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Odessa mom finds it tough to find services for son

Odessa American - 11/24/2022

Nov. 24—For Becky Sing, trying to find a program for her son Joey DeLeon has been rough.

Joey, 22, has aged out of Ector County ISD's special education programs. He has autism, obsessive compulsive disorder, has difficulty communicating and the mental capacity of a 3 year old, Sing said.

"He doesn't know how to tie his shoes. He can dress himself, but if I want him to look nice I have to lay out his clothes because if he picks them out, it's whoo," Sing said. "He doesn't bathe himself. I have to wash his hair and shave him. I have to wipe him when he goes to the bathroom ..."

Asked what she is looking for for Joey, who she affectionately calls Joey Bear, Sing said back in the 1990s, MHMR had a bus and they would pick up people with disabilities and they would go to a workshop and do something.

"That would be nice if they could bring that back, but I understand there are no volunteers. There's no money to pay people for this and I completely understand that," Sing said.

She has been on the list for House of the Sycamore Tree for four years and was hoping they could expand to add more spots.

Sing had four children. Nicholas, 29, who had Down syndrome, was her oldest and he died in 2011. She has another son who is 26, Reuben Valle, and has his own family and Elliot DeLeon, who lives at home with Sing and Joey.

Sing works for the Sarabia law firm. Her daughter-in-law acts as a care provider for Joey. She is continuing to teach him how to do laundry, which he also learned at ECISD's 18+ Transition Learning Center.

He can make his own sandwiches and get his own drinks, but he enjoys being on his phone with his headphones.

Sing said Joey will help her with yard work.

During a trip to Dallas in September, she was having her nails done for the first time ever. She talked to the manicurist who told her she helped her husband with a facility for young men and women like Joey.

"They do it Monday through Friday, and it's like 1 to 3 and they do outings. They go shopping or they go and watch a Texas Rangers game or something to that effect," Sing said.

She said she was told there is a waiting list, but it "goes by fast" and they have enough help so they can expand.

There's nothing like that in Odessa, she said.

Micah Pettigrew, ECISD special education supervisor, said any state service that students want to get into, as far as long-term assistance, day programming, they need to get on those waiting lists when their children are young.

She noted that a lot of times people have to leave Odessa to find the services they want or need.

"If somebody in Odessa has a student, that has disabilities, even if they don't feel like they're that severe, I would get them on the list because those lists are at least 10 years long; at least," Pettigrew said.

If you get the student on one of those lists in elementary school, by the time they're ready to graduate they're going to be closer to the top of the list, she said.

Pettigrew said when special education students graduate under their individual education plan with modifications in their curriculum and they've met their graduation and testing requirements, they can come to the Transition Learning Center for 18- to 21-year-olds.

Pettigrew said you only have from age 18 to 21 to have the Transition Learning Center in your life.

"So I highly encourage every single student that can qualify for this program to come through this program because this is all you have," because once you turn 22, even if it's in the middle of the school year, that educational service is over, she said.

The TLC program started in 2017 at George H.W. Bush New Tech Odessa. The new building on 12th Street opened in 2019, Pettigrew said.

PermiaCare and Texas Workforce Commission offer services that are aimed at helping to make individuals with disabilities employable.

There are other programs like Rock House, Spectrum of Solutions, SHARE and Bynum School for people with special needs that offer a range of services. There are also other services offered through the state.

Pettigrew noted that the Workforce Commission program is not for everyone because the young people have to be independent.

In 2013, Pettigrew started The House of the Sycamore Tree. Part of her vision was to start an assisted living facility for House of the Sycamore Tree students with special needs, but it is currently a day program with an assisted living facility account set up, but it's "nowhere near" where it needs to be.

House of the Sycamore Tree runs on donations and volunteers. It does not get state funding.

The 18+ Transition Learning Center is funded by the public school system and the two are not connected, Pettigrew said.

It teaches people with special needs social, life and work skills. Those attending learn to sew, cook, work on math skills in the computer lab, filing, deliver Meals on Wheels and more. The website says they also practice skills to help make them more self-sufficient and they play.

The program has 13 students that participate daily. The waiting list is about 17 people long, but it takes years to move up because nobody leaves.

"But we can't even get to the point where we can consider putting more people in because ... we can only operate with what we have. ... We're blessed. We have never not been able to pay a bill. We've never not been able to take care of the students. We are very blessed with the donations we get, but we ... can't grow because we don't get enough money to grow," Pettigrew said.

House of the Sycamore Tree has students come in on a trial basis of about three or four weeks to make sure it's a good fit for them and a good fit for House of the Sycamore Tree, Pettigrew said.

"We don't service all needs because we can't. ... The mission of the House of the Sycamore Tree is to help students be independent and employable ... So if there's a student out there with a pretty severe disability, they're not going to meet the qualifications for our program. They have to be able to get around on their own, go to the bathroom on their own, be able to stay somewhere if we were to leave them by themselves. In other words, they've got to be pretty independent; not completely independent, but pretty independent just because that's what the mission of the House of the Sycamore Tree is to help students be employable," Pettigrew said.

At the Transition Learning Center, they serve a wide range of individuals with disabilities. But House of the Sycamore Tree does not, she added.

Sing said the Transition Learning Center is "great, but we need something forever for our adults with disabilities."

Pettigrew stressed that parents need to start thinking about their long-term plans for their children with special needs when they're toddlers.

Speaking generally, Pettigrew noted that teachers push students to be as ready as they can possibly be for life after school.

"Sometimes they have extreme behaviors at school that they don't have at home and part of that is because we're making them do things at school that they don't have to do at home. Parents see that as 'what's that school doing to my child,' that kind of thing," Pettigrew said.

"Other things that happen (are), parents tend to really spoil their student with a disability ... Other parents do, too, but the thing is when they're spoiled like that then it's extremely hard for them to work. It's extremely hard for them, especially students with disabilities, and more specifically autism because they've learned that if I want it, I get it. No exceptions and that's real hard," Pettigrew said.

"They've got to learn the word no. They've got to learn that you don't always get everything you want every single time. It has to start somewhere," she added.

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