from my place of employment, which gives me the opportunity to exit the cold from Chicago. However, for the business matter, I was traveling as being the representative for Easter Seals. For those of you that may or may not know, April is Autism Awareness Month. I’ve visited some Easter Seals sites in both Dallas and Fort Worth that provide autism services and met some very nice people over there who make their work special. I was fortunate to share some of my stories of my experience with everyone in Texas.

As I prepare to continue my mission of helping others and being myself, I ask that you will pray for me for a brighter future ahead! PEACE!

Maurice Snell is sharing his story and travels as the Easter Seals 2007 Adult Representative. He’ll be providing updates from the road from time to time.

 

The Easter Seals Web site is DA BOMB!

As Easter Seals’ 2007 Adult Representative, Maurice Snell shares his story with others about living with autism. Maurice also is a classroom aide and mentor at Easter Seals Metropolitan Chicago (IL), his former school. Watch Maurice’s movie to learn how Easter Seals helped to change his life. This is Maurice’s first post about his recent travels for Easter Seals.

The Easter Seals website is DA BOMB! I liked what I saw and hope many people (families of autistic individuals) will get involved in the future.

I would like to add a “little” something to the Easter Seals blog.

Work at Easter Seals is going very well for me. I deal with the same duties as I have for the past six months, that is administrative assistant duties (answering phone calls, handling paperwork and doing personal errands for staff). But I still get to greet staff, students, and vistors with my great smile, so I still like my job.

Speaking of Easter Seals, I am the National Adult Representative for this year. I stay in Chicago and in the Illinois area for the most part, but traveled to Springfield earlier in March and visited many places in this historic city as the state capital. I visited many places such as the Abraham Lincoln Museum and the state capital and met many wonderful people there. So far, Springfield is a great place for me, besides my excursions in Las Vegas and Puerto Rico.

Which brings me to this: last week, I traveled to Dallas, Texas to continue doing what I’m doing, that is share my story to many people who are interested of learning more about the Easter Seals organization. I was on one of the news stations in Dallas telling about my personal experience with my disability, and that I’m an intelligent and caring person. I’ll let you have a copy of the newscast if possible, but for now, I’m focusing on changing lives for many people in this nation. That is my mission as long as I’m representing Easter Seals.

Read Maurice Snell’s biography.

 

A big tent

Since we launched this blog a few days ago, I’ve had many phone calls and emails from Easter Seals board members, staff and affiliates asking me about Easter Seals’ position on topics like chelation therapy and other things mentioned in various comments.

Fundamentally, Easter Seals doesn’t take a position on these kinds of issues. Our goal is to provide an online community where people with all kinds of views, theories, and concerns can express themselves, can share information, and can interact with one another. It’s a big tent that has room for everyone. Ideas and opinions that are controversial are likely to be expressed, and that’s fine. Our position is that we want people to communicate and share.

Easter Seals’ focus is on providing personalized services –- today — for children and adults with autism and their families to help them accomplish their goals in communities across the country. That has always been our focus and will continue to be. And that’s the focus of this blog.

When new treatment modalities and therapies are validated, they will be incorporated into what we do at centers around the country. When new science is verified, that will be incorporated also. We will adapt and change, as our organization has been doing since 1919.

In the meantime, I want to personally invite everyone to join Easter Seals in our big tent community. I am thrilled by the richness of the dialogue so far, and encourage you to tell others about this community.

I’ve found the past few days to be educational, sometimes confrontational, and very often inspirational.

Let’s keep talking.

 

The older you get – the more there is to learn

I have been a professional in the field of disability services for more than two decades – and – I have a lot to learn. This past week I had the opportunity to learn from my esteemed colleagues at the Technology and Persons with Disabilities Conference in Los Angeles. This conference has been nick-named CSUN, as the California State University Northridge has championed this conference from its conception. This annual conference brings together professionals and assistive technology manufacturers for a week of professional development and networking. I am lucky enough to attend every year!

Augmentative and alternative communication (AAC) is the area assistive technology that is of most interest to me. My career has focused on individuals with autism who do not develop spoken language. AAC provides alternative means for these individuals to convey their wants, needs, hopes and dreams. CSUN brings together many of the manufacturers that develop and distribute the technology that is used for AAC in large exhibit halls. I cruised the exhibit halls at looking for new ideas and seeing what manufacturers are developing in the area of AAC. The Assistive Technology Industry Association Web site is a great place to check-out the AT manufactures.

Learning sessions in AAC were also available throughout the week at CSUN. I learned about the use of text-messaging as an effective means of communication for AAC users. A session from Children’s Hospital in Boston described cutting-edge research to promote more effective communication for people with autism. These sessions and many more are wonderful professional development opportunities. I also was able to provide a session to my colleagues about a unique program I worked on in Hawaii to increase parental knowledge and participation for young children who utilize AAC.

I recently visited Amanda Baggs’ YouTube site. She is an AAC user and a person with autism. She has received national attention for a video she produced and published via YouTube, In My Language. I was blown-away by her message about how she communicates with the world. And, her communication strategies include AAC. Learning from the source – people with autism – is always enlightening.

Going to conferences like CSUN, reading professional literature and taking the opportunity to learn from people with autism like Ms. Baggs are all ways that I try to stay-on-top of what is happening in the world of autism. Having the opportunity to see a person with autism, an individual who does not utilize spoken language, successfully convey their message via AAC for the first-time is amazing. I have had this amazing experience many times in my career. This feeling will keep me traveling down the learning path – hoping that my work will include opportunities to support people with autism to become effective communicators. This feeling of contributing helps keep me motivated.

What’s your motivation?

 

Advocacy counts

This April is National Autism Awareness Month. I hope that it will be a time when business and community leaders, politicians, and all of us become more keenly aware of the impact of autism on so many individuals and families across America. It’s a time when we can raise our voices to bring attention to this important issue that affects so many. (more…)