The Important Ingredients of Tom & Lydia’s Marriage

Linda Orso is the mother of Lydia Oso, who was recently married to Tom Swenson in Clayton, MO. This week, Linda talks about her daughter’s journey for our blog.

On November 26, 1977 our daughter, Lydia, was born in Evanston, Illinois. Two weeks later she was diagnosed with Down Syndrome. At the time, we did not know anything about Down Syndrome, and had no idea what was in store for us, our family, or for Lydia. However, very soon after Lydia’s birth we met with parent support from The National Association for Down Syndrome. At that point, our journey was officially underway.

The point of this article is not to tell you about Lydia’s life story, but to share with you the turn of events that we never expected to happen.

On April 13, 2013, Lydia, who is 35, and Tom Swenson, who is 39 and has Epilepsy and developmental disabilities, got married.They currently live with Tom’s parents, which is about 10 minutes from us.

To give you some background, Lydia spent most of her early years in Evanston and Winnetka, IL, where she was educated in various public high schools. In 1994, we moved to the St. Louis area.

Throughout her life, Lydia has had many goals and dreams. Lydia has been blessed with talent, determination, and support, all of which have helped her achieve many of those goals and dreams. So, when is became obvious that Lydia was determined to one day be married, we took it very seriously (eventually!) and encouraged her to develop a plan for accomplishing this dream. One day, she met Tom, who shared her dream of getting married.

Tom and Lydia (image courtesy stltoday.com)

They fell in love, got engaged and, in April, became married.

While it would be fun to share their love story of how their relationship blossomed and grew over three years, we would rather share with you the important ingredients we believe enabled the relationship and marriage to happen.

Once Tom and Lydia announced their desire to be married, we insisted that they begin a regular, bi-weekly schedule of pre-marital counseling. We were fortunate to find a counselor through our local St. Louis Arc, which has extensive experience in counseling couples with developmental disabilities. They will continue to meet with this counselor in the foreseeable future.

From the outset, we all agreed on the importance of being completely open with one another on all matters, including physical and emotional health, finances, sex, and whether or not the relationship had the makings of a long-term match. In these conversations, Tom and Lydia agreed that children would not be in their future.

There were other important ingredients, as well…

  • Tom’s parents offered to have Lydia and Tom live with them in their home once they were married.
  • We moved closer to the Swenson’s to help share support responsibilities.
  • Tom’s parents took primary responsibility for providing or assisting with Tom and Lydia’s transportation needs because neither Tom nor Lydia drive.
  • Both Tom and Lydia have full time jobs and receive health benefits.
  • Tom and Lydia are capable of handling many routine life skills, such as cooking, cleaning, laundry, computer, and cell phone skills.
  • Both sets of parents are actively involved in helping the couple with other aspects of life, for example, money management, doctor’s appointments, decision making, and vacation planning.
  • Both sets of parents are very compatible with each other personally, and in terms of everyone’s goals for Tom and Lydia.
  • A prenuptial agreement was developed by an attorney to address legal, long-term health and financial matters.

Of course, every situation is different and maybe some of this ingredients cannot be available for everyone, but this is what we were able to help create for Tom and Lydia.

We have always believed in the “dignity of risk” and understand that marriage for people of any ability level involves risk. We feel that Lydia and Tom are prepared to live a happy life together and are prepared to meet the challenges that lie ahead.

If you would life to know a little bit more about their story you can check out this short video of their wedding day, or read the St. Louis Dispatch article about their big day.

Joe and Linda Orso

 

Wrightslaw in St. Louis

JJ Gossrau is a parent and a member of the Kirkwood-Webster Community Group through the DSAGSL. This week in the blog she takes time to talk about the Wrightslaw Conference she attended on May 14 in St. Louis, sponsored by MPACT.

Last Tuesday, May 14, the DSAGSL provided me the opportunity to attend a Wrightslaw training by Pete Wright, Esq., on Special Education Law.  The training was held at UMSL and was well attended by other parents and professionals looking for ways to be effective advocates for children with special needs.

Mr. Wright presented special ed. information in concrete terms and provided resources that will help the participants access answers quickly and efficiently in the future.  Thanks to the training, my will to be prepared and ready for the challenges that sometimes arise when navigating the special education system has been renewed.  I don’t feel as overwhelmed by the “what ifs” and recognize that it is just a matter of being organized and prepared for meetings.  I think the key message throughout the training was be prepared and don’t assume others have the same goals in mind for your child as you do.

By being prepared and educated about your child’s education, you will feel more in control and have a better understanding of the supports available to help your child succeed. Special Education Law, From Emotions to Advocacy, and All About IEPs, are the books Mr. Wright referenced throughout the training and I think they are worth checking out if you have a child receiving special education services.

For more information, you can visit wrightslaw.com or connect with Wrightslaw on Facebook.

Important advocacy message: First Steps funding

UPDATE:

Legislation has been passed to keep First Steps funding. Thank you for all of your help in keeping this program alive!

ADVOCACY ALERT: Funding for First Steps was removed from the Missouri state budget last week.  A deal has since been reached to restore that funding, but legislation needs to be passed in order to do so.  Governor Nixon is in KC and Springfield today meeting with parents and advocates.  His message: In order to save this funding, we must use our voice this week.  Below is a link to contact your legislator directly, and also language from the DESE website that describes what must be done to keep First Steps intact.  Call your legislators and share this message with your friends and family!

Click for Legislator phone numbers

Info about First Steps (Source: DESE):

In an effort to assure that sufficient funds for First Steps and for ECSE will be available in FY14, it will be necessary for the General Assembly to establish the Missouri Senior Services Protection Fund during the final week of the 2013 legislative session. The Missouri Senior Services Protection Fund will provide the funding stream through which General Revenue will flow to these programs. It is our understanding that without this being accomplished; the ability for the state to sufficiently fund to these programs will be impacted.

Why we Step Up – 11 years and counting

Christy Klaus is our organization’s Family Support Coordinator, but her biggest role in life is as mom to her kids, including her awesome daughter Olivia, who has Down syndrome. The Klaus family has a long-standing relationship with our annual awareness walk, Step Up for Down Syndrome, dating back to years before Christy joined the DSAGSL to help serve other families. Why does she still organize a team of Livi Lovers every year? she took a minute to tell us in the blog this week:

“It’s that time of year – time to Step Up for Down Syndrome!”

Olivia at the 2008 SUDS walk – formerly known as the Buddy Walk

This is how my team e-mail and letters start every year – Step Up for Down Syndrome has become a tradition for our family.  We form a team and ask our family and friends to support our daughter, Olivia, by walking with us and/or making a donation to the Down Syndrome Association of Greater St. Louis.  This year is the 11th year for our team.

Why do we do this?  I remember the first walk we went to, back in 2003.  Olivia was only one year old.  There were so many people there with their families. I never knew how many people in the St. Louis area had someone with Down syndrome in their lives.  It was amazing, comforting and it made me feel proud to be part of this community.

Every year after that, we sent out a letter giving our family and friends an update on Olivia and all great things she was doing.  It was our own personal awareness mission.  We also believe in the mission of the Down Syndrome Association of Greater St. Louis and our family and friends were happy to support a great organization.  Over the years the Livi Lovers have raised close to $10,000.  We have enjoyed the walks, activities and of course the baseball game for Walk in the Park.  Olivia finally made it onto the field last year – an experience we will never forget!

Considering starting a team of your own? Start your family tradition this year!  You won’t regret it!

 

Community Groups continue to grow throughout Missouri

Our Community Groups are spread out all over the state – one of our newest is out to serve and connect the families in the Lake of the Ozarks. Group leader, Britt Wynne, talks about why she wanted to get the group off the ground and what is on the horizon for the group.

Hello, my name is Britt Wynne.  My husband Rob and I have a boy, Scott, who will be 3 in July.  I have been a Para-Educator for 18 years for children with special needs and my husband has gone on field trips and has visited with my students for many of those years. So when I was 35 years old and in the “high risk” bracket that there was a chance of having a child with Down Syndrome,  we were somewhat prepared.  We both feel blessed by God for him.  Now, I have a chance to be a parent  of a child with special needs and feel we are the best advocates to educate others.  There once was a group here at Lake of the Ozarks, but had not been active for a while so we decided to do it ourselves along with some families we knew through school and outside of the Camdenton Area.  Our group is Down Syndrome Group of Lake of the Ozarks; we currently have 6 families and are growing.  We want to reach all ages from birth to adulthood and are excited about meeting new families.

We are currently planning Spring/Summer kick off sometime in May so details will be coming soon!  Contact me at 573.434.6289 or Rob Wynne 573.216.3069 or email dsgloz@hotmail.com