The Nusbaums: How do we live this life?

“Why are you doing this to me?” 

That’s a question no parent should ever have to hear from a child, but Kelly Nusbaum found herself struggling for an answer as her daughter Sadie asked that very question with tears welling in her eyes. 

Kelly and Mark Nusbaum spent much of their early married life with busy careers in New York City.  When their daughter Sadie was born life changed.  The plan was to move back home to rural Smithdale, Mississippi in Franklin County where they would settle on Kelly’s family land. 

Sadie Is Diagnosed with Autism 

In fact, they did move home, but life did not go according to plan. At age 4, Kelly noticed that Sadie stopped talking.  She enrolled Sadie in a pre-K program in nearby Brookhaven and things went from bad to worse. Sadie had difficulty coping with the classroom environment and Kelly knew something was not right.  Kelly did some research and discovered that Sadie might have autism. She drove Sadie over two hours to Hattiesburg, Mississippi to a child behavioral psychologist where she was evaluated and diagnosed with autism. 

“As a mom, it was horrible,” Kelly remembered.  “I went through a grief stage where I had to grieve the child I thought I was going to have.  Everything changed with that diagnosis.” 

With little information and facing the very lonely process of navigating this new diagnosis, Kelly was overwhelmed with how to move forward for her daughter.  She began making regular trips to Hattiesburg for Sadie’s therapy, and as Sadie got older Kelly’s concerns about her daughter’s education grew.  There were few resources at home in Smithdale, and Kelly knew that Sadie needed a more specialized education that would meet her needs. 

Finding a School 

One of Sadie’s pre-K teachers told Kelly about Magnolia Speech School, a specialized school in Madison serving children with communicative disorders.  Kelly enrolled Sadie in Magnolia Speech School and began making the hour and a half drive for her daughter’s education, which eventually forced the Nusbaums to forego their plans to settle on their family’s land.  They sold their home and moved to Canton to be closer to Sadie’s new school. 

“That was a very hard decision to make,” Kelly said.   

 However, they began to see Sadie making progress in school.  

“Magnolia (Speech School) worked well for Sadie.  She learned how to function and by the time we left she was reading and writing,” Kelly said.  

Sadie later moved to a different local specialized school where she is currently doing well. Today, Sadie, age 12, is in the seventh grade.  

“She likes it,” Kelly said.  “She feels like she fits in and has friends there.  She’s comfortable and successful.” 

Sadie loves science, has a passion for horses, likes to read and, according to Kelly, loves to talk. 

“As a parent when you get this diagnosis for your child, there are so many questions.  What do I do? Who do I call?  How do I live this life?  It’s incredibly difficult because we have the regular worries of a parent plus 5 million more worries as a parent of a child with autism. Then when you add the amount of money it costs to care for a child with autism it’s exhausting.” 

The Nusbaums are spending roughly $14,000 per year for their daughter’s education. Because of the financial strain, they have had to make the heartbreaking decision to prioritize her therapies. 

“We can’t give her all the therapies she needs because it’s so expensive,” Kelly said.  “It’s so hard to have to choose therapies and not be able to give her all of them. I’m worried about her constantly.”  

Applying for an ESA 

While at Magnolia Speech School, Kelly learned about the special needs Education Scholarship Account (ESA) which allows families to use state funds to place their child in an education setting that better suits their needs.  The ESA, valued at approximately $7,829, can be used for private school tuition, therapies, and tutoring among other qualified expenses. 

“The ESA would be a huge blessing for our family,” Kelly said.  “What we are paying for Sadie’s school is basically the cost of a mortgage.” 

Kelly eagerly applied for the ESA hoping to get some financial relief, but six years later she’s still waiting.  Like the hundreds of kids who applied for the ESA, Sadie was waitlisted, and Kelly and Mark are continuing to bear the cost of her education. 

Not only is waiting difficult, but the entire application process for the ESA has been full of hiccups and heartbreaks.  One of the requirements to be eligible for an ESA is that students have an IEP (Individualized Education Plan), which is something that is only available through the local public school.  When Kelly initially applied for the ESA for Sadie, she sent in a service plan from Magnolia Speech School.  A service plan is similar to an IEP but is written by a private school. 

“Somehow Sadie’s application was approved by MDE (Mississippi Department of Education) and she got into the lottery for an ESA,” Kelly said.  “The second year we reapplied like you have to do each year and they kicked us out because they wouldn’t accept the service plan that they had accepted the year before.” 

Kelly returned to her local public school in Franklin County, where they were living at the time, to request an IEP for Sadie.  Sadie was given a “draft” IEP from the school district, which was not accepted by MDE, so she was not eligible for the ESA.   

Kelly’s next attempt for an IEP was through the CARES Schools,  which are non-public schools designed to meet the educational and behavioral needs of students who are not able to succeed in a traditional classroom setting. Students at the CARES Schools are placed there by their local public-school districts.  The CARES Schools wrote an IEP for Sadie, but MDE would not accept it either.  

“They told me they wouldn’t accept it because it was not written by the school district,” Kelly said with frustration, “keep in mind that the students at the school have been placed there by the public schools when they can’t educate them.” 

The Heartbreak of Changing Schools 

Desperate to keep her daughter in the specialized school that was working for her, Kelly was running out of options. By this time, they had moved to Canton, and Kelly’s last resort was to place her daughter in their assigned school in the Canton Public School District just so that they could get an IEP that was good enough for MDE.  

“I was terrified,” Kelly said.  “They placed Sadie in a self-contained special education classroom, which was not good for her autism, ADHD or anxiety.  She became aggressive and would cry all the time.  She didn’t understand why she was having to go to the school.  She was so angry with me, and she would ask me, ‘Why are you doing this to me?’ 

“Sadie’s behavior was escalating, and I was worried about her being taken advantage of.  There were kids who were screaming in her classroom, and kids asking her for drugs.  She didn’t understand any of it, and she was so angry at me.” 

Kelly was devastated. 

“I felt so guilty.  I wondered if I had done anything right at all,” Kelly said fighting back tears.  “No parent should ever have to answer a question like ‘Why are you doing this to me?’ and no child should ever feel like a parent is choosing to put them in a setting that doesn’t work for them.” 

WAITLISTED 

Finally, Sadie got her IEP, and Kelly reapplied for the ESA.  Her application was approved, and she was placed on the waitlist.  Currently, Sadie is number 151 on the list of 157. 

“The way we are going, Sadie will finish school before she gets an ESA,” Kelly said angrily.  “We’ve been trying since Sadie was six years old to get an ESA so we can educate our daughter.” 

With each passing day, Sadie moves closer to finishing school, and Mark and Kelly dip deeper into their pockets to pay for her education. 

“I wish lawmakers could understand how hard this whole process is for us,” Kelly said.  “I worry about things like if she can go to college, what will happen to her when I’m not here anymore, and if she will be self-sufficient.  We work so hard to try to make those things happen, but it takes everything we have.” 

Kelly’s hope for her daughter as she gets closer to finishing school is that she will be happy in her life.  It may take nearly all of their income to provide for their daughter’s education, but the Nusbaums are committed to it. 

“We just want for her what all parents want for their kids.  We want her to live a happy life and be able to pay her own way.”

Click here to learn more about the ESA waitlist.