Parenting a Child With a Disability and Honest Communication – Do You Ever Get Sad?

We were ready for a weekend away. A team of moms had gone out of town to do a presentation at a conference. For a few of the ladies, it was the first time away from home and needless to say, they were a bit apprehensive about leaving their family.

For one mom in particular, there was a concern for her son who had Autism and a seizure disorder. He had not had a seizure in over a year so she was confident that he wouldn’t have one while she was away. At the same time, she was anxious of the chance that he would have one while she was away. She carried most of the responsibility for matters related to her son’s health and she didn’t want her husband to feel stressed if a seizure did occur.

On the last day of the conference she received a call from home. The worry in her voice told us that something was wrong. Her husband called to let her know that indeed, their son had a grand mal seizure. With patient expertise, she guided him on what to do until she returned home the next day.

We could sense her grief and she expressed her feelings of guilt and remorse for not being home when it happened.

A couple of days after our return home I called the family to see how their son was doing. Mom was out with one of her other children so I spoke to dad. He said that his son was slowly feeling better however he was very tired and lethargic.

Then he said, “Can I ask you a question?”.

“Of course”, I responded.

“Do you ever get sad?”, he asked.

“Sad?”, I repeated.

“Yes, do you ever get down or depressed?”, he inquired.

“Well, I feel helpless when my son is ill and I do get sad sometimes, yes.”

“Okay”, he replied, “Because last night I didn’t feel like eating dinner. Everyone was asking me what was wrong but I figured that they should know what was wrong. My eight-year-old son has Autism and he had to have a lot of medication because of a seizure. Now he can’t walk and for a few days, I have to carry him around.”

“To me, that’s very sad”, he explained. “I got up from the table and went to rest in my room and now everyone is upset with me.”

“Did you tell them why you were sad?” I asked.

“No”, he replied. “My wife has enough to worry about and I didn’t want to upset her any further.”

This was a defining moment in our conversation.

“Can I offer you my point of view, a wife’s perspective?” I asked.

“Sure”, he said.

“I know that you want to protect your wife’s feelings by not telling her how you feel because you don’t want to create additional stress for her. “

“That’s right”, he affirmed.

“When we don’t communicate our feelings and we emotionally withdraw, we can actually cause more stress and anxiety for our loved ones. It creates tension and misunderstanding. You may leave them wondering if it was something they said or did that is causing your grief and unhappiness.”

“Oh”, he replied. “I never thought of that.”

“We may feel vulnerable and exposed when we have candid conversations, however, it is important to be open and honest so that we can understand each other’s perspective. That is how we learn and flourish in our relationships.”, I offered.

“Otherwise strain and hostility may grow, putting the relationship at risk.”

“That makes sense”, he said. “Thanks.”

Whether we are parents or we are in a supporting role, it is crucial that we communicate openly and honestly. Otherwise tensions mount, misunderstanding occur and unnecessary conflict may arise.

By sharing perspectives, we can strengthen our connection and find a balance that works for everyone, especially for the person you are teaching, caring for or supporting.

What Are Functional Skills And Why Does My Child With A Disability Need Them?

Are you concerned that your child with a disability is not learning

academics at a grade and age level pace? Have you thought that your

child may benefit from a curriculum of functional skills? Would you

like to learn about a resource that can help you learn more about

functional curriculums for your child in special education? This

article will discuss functional skills, functional academics, why your

child with a disability needs them, and a resource for more

information.

Functional skills are defined as skills that can be used everyday, in

different environments. Functional skills focus on different areas

such as home (cooking, cleaning etc) family, self help skills

(bathing, brushing teeth, dressing, grooming), employment, recreation,

community involvement, health, and functional academics. All students

with disabilities will benefit from functional skill training, to help

them in their adult life.

Functional academics are also important for children with

disabilities, who may not be able to learn age and grade appropriate

academics. Functional academics are defined as academic areas that

will be used by the student for the rest of their life. For example:

Reading (read signs; stop, go, mens, womens, read a recipe). Math

(money, grocery shopping, making change, budget). Health (grooming,

oral hygiene, plan healthy meals). A wonderful resource to learn more

about functional skills, and functional curriculums to help children

with special needs is the book entitled Functional Curriculum for

Elementary, Middle, and Secondary Age Students with Special Needs.

The book is Edited by Paul Wehman and John Kregal, and is a resource

that you will use again and again.

Your child with a disability needs functional skills because these

skills will have meaning for your child, and will help them be as

independent as possible, as an adult. For example: Every child eats,

and being able to cook or prepare simple foods will help them be more

independent. If children learn simple household chores, these skills

can be turned into job skills when they get older. For example: My

daughter Angelina, who has a severe disability, learned how to fold

towels when she was in elementary school. When Angelina entered high

school she had a job folding towels at the high school pool. Because

Angelina already had the functional skill of folding towels, the

transition to a job folding towels was pretty easy. Angelina also

learned that when she worked hard folding towels, she was paid. On pay

day, she was able to spend the money that she made at her job.

Learning functional skills that can be turned into work is critical

for all children with disabilities. They will gain pride by being able

to work, and will understand the connection between work and money.

By learning what functional skills are and why they are important,

will help your child as they grow into adulthood. Do not be afraid to

bring up functional skill training for your child, when you are

participating in IEP meetings. Your child is depending on you to help

them be a happy fulfilled adult!

The Mental Health of Families That Have a Child With a Disability: 10 Things That Make a Difference

There is a lot of information and activities designed to increase awareness and understanding of mental health issues and to reduce the stigma that often goes along with it.

What about the mental health of families that have a child with a disability?

According to the World Health Organization (WHO), mental health is defined as “a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.

Your mental health is affected by numerous factors from your daily life, including the stress of balancing work with your health and relationships.” (Canadian Mental Health Association)

While most parents will say that their child has brought tremendous joy to their lives, it is no secret that the responsibility of having a child with a disability is way beyond the normal stresses of everyday life.

Over the years, I have had the privilege of speaking to many parents. Overwhelmed, exhausted, isolated, afraid, anxious, worried, sad, stressed, upset, angry, frustrated, drained, weakened and shattered are but a few emotions that parents say the experience each and every day.

There are options which provide families with a short break such home support and respite programs however the funding for these programs is relatively minimal compared to the number of hours that parents devote to the care of their child.

Lack of sleep, frequent visits to the doctor or hospital, interrupted careers, strained relationships, dropped friendships, and financial pressure are all examples of the constant and non-stop stress that a family goes through.

Not to mention the attitudinal barriers that families encounter in places at school, the playground, the hospital, the restaurant, the sports team and the list goes on.

Furthermore, parents are not very good at asking for help. In her book, Daring Greatly, Dr. BrenĂ© Brown states that “going it alone is a value we hold in high esteem in our culture.” She also states that “For some reason we attach judgment to receiving help.” I know that my husband and I were reluctant to receive help when it was initially offered and yet looking back, there was absolutely no way we could have done it without the support from our family, friends and funded assistance.

We are informed about the destructive effects on our health from sleep deprivation, chronic stress and secondary traumatic stress disorder as it relates to people on shift work and professional caregivers however we do not ever hear about the devastating effects on families that have a child with a disability.

The Mayo Clinic explains that the long-term effects of chronic stress can disrupt almost all your body’s processes. This increases the risk of many health problems, including, anxiety, depression, digestive problems, headaches, heart disease, sleep problems, weight gain and memory and concentration impairment.

What can be done to preserve the mental health of families that have a child with a disability?

There are many suggestions for families like exercise, joining a support group, taking time for yourself, recognizing that you’re not alone, learning more about the disability, seek counselling and so on, however there is not a lot about how others can take action.

I remember when the Director of Eric’s preschool expressed her concerned for me when he would be sick and not able to attend. She realized that her staff could assist one another on the days that he was at school however she recognized how challenging it was for me on my own when he was home. She wrote a letter to our local government office to request that the funding provided for his support at school be flexible so that if he was too ill to attend, the staff person could come to our home and provide assistance to me. This was approved and it was extremely helpful to me and to my mental health.

Another time, a nurse who came to our house once a week took a chance and contacted a local funding administrator and voiced that she was very concerned about us and that we should have more help in our home. By doing so, she put her own job in jeopardy however she felt that expressing her concern for our mental health was more important.

It will take a long time for governments and human services systems to transform. As a matter of fact, families say that its dealing with these systems that can cause the most stress.

Here are 10 things that you can do:

  • Find a way to truly understand the family perspective
  • Communicate in a manner that is welcoming and friendly
  • Put aside your own bias and act without judgment
  • Think differently, beyond the status quo
  • Take action and try something new
  • Put families ahead of rules and regulations
  • Ensure that families are a priority in policy development
  • Include families as equal partners in decision-making and program development
  • Take a break when you are fatigued or feel unaffected
  • Be sincere, genuine, real and authentic

It’s the small gestures that are helpful and you can make a difference.