The Most Common Difficulties Parents of Children with LD Face
Negative interactions with the school system
Difficulty getting their children enough help
Anger/frustration with the schools leading to the erosion of trust in professionals in the LD field generally
Worries and anxiety about their child
The time and effort it takes to have a child with LD, which sometimes impacted finances and careers
While these were the most common difficulties, there were various ways that having a child with LD affected parents, depending on where each parent was in their journey and individual differences (such as circumstances and personality). For example, while not as common, some parents found that having a child with LD had a profound effect on their family life.
Selected participant quotes on difficulties faced
“The biggest challenge was dealing with the school system. You know, trying to get the school system to view her in a way that was not deficit-based, that's the biggest challenge [and] it continues to be to this day: to view her as a viable student and learner.”
“Lack of HOPE that my child would be okay in the long run from both school personnel and outside psychologists. I was told to 'accept my child's limitations' and that 'this child will never go to college.' Both statements were made to me by professionals when she was in first grade. Fast forward to the end of story with a happy ending...my daughter went to college, received a scholarship for music and will be graduating in May 2015 from college…As her parents we never gave up hope when the experts told us to.”
“Frustrations with getting appropriate school services is a huge problem, despite allegedly living in one of the best counties in the country for academics… I've spent $30,000 out of pocket, took out a 2nd home mortgage and ultimately lost my home to Fannie Mae, all trying to fund tutoring for my kids. I'm out of money and out of hope. I just can't wait for [my kids] to be done with the joke of a school system and realize that they can be great individuals on their own. My children have worked extremely hard but will most likely not be able to pass standardized tests required for a high school diploma. So they've learned they can work twice as hard as the next person and still not add up…. I am so sick and tired of this fight for their right to learn. It makes me sick.”
“I’m not upset about the diagnosis now, but I will say that every year I have anxiety about what the next year is going to hold, about where I should put him in school, what resources are going to be available to him, what accommodations, how hard is the teacher going to be to get along with, will they understand it? Every year there’s been anxiety of trying to get that balance right.”
“I'm always second guessing myself and my decisions around my child - is it the most accurate diagnosis? Are there things I'm not thinking about? Is it the best remediation I could give my child? How much is too much for my child?”
"Because my child is twice exceptional, he faces difficulties on both ends of the spectrum with teachers and administrators who refuse to follow his IEP because he is 'faking it' and is 'smarter than he's acting' OR that he isn't smart enough or performing on tests well enough to get harder content.”
“The time I have spent researching, advocating and assisting my children is full time job. However, I have a full time job. It can consume you and your family.”
The Most Common Support Needs
Most parents primarily wanted education about LD, including learning about:
Resources, interventions, and services available for children with LD
LD basics and a guide to understanding all the information available
Technology that could help kids with LD
How to navigate the school system (including legal issues)
Referrals for local services
Parents were also interested in some specific types of parent-skills training, namely learning how to help their child with:
Self-esteem
Social skills
Self-advocacy
Parents were also interested in certain emotional support needs. In this category, parents were mainly looking for:
Hope that their child would be okay
The opportunity to help other parents
While there were commonalities, parents stated that their support needs changed depending on where they were in their LD parent journey and based on individual differences.
Also, some parents just wanted the school system to change rather than getting support.
Parent Opinions about Support Groups
Overall, 71% of the parents in the study were either interested or very interested in attending a group. They generally preferred a group to be:
Structured
Open (i.e. no commitment to attend)
To occur monthly with sessions ranging between 60-90 minutes
While most parents preferred a professionally led group (54%), there were many parents who would prefer a parent led group, sometimes due to distrust of professionals.
The main concerns about groups were linked to worries about group dynamics (group getting too negative or someone dominating the group) and mistrust in the schools and LD professionals.
Parent Messages for LD Professionals
While parents in the study had a lot of ideas about how the schools and LD professionals could better understand them and work with them, the main message was for professionals to:
Be trustworthy (i.e. be well educated, honest, and live up to the title of “professional”)
Show empathy for what parents and their children go through
Communicate respect for parents’ knowledge by treating them as team members
General Recommendations for LD Professionals
Access up-to-date training about LD
Address parent distrust/anger by actively building trust
Consider that past negative experiences can impact how parents interact with you
Remember that for most parents, LD and special education terminology are like a foreign language
Educate parents about LD and how the school system works
Give parents time to process information on an emotional level if possible
Be empathetic, respectful, and use a team approach
