How I arrived at “Delight Station”

Ever since Vanessa’s birth I’ve been interested in pushing back at any barriers which appeared for her. For me it was natural to ask over and over; “Why?” “When?” and “Why not?”

Some ‘professionals’ tried to bully me, some patronized and condescended to me, some labeled me, some even called me names.

But I have a tough skin. She’s our daughter, my love has no limits.

Vanessa ~3 years old

Being awesome

When Vanessa turned three I registered her for the church pre-school. I mentioned that she had Down syndrome in the application. The Director said ‘no’. My mom, who had devotedly attended church and tithed for years was flabbergasted at their response. I went over the Director’s head, called the Pastor, and said we needed a family meeting with him. My aunt, mom & I met with him, and he changed the Director’s mind.

Things went along well until the time Vanessa was unsupervised when she was told to walk back down the hall to the classroom after a bathroom break. Instead, she kept walking past the classroom door to the little dark space under the stairs where she quietly stayed while the teachers called her name and panicked that she may have gone up the stairs and out of the building to the busy road in front.

When I came to pick her up, they told me they wanted to expel her! They insisted her behavior was due to her disability. I explained no, she was acting like a typical unsupervised 3-year-old, and they agreed to let her stay.

We kept her in the program not just for Vanessa’s pleasure of being at school with new friends and experiences, we also hoped the teacher would see Vanessa as valuable beyond her label … just like the typical kids were valued and respected for just being themselves. Hopefully the next enrollee with a learning difference would be sincerely welcomed to the program.

Vanessa ~5 years old

Winning the race, obviously

When Vanessa was 5, the public school begrudgingly mainstreamed her.

Four and a half months after school had begun, after them saying “yes, yes, we will,” but procrastinating, finally, in January, she spent half her day in kindergarten. She did well for the 8 weeks she was in the class.

One day I stopped into the Special Ed class where Vanessa attended the other half of her day to ask some questions and discovered horrible conditions.

A boy I had only seen with a smile on his face, and who was known to be a bit boisterous, had his hands tied behind the back of his chair and he was biting down on a pencil placed in his mouth.

I walked over to him, took out the pencil and untied him. The teacher said, “What the heck are you doing?” I backed up to the door so I could get out quickly and said, “Well I’ve untied Teddy (who’s name I’ve changed for this blog post) and next I’m headed to the principal’s office to try to get you fired.”

I took Vanessa out of school and kept her at home. The district threatened to charge me with truancy if she was home more than a few weeks. I ignored the threat.

I told Teddy’s parents and then the other parents what had happened. They asked their kids questions about their experiences at school and were appalled at all the disturbing stuff going on in that classroom: The kids reported that the teacher had a big knife in her desk drawer, she called students names, grabbed and pulled their arms until some cried. On Friday afternoons when she was saying goodbye she would tell them there will be no recess next week because they didn’t ‘listen well enough’ that day, etc, etc,  We filed a formal complaint to the School Board.

Turned out they didn’t fire her, they kept her on and ‘Remediated” her.

We asked for a new school building. The district said yes and bussed the whole class to a different school. The first day I asked for mainstreaming again. They said ‘no’. I had advocacy fatigue at that point, but I approached the classroom teacher and asked if we could please have pre-reading skills introduced and worked on? She said she’d never done that before but sure, she’d try. That teacher was the start of Vanessa’s actual education. Over the years she’s grown in her abilities and can read and write at a solid 3rd grade level.

Vanessa & Jacquie

High School Graduation

Things went smoothly for the rest of grade school through high school. She was mainstreamed occasionally, participated in Special Olympics, had friends and she flourished.

Then I looked for a Day Program after she graduated and found the only option: a state approved program in the town next to ours. I went in for a tour, was shocked at what I saw and cried all the way home vowing to create something better for Vanessa.

After hosting get-togethers and parties with her friends I realized that many others needed and would thrive with a ‘Best Practices’ Day Program available in our town.….so I applied and become a PASA (Program Approved Service Agency). The local government monitoring agency pushed back:  ”You can’t do this, it’s too hard, and only corporations are Day Programs.”

Our program grew to about 55 participants over 7 years. Then a national corporation approached us to merge with them. They were a well-funded non-profit and I felt handing WINGS over to them was a good move for the sustainability of the program.

Next, I opened a residential Agency with a focus on Family Caregivers and Host Homes mostly because I noticed Group Homes were closing and becoming obsolete, and because Vanessa wanted to continue to live interdependently with us at home.

When the pandemic came Vanessa was still working part-time at her job at The Arc. The day program closed and offered virtual classes. It was difficult to attend with her schedule of work, private art classes and going with a ‘provider’ to walk on the trails around town. She wanted to go online to find her own classes which was VERY difficult for her to do independently, and unsafe for her to be roaming around the internet unsupervised.

The Delight Station Logo

The idea popped into my mind of a safe, fun, variety program of lifelong learning classes made specifically for adults with IDD, available anywhere, anytime, with peer participation, exercise, hobbies to share, healthy eating examples, opportunities to give back, all with unlimited viewing on a tv or laptop.

I did some research and quickly became intimidated. I thought; “Oh no, more barriers!!!!  This is out of my league, there’s no model for us to follow…We’re going to need to make an ‘app’ … I’m 100% NOT tech savvy.”

My niece and nephew offered to balance my experience with their variety of skills, and abilities to quickly learn and adapt to the unforeseen barrage of challenges. They also have a younger world view perspective to bring as co-founders of Delight Station.

After having the privilege to support Vanessa’s ‘Best Life’ for 44 years, now it’s time to create something ground-breaking not only for her but for hundreds of thousands of others. Our creators are experts in their respective fields, trained and believers in our methodologies.

Our inclusive person-centered environment provides opportunities not currently accessible, creates enrichment, offers a platform to help out in the ways they are able, serves up lifelong learning classes and joy for members.

Our delight-filled vision for adults with IDD to thrive is now a reality.