Educating children with disabilities can be difficult, but for anyone that is involved with the process, especially parents, it is one of the most rewarding experiences. Sadly, many parents feel like there are just no resources available to them. In addition to their loving, caring family at home, children with disabilities need professional support to meet the milestones that other children meet effortlessly.
So begins a fund raising letter from Belvue, Kansas Mom Jennifer Peros, in an effort to open a non-profit center in her rural Pottawatomie County community to serve disabled children, like her daughter Natalie, and their families.
Jennifer explains resources for kids like Natalie are hard to come by in rural Kansas:
“Exactly two years ago, my husband Nickolas and I reached out to this community…looking for support from local professionals and families in the same boat, and what we found was surprising and a bit heartbreaking: There is simply a massive shortage of professional support options. Therapists providing services through our local school are amazing, but they all say the same thing: the caseload is quite large and they cannot give to the children all that they wish to give. Our area has many children in need of guidance and therapy to help them in their education process, and we are so short on resources in this rural area.
Community resources for students with disabilities
“Our own daughter Natalie, who is about to turn 5, has now received therapy from No Stone Unturned in Manhattan for a year. Her tremendous improvement so far is such a joy! Every week, No Stone sees over 300 children from all over the state. Unfortunately, Natalie, just like many of these children, only received this care after being on the waitlist for a year, and she continues to be on the waitlist to receive the amount of therapy for which she qualifies. To add to that, she is approaching school age and will need more school-related therapy very soon. Where can families like ours turn to get all the much-needed professional support to help their children with disabilities? Quite frankly, many have nowhere to go.”
Jennifer is optimistic that an evolving partnership with a Missouri facility will provide opportunities for families in rural Kansas:
“My husband and I continue to search for answers with the support of many local families. We have been able to find a great entity in Independence, MO called Marian Hope. Marian Hope provides special education with a focus on children with therapeutic needs. At long last, a solution for our rural community which will meet the needs of the many children with disabilities has presented itself: together with Marian Hope, we are working toward opening a non-profit developmental center in St. Marys, KS, to provide education through therapy and peer support.
Throughout the last year, we have been fundraising in different ways to help make this project come to fruition. We have an account with the Wamego Community Foundation called Joyful Hearts.”
From where did the name “Joyful Hearts” come?
“First, our own daughter is named Natalie Joy which means “Birth of Joy”. She was born with Down’s Syndrome and needed open heart surgery to live. Her heart is so precious, and the amount of joy she exudes is unmatched. God puts children in our lives for a reason. When you slow down and engage with a child who has challenges, you see that the more you give to them the more joy they give back to you and the world around them.
“Second, children with disabilities are very capable. They just need a bit more aid to achieve the milestones the average child breezes through. These achievements are such a joy to witness! Sometimes, families as loving and caring as they are cannot provide the support which a child needs to flourish, so they turn to professional help. It is heartbreaking when this professional help is unattainable.”
The Peros Family enrolled Natalie in public school originally, but Jennifer says the services provided weren’t sufficient for their daughter:
“Our district was Wamego. We loved Wamego but our daughter was not walking, talking nor eating solid foods yet. I attended therapy with her one day a week and she had just her time one day a week.
“The school and the therapist were great! But when the summer hit all therapies ended. Three months is a long time for that age! So, I sought out more individual therapy, but we only found a physical therapist to take her. No Stone had her on the wait list for months, but we were not able to get in yet.
“When school started we fully enrolled her in St Marys USD 321 and she would get therapies there. She still couldn’t eat well, only signed and just started walking. I had asked to attend her therapy time but St Mary’s wouldn’t accommodate. It is hard to help your child at home when they are non-verbal if they can’t tell you what they are learning. I wasn’t impressed with the school at all for a handful of reasons, so we pulled her out after six weeks. The day after we pulled her out, No Stone had an opening.”
“What a child gets from a place like No Stone is amazing!! I asked USD 321 to work on our daughters eating. The special ed director told me they only work on education.
“At No Stone they did feeding therapy. She can now eat regular food without choking! She signs so much more now and repeats so many words! She’s walking, running and walking up and down stairs. The milestones she suddenly achieved was amazing!!!
She is currently receiving 2 hours a week of speech, 2 hours of Occupational Therapy (OT), and 2 hours Physical Therapy (PT) every week but she qualifies for 3 of each. We are still on the waitlist for more.
“Through the public school she was receiving 20 minutes of speech twice a week, 20 minutes of OT a week and 20 minutes two times a week of PT.
You see, not just in the amount of time she gets but also in the therapy, she gets so much more.
Although No Stone Unturned has been good for Natalie, the family has high hopes for a facility closer to home through Marian Hope:
“Between the waitlist at No Stone Unturned, the drive time which it is an hour one way for us and needing some school-type time too, we are pushing forward to make a difference and start something here with Marian Hope” says Jennifer.
‘They have a classroom model for therapy and I think it makes the most sense! I also love that they practice inclusion because the peer example is huge!”
Jennifer says her community has been generous with its resources:
“We did our first public fundraiser through the Wamego Community Foundation and raised $12,200….in three days! I do not know what amount we will receive from the match (from the foundation). I was hoping by setting the goal at $25,000 for this first fundraiser we would be safe to rent a space, use money to get necessary materials and be able to use some money to train some of the volunteers in the Montessori method because we believe that method is a great approach for all children.
“We will look to apply for grants and continue to fund raise but we just thought we have to start somewhere and we have to start now because we have no other options and we are not the only family looking for answers.”
We reached out to both No Stone Unturned and Marian Hope for comments and information on services offered, but neither responded.