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Resilient Parenting for Kids with Hidden Disabilities

Written By: Veronica Crawford, MA and Justin Coller, BS

Veronica & Justin presented this topic on Thursday January 15th at 6:00pm, at the Phoenix Autism Speaker Series, hosted by Life Development Institute. Registration is complimentary, but encouraged to ensure participation in future events.
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Many parents struggle to acknowledge that something is wrong, different or abnormal with their children. It is often a grieving process. Defining “normal” as it pertains to an individual is frequently defined by the societies in which we live.

Therefore, it often becomes a reflection of either what we passed on to them genetically or the societies in which we were raised and live in today. In addition to a complicated neurology, these factors beat parents and their kids down far too much.

Instead, let’s stop thinking that you or your kids did or are doing something wrong and review some examples and provide solutions that might lead your kids to becoming more successful!

The world is full of many complicated issues. There are many people in the world that will not understand what their children will be facing when they become adults and how having a disability will affect them.

In addition, parents may not know why it is important for their kids to understand their rights as a person with disabilities, how to advocate for themselves and why becoming empowered to do so makes them become stronger and more confident as an individual.

Many people do not know that I am not only a person with hidden disabilities, but also raised two successful children who are now adults with hidden disabilities. Therefore, for the purpose of this blog, I am going to use them as an example in the hopes that it will help those of you reading some help with your own child.

Throughout their lives and from a young age, I worked very hard to help my children understand how having disabilities affects them, from the perspective of interaction with others as it pertains to their school work and social life. I had them attend their IEP’s, those annual meetings with teachers and other professionals (once old enough to understand) and reviewed diagnostic outcomes. In addition to having discussions about the things we were planning to do, this helped challenge them to take calculated risks. This significantly influenced them in becoming the confident and successful people they are today.

While my kids were diagnosed with some similar disabilities as myself, each has their own unique profile. My son is 31 years old and is a Marketing Manager with a Bachelor’s in Marketing. He is diagnosed with Asperger’s (actually High Functioning Autism), ADHD (Attention Deficient Hyperactivity Disorder) and Learning Disabilities (LD).

Because Justin was diagnosed so young (at 18 months with Autism), we had a head start with him. It was a difficult road requiring speech and language, occupational therapy, physical therapy, behavioral interventions, social skills training and skills for learning disabilities and ADHD.

He was in both private and public schools. He was really never social with other kids. He did have a couple of friends once in junior high and high school, but was mostly comfortable with adults.

He began to attend his IEPs, I sent him to camps, I got him involved in Civil Air Patrol and he attended meetings with other kids in the evening who had totally different disabilities than himself. I also placed him in environments with non-disabled peers so he could learn stronger social skill and be less likely to mimic behaviors.

I pushed Justin. He had his rituals and his need for a sense of order, but over time, I along with the adults in his life such as his stepfather, Rob, taught him how to relax, how to joke and how to have some fun. Justin learned that work was the answer for him. Starting in high school, he put all his effort into his 30 hours per week job while attending school full-time and we let him. We knew it was good for him and he thrived.

He became a manager at a large movie theatre at only 18. We let him buy a car that he earned with his own money. I was afraid he would make poor decisions, but I also knew he had to grow up. He did make some poor choices and he did grow up and he learned important lessons in life. Today he is a leader of others with similar disabilities!

My daughter who is 27 was diagnosed with Non-Verbal Learning Disabilities and also ADHD combined type. In addition, she has a MSW (Masters in Social Work) and works as a hospital Social Worker.

My daughter was also diagnosed as a child, but as the article states, this disorder is not recognized as a true condition, so in fourth grade she had to still struggle her way through to that grade before help really arrived. I always knew something was amiss with her from about second grade, but it wasn’t until that time that NVLD was introduced.

Once in fifth grade she was also diagnosed with a disability in math, written expression and reading comprehension. At that time, an IEP was developed. Since she was in the fifth grade I began to introduce her to the process, though she was a bit more reluctant.

This was a difficult age. She had new friends and she was embarrassed about this part of her life. She attached herself to the smart kids, the kids who were popular. She was cute, verbal, smart and highly motivated. I had her in ice-skating and she was really good, but in school she struggled with some subjects and she knew she needed the help.

Both kids received accommodations all the way through the formal education.   They also elected to receive accommodations throughout college. My daughter was initially more of a risk taker than my son and she immediately set off for college. Once she had her job after graduate school as a social worker, she decided she did not need accommodations. She self-accommodates.

My son received accommodations in the workplace. Both of them take medication for ADHD. From this journey as a child into adulthood, both have become confident individuals who are not afraid to disclose (talk about it to others) their disabilities at a time that is appropriate for them personally.

Appropriate is a key term when and how to disclose to an educator, employer, a friend or even someone they are in a relationship with. Self-Advocacy is perhaps one of the most critical skills a person can learn, especially those who have a disability.

My daughter was a bit easier to work with as it pertained to the social skills area. She did not have trouble making friends, is beautiful and popular. As an adult, she finds it a bit more difficult. This is not uncommon for and adult with NVLD, however, she works hard and independently and is successful in her work. Once personal relationships are developed, she does well although some nuances still remain difficult.

My son still has most of his friendships though work. He and I share that in common. There is nothing wrong with that as we chose a field that lends itself to that type of relationship building.

In all, my children are happy and successful people who put forth much effort, overall they have outgoing attitudes and a beautiful love for others and most importantly, they live their lives as anyone else would. Some days good, some days challenging, but having coping skills and knowing how to handle things is what we hope for as parents, and they both possess this skill. Most of the time!

So what would I say to parents that will help them not only get through their day as they raise a child with any hidden disability or have a young adult who is still struggling or even maybe not, but you just simply worry a bit!

I would say this do parts of it, or all of it, whatever applies to you and yours you love:

  1. Ensure that when they are ready to be a part of the team that makes decisions about their education, they are a part of it. Prepare them, help them ahead of time with talking points in whatever learning manner that is best for them.
  2. Make sure your kids understand their disability and how it pertains to them and their learning, their social skills, their life. Integrate their strengths into the discussion. Use examples of others who have been successful as this will help them to digest this often difficult message.
  3. Ensure diagnostics are current and up to date, (at least every three years) make sure as soon as you suspect something is amiss that you seek diagnostics by a qualified professional. Either a developmental pediatrician, a neuropsychologist, a educational consultant (for a variety of services), a psychiatrist or psychologist or even a disability advocate. All can guide you to the right experts.
  4. Be patient with them and don’t force them to have a multitude of friends, one or two are fine, and don’t judge their friends. If they have some strange behaviors like your son or daughter (they are into Star Trek), remember there is a balance that you can help create and teach them they can have both. Everyone has a hobby and all you have to do is look at the millions of people who are into sports to see that!
  5. Teach your kids empathy for others and get them involved in a cause. It doesn’t matter what the organization is, so long as they are giving back. These things not only help them to see the other side of the world, but they build work skills, social skills, organizational skills, etc.…
  6. Don’t allow your kids to be absorbed by the media (no matter what form). Take them on hikes, out biking, get them a pet, and take them out to exercise, take up a sport or even chess. Find another interest for them that helps them to expand their options and opinions of the world.
  7. Give them chores to do, even if it is something minor. Kids need structure. Give them an allowance and teach them the benefit of having that allowance, help them to budget their money and don’t make it a punishment, but make it a reward toward something they really want.
  8. Expose them to the arts, expose them to furthering either their education or introduce them to people who do a job they may want to do one day. Help them prepare questions to ask that person (once in Jr. High at minimum).
  9. Sit down for dinner with you kids once and awhile, family discussions are important, so are table manners. How else are they going to get these skills?
  10. Demonstrate hard work yourself as kids learn from actions not  words, teach them as much as you can about social skills, life skills and how to manage stress and anxiety.
  11. Most of all, realize it is not your fault. This is neurobiological and no matter how it happened, it happened. Grieve as it is okay. Allow them to grieve and at the same time, remind them that we all have gifts. Love them unconditionally and allow them to grow, take risks, learn from their mistakes and try your best to not hover once they leave the nest. Individuals with hidden disabilities are no different than anyone else. They have the same wants, desires, hopes, and dreams. Yes, they are more venerable, but really when it gets down to reality, aren’t we all?

For more information:

IEP/Individualized Education Program

High Functioning Autism

Attention Deficient Hyperactivity Disorder

Learning Disabilities (LD)

Non-Verbal Learning Disabilities

Accommodations

Self-Advocacy

Posted by Life Development Institute

This has been a special needs program update from Life Development Institute. You may also click here to read the original article on the main program website.