Ingrid and Greg

writerJoan is an intelligent, brisk, businesslike woman with warm eyes and a ready smile. She is proud to tell everyone that her daughter, Ingrid, has just recently graduated, with a degree in Journalism, and plans to be a writer. Despite a lifetime of setbacks, Ingrid is the perfect image of a successful young woman.

Born with spina bifida[1], Ingrid has never let that slow her down. Joan would not permit it. She has been a fierce advocate and ally for her daughter, never letting her use her disability as an excuse to not live up to her ability. From the time Ingrid was little, Joan made sure she had every opportunity to experience all that life has to offer.

When Ingrid was a toddler, an occupational therapist came to their home to work with her as she learned to walk with AFO[2] braces and crutches. These sessions were hard work and Ingrid often cried and begged to stop. Joan remembers how difficult it was for her to restrain herself from jumping in to help Ingrid as she struggled. But her restraint paid off. Joan’s advocacy and can do attitude has helped to mold Ingrid into a person with high self-efficacy and determination. Despite paraplegia, Ingrid played on a national basketball team in college and regularly rock climbs, skis, water skis, rides horses, and bikes. She is a formidable athlete with rock hard upper body strength. To complement her physical abilities, she also has a gifted intellect and outgoing personality.

Her younger brother, Greg, is also disabled, but his is not immediately noticeable. Greg has severe sensory processing disorder, which has often defied Joan’s efforts to normalize her son’s life. From the time Greg was little, he would scream and try to run away from any sensory overload. He hated to be touched and avoided interactions, with people outside his family, as much as possible. Visits to the doctor or dentist were fraught with outbursts and trauma. The two weeks Greg was in preschool were extremely difficult for everyone and ultimately resulted in the preschool telling Joan that they could not accommodate him.

Joan told her husband, Robert, that she thought Greg might have autism. They talked to their pediatrician and scheduled testing with a child psychiatrist at their local hospital. Test results were inconclusive. The psychiatrist who tested Greg told Joan that he had some autistic-like behaviors and might have Asperger’s, but he wasn’t sure he actually had autism. When Joan told the doctor that his older sister was gifted and wondered if Greg might also be gifted, the doctor told her he didn’t see anything that indicated giftedness.

Joan felt that her observations about Greg’s abilities were not heard. “Telling parents they are part of the educational or medical team is just lip service.  Professionals don’t actually treat parents as a full team member when they are deciding the child’s fate.” Joan didn’t feel supported by the doctors and didn’t know how best to advocate for Greg. She was determined that he would have the same opportunities in life she had carved out for Ingrid.

As Greg reached kindergarten age, they decided to enroll him in their local public school in hopes that whatever his disability turned out to be, the school could support him. While Ingrid’s experiences at school had not all been positive (bullying, lack of accommodation, and underestimation of her abilities), Joan and Robert did not want to consider private schooling or homeschooling.

Joan and Robert had always planned on sending their children to public school, as they were firm believers in the public education system, and felt that they had both received a good public education. But they had been frustrated with Ingrid’s academic experience and Joan felt she had to continually advocate for her. “Ingrid has a physical disability and that was all they saw. Whenever she was tested academically, they’d be so surprised at how smart she was, like how could a kid in a wheelchair possibly be smart?  Most people look at children who have a physical disability, especially if it is paired with a learning disability, and they don’t think they can be gifted. Right away they think there is no way they can be mainstreamed into the regular school setting. But I wasn’t going to let them peg her as incompetent. I made sure she was tested for the Gifted and Talented Education Program when she was in third grade. I knew she was smart; she could read better than any of her classmates, but people just couldn’t seem to see beyond her chair.”

With Joan’s continued advocacy, Ingrid’s elementary teachers began to let go of their assumptions about her abilities.  Because of her past success, and despite Greg’s less visible disability, Joan believed that she would be able to handle whatever advocacy was needed for Greg as well.

Greg started kindergarten at the same school where Ingrid was a fifth grader. Right away, things got rocky. Greg would scream and cover his ears if the other students got too loud. He refused to go out to recess, and when he was forced to, he would hide in a corner and cry. He told his teacher the lights in the classroom were too loud and if he was bumped or touched by other students he would forcibly push them away. Since Greg entered kindergarten already reading and writing, he was bored by the work, which exacerbated the problems.

colorAs the weeks wore on, Greg began to be ostracized and bullied by the other children. Joan was trying to figure out what was happening with Greg and doing her best to advocate for his needs. She had met with Greg’s teacher and principal several times, including a formal student study team meeting with the school psychologist. The decision was made to have Greg go into the psychologist’s office during lunch recess for one-on-one play therapy with the psychologist two days per week. The other three days he was monitored and assisted during recess by a classroom aide.

These measures helped with the bullying and social interaction, but Greg was still struggling with overstimulation in the classroom. The teacher moved Greg’s seat to the end of the table nearest the aide’s desk and had him wear noise-cancelling headphones while in class. This seemed to help Greg settle down during class time, but also isolated him from his peers and added to his being seen as different. “The other kids did mean things, excluding and harassing him, all the types of bullying stuff that kids might do anyway, but the level is exponential when it is directed at a kid with disabilities.”

Joan advocated for Greg to be given more challenging work, so the teacher agreed to let him bring books from home to read and gave him a first grade math workbook. All of these accommodations helped Greg to function a little better at school, but Joan felt that, overall, school was not a positive experience for him.

Joan admitted that it felt like deja vu. She recalled when Ingrid was in school, she had to fight hard to get the school to comply with accommodations that were stipulated in the ADA laws. For instance, there was an 18-inch high concrete wall all around the play equipment in the playground. Ingrid couldn’t get to any of the equipment or the sandbox because they were all within the wall. Also, the classroom doors had a 6-inch step up into the classroom that Ingrid had to be helped over every time she came in and out of the room.

Joan had to sue the school to get the ADA violations corrected. Because it is a small community, everyone in town knew that the school had to spend money that was earmarked for other programs, to correct the violations. Joan confided she felt like the town pariah because there was resentment over the loss of funding for some other pet projects. Parental resentment filtered down through the children and Ingrid had been a target of petty bullying when she was younger.

Now Greg was also a bully target, perhaps for different reasons, but he was picked on just the same. Despite her frustrations, Joan continued to work with the teacher to try to help Greg have a better school experience. When Halloween rolled around, Greg wanted to dress up as Sherlock Holmes for the school parade.

Joan recalled, “I arrived for the parade and I saw that his big magnifying glass had broken and his deer stalker cap was missing. He was just wearing his coat walking around the circle on the pavement and he looked like the most world weary, depressed human being. I’ve never seen a child with that lack of joy. I took him out of school two days later.”

Joan decided to work part time from home so she could be the primary homeschooling parent. Joan and Robert were both very nervous about pulling Greg out of school. They worried that it would make him odd and antisocial. Robert thought homeschooling would set him up for failure, but admitted that something about being at school was sucking the life out of his son. They still hadn’t been given a definitive diagnosis for Greg, although autism was considered the most likely disability.

Joan confided that listening to doctors talk about her children has always been a negative experience. “When Ingrid was born, various doctors told me she could never learn a second language, that she would struggle with math, that her memory would be impaired. They start judging and deciding your child’s fate at birth. I wish they could see her now. She graduated university with honors and has a minor in American Sign Language.”

With Greg, the prognosis was not as dire, but his pediatrician clearly believed he was impaired. When Joan told their doctor that she was going to homeschool Greg, he was not supportive. He told her that he would be better off in a public school where he could get supportive services for his disability.

To compensate for what her doctor perceived as a lack of support, Joan applied the same vigor to homeschooling Greg that she had to advocating at school. She researched and found a social skills therapy group for autistic children, hands-on classes at a local science museum, an occupational and physical therapist, and a homeschooling group that met a few miles from her home.

She took Greg to his first class at the museum, but the noise level and crowds at the museum made it difficult for Greg to cope, so Joan dropped the class. The homeschool playgroup garnered a similar reaction; the group was loud and boisterous and Greg did not want to return. When he attended the autism group, Greg did not fit in well with the other children. While she couldn’t put her finger on the exact reason why, Joan could tell that it wasn’t going to work. She began to despair that she had few options for Greg.

libraryYet, when she worked with him one-on-one at home, she was pleased to find that he could read and comprehend much higher-level books than she had originally thought. She knew he was a very advanced reader, but she didn’t realize how well he understood both higher-level fiction and non-fiction. Joan began taking him to the library and helping him find books on topics of interest. She thought that would cover any reading requirements.

To deal with math, Joan found logic and math games in books like, Family Math, and programming tutorial sites like, Scratch, that Greg was delighted to try. Greg had always hated to write, the physical act of writing was extremely difficult for him, so Joan did exercises recommended by the occupational therapist to help build his fine motor skills. Each day Greg seemed to be able to do more than the day before. Robert and Joan were committed to offering Greg a comprehensive curricula and ample opportunities to increase his knowledge. Greg seemed happy to oblige their efforts; Robert and Joan were often surprised at how fast Greg was learning.

As Joan continued to research homeschooling, she found a site for gifted homeschoolers. As she read other people’s comments, she began to realize that Greg might be a lot smarter than she and Robert ever considered. Joan, a civil engineer, began to teach Greg increasingly difficult math concepts and was thrilled to see his excitement about learning grow.

They began to enjoy learning together. Joan also introduced higher-level science to Greg. When Greg discovered chemistry he was hooked. Within a few months of reading adolescent books on the topic, he was asking for more advanced information. “The whole process of trying to find a way to feed his intellect while avoiding things that triggered his sensitivity put us on a journey of mostly unschooling; which has been amazing because it let him be himself. He no longer had to try to force himself into situations that really didn’t fit.”

Unschooling is homeschooling without a set curriculum, so it required Joan to expend a great deal to time, energy, and resources to help Greg fill his intense desire to learn. “I basically had to build this unique education from the ground up. We had to fit together bits and pieces, trying to find appropriate books and materials, trying to afford all the books and materials, it was pretty stressful.”

But it did work for Greg. He began to accelerate rapidly through math and science curricula and was much more calm and relaxed at home. Joan complained that the hardest part about his behavior at this point was getting him to stop learning and go to sleep at night.

As she concentrated her energies toward homeschooling Greg, Joan was hard-pressed to contribute equally at school for Ingrid. She conceded that she was grateful she had helped her daughter to become strong and self-advocating, because Joan was consumed with getting things together for Greg that whole first year of homeschooling. The second year of homeschooling was more settled, which was a relief for Joan, as Ingrid was starting middle school that year.

She once again found herself advocating to get Ingrid admitted to an advanced language arts program. “It is hard to advocate for your child. You are seen as being overbearing and pushy, especially when you are advocating for their intellectual needs. Mostly people saw Ingrid’s disability and then there was no expectation of any thing more from her. Even when she produced work that was above and beyond, they never saw her abilities.”

This seesaw pull between homeschool and public school for each of her children was exhausting for Joan. She needed to work part-time, in order to afford Greg’s therapies and Ingrid’s programs, which added to her lack of time and energy. Most of the time, she did manage to balance everything, but changes and challenges were ongoing. Her pediatrician, and a developmental pediatrician, ultimately decided on a diagnosis of sensory processing disorder, but continued to tell them that Greg might also have autism. Joan felt like she had to continually remind the doctors that her son was also highly intelligent. At that time, she had not heard of twice exceptionality, nor had anyone she knew, so Joan didn’t have any way to explain her son to the doctors.

Joan grumbled, “I don’t think people understand how difficult it is to diagnose our kids, the disabilities keep them from showing up on the radar. I think there are a whole lot more gifted kids with disabilities out there than anybody knows.”

Greg continued to work with physical and occupational therapists and he was making progress with sound therapy and proprioceptive[3] work. While she loved many of the therapists who worked with Greg, Joan lamented, “Most professionals seem to dismiss that you are the person who lives with your child and have deep understanding of what your child needs and how they learn. You are completely disrespected despite the countless hours you have spent with your child, struggling to learn what is successful and trying everything to find what works.”

Joan confessed she spent a good portion of her free time researching her children’s abilities and disabilities, and figuring out how best to help them succeed. She cautioned, “You have to keep working to find the pathways, keep looking for new paths until you find one that works, because the medical and educational communities will not keep looking for a solution.”

dogAnd search she did. After doing her own research on sensory processing disorder, Joan got the idea of a service dog to help Greg deal with his anxiety around sensory overload. The dog was more work for Joan, but she felt it made a big difference in how Greg approached the world. When he needed to go out in public, the dog had a stabilizing effect; Joan explained it was almost like the dog was a buffer between Greg and the sensory stressors.

But Joan has had to deal with issues about the dog with friends and family, who thought she was taking advantage of the service dog system because Greg didn’t have a serious enough impairment to need one. She dealt with this reaction in public as well. At an historical site, she was told the dog could not come in. When she pointed out that it was a service dog, the attendant thought she was trying to pull a fast one because he could see that “your kid is not blind.” Joan was exasperated at how many people have misperceptions about sensory processing disorder. When Greg did have a melt down, people assumed it was because she was not practicing good parenting. Except when she did practice proactive parenting, by getting him the dog, she was judged for that, too.

Over the next few years, Joan continued to support both children as they grew in their very different schooling spheres. Yet, across both homeschooling and public schooling, she found that people, in general, were more empathetic about her children’s disabilities. “If I focused on how gifted either one was, people didn’t want to hear it. Yet I could talk about their disabilities and everyone was fine with that. If your kid is delayed, you get so much more sympathy.”

As her children grew, Joan continued her attempts to educate people in her community and advocate for both children. She remarked that it was more than a full time job to support two kids with special needs, who were in two such distinct educational arenas.

Joan managed to juggle all of her children’s schooling needs. When Greg entered his middle school years, he was basically attending college by utilizing open online courses from such schools as MIT and Stanford. The early intervention Joan spearheaded had paid dividends as Greg matured. He still had difficulty with large, crowded venues, but his anxiety around them was lessened now. He knew he had the coping strategies to compensate for the overload.

When Joan finally learned about twice exceptionality, she exclaimed it was a light bulb moment, “I finally had something to hang on to, some way to educate people about why my kids were extraordinary. Especially with Greg, I finally had a way to explain that he wasn’t a bad kid and we weren’t bad parents.”

Joan observed it was also a relief to have a diagnosis that actually fit what she knew to be true, about Greg in particular. At last, her children had an explanation that gave them a sense of normalcy and a community of peers. Joan felt this knowledge was going to help life get better for everyone from that point on.

graduateWhen Ingrid graduated from high school, Joan was excited for her to experience a college education. She felt that having the 2e label, in a university setting, might help people see Ingrid’s abilities, not just her disabilities. Unfortunately, as Ingrid began her university experience, she found that many of the same issues followed her into higher education. Joan grumbled, “Our daughter has people talk down to her all the time, literally because she is in a wheelchair, but they just don’t see her giftedness. I hate to say it, but at her university, she was still in a community of mediocrity and didn’t fit in.”

But Ingrid is her mother’s daughter and she didn’t let that stop her. She applied for internships, awards, grants, and mentorships. She became an activist for disability rights and took her arguments to the state courts, which ultimately resulted in a change in the laws. She joined a sorority and, over her tenure there, initiated programs for disabled members and educated her sorority sisters on disabilities issues and protocol.

While both of their children are now considered successful adults by any measurement, the journey there was long and difficult. Robert and Joan never really felt they had support from any of the professionals who should have helped to ease their parental insecurities and provide expert guidance. Joan recounted, “Looking back, the thing that caused me the most stress was constantly being told what my children could not do. People only saw the limitations of the disabilities, not that my children have potential or recognize the possibilities of what can be done.”

 

[1] A type of birth defect called a neural tube defect. It occurs when the bones of the spine (vertebrae) don’t form properly around part of the baby’s spinal cord.

[2] Ankle Foot Orthosis, a device that provides support from below the knee down to the foot to provide stability and support.

[3] Relating to stimuli connected with the position and movement of the body within the environment.