First, think back to when you had a newborn. The sleepless nights and how tired you were, the constant crying, all the nasty diapers, you had no idea what the baby needed, if baby was hurt and couldn't tell you, and if you would ever figure out this whole parenting thing.
Now, can you imagine having that newborn's needs, times 15 years, and add in puberty, more complex needs, the child being stronger and able to seriously physically harm you, and STILL having those same newborn needs? (Can you imagine giving 15 YEARS of that level of care?)
Would YOU be overwhelmed? Welcome to special needs parenting stress levels!
Now, let's start with a couple statistics:
- 35-65% of children with special needs have anxiety and/ or depression
- 40-70% of parents of children with ID (intellectual disability) have anxiety and/ or depression
- 25% of caregivers meet the diagnostic criteria for major depression
WHY?
Why is it so common for families containing a special needs child to have such high levels of anxiety and depression?
- Parenting a child with ID is DIFFICULT! Exhausting!
- You will feel like you have to fight everyone- insurance, government agencies, schools, and managing to still be "therapy mom"!
- There could be a genetic component
- For the child, they are used to failure, so they expect failure. Not very encouraging
- The high level of needs in addition to typical daily tasks is overwhelming
- Marriages are VERY strained in special needs parenting! The divorce rate skyrockets for this group
"Having a child that has a disability, it's all-encompassing. You could see how people would lose themselves" -Dr. Fred R. Volkmar, director of Child Study Center at Yale
Symptoms of Depression
Meet 5 or more of the following:
- Depressed mood most of the day, every day (feels sad, hopeless, empty)
- Diminished interest or pleasure in activities
- Significant weight loss or gain
- Insomnia or hypersomnia
- Psychomotor agitation or retardation (doing things really fast or slow)
- Fatigue or loss of energy
- Feelings of worthlessness or excessive guilt
- Diminished ability to think or concentrate or indecisiveness
- Recurrent thoughts of death
"Parenting a child with ID increases the risk of provoking feelings of loss (i.e. of the perfect or dreamed of child and of one's personal freedom), helplessness (i.e. experiencing high stress, not being able to change the situation and not being able to get the help one needs) and failure (having a child with difficult behavior and not being able to pursue one's personal goals in life)" -Depression in Mother and Fathers of Children with an intellectual disability
Hopelessness Scenario:
Sabrina is worried about her son, David, who has ID and Autism. The school has offered an IEP, but not one that she feels will meet his educational needs. The school told her to "take it or leave it". She wants David to have a better education, but the school tells her that they are professionals and know what is best.
She also was on the phone during her lunch break with her insurance company, who said that they only offer coverage for "rehabilitative therapy". If he never had skills to start with, then they won't cover anything.
She also called to get David on Medicaid, but the waiting list is 14 years long. "By the time he gets any services, he will already by 20!" Sabrina sighs. David's doctors have recommended an immediate treatment program of 3x/ week of speech therapy, and 2x/ week of occupational therapy, and 1x/ week of physical therapy, plus 20 hours weekly of ABA.
Speech therapy is $90/ hour, occupational therapy is $120/ hour, physical therapy is $75/ hour, and to add ABA... How could she ever manage to pay for anything? She was barely making ends meet as it was, working as a secretary at a legal firm.
David is getting stronger by the day, and his meltdowns are harder and harder to handle, and it feels like they are becoming more frequent as well. He has never even said "I love you".
Sabrina buried her face in her hands, tears leaking through her eyelids. David's father had left a year before; this wasn't the family he had imagined, and it certainly wasn't how Sabrina thought life would go either.
Loss of Motivation
Unfortunately, there are WAY too many Sabrinas and Davids. Is it any wonder that parents have a loss of motivation? What parent can make time for personal leisure pursuits while they feel like they are drowning in demands?
Poor Appetite or Increased Appetite
Stress affects people differently. Some are unable to eat, while others turn to food for comfort.
A parent of a child with special needs and/ or behaviors may have increased anxiety, worry, or preoccupation that may affect his/ her appetite, and self-soothe by using food or other substances.
Insomnia or Hypersomnia
Kids with special needs often have sleep problems (frequent waking), while directly affects the parents as well- the child will come and wake the adult.
Almost 100% of people who are chronically sleep-deprived will head towards depression.
Parents of children with special needs may begin to sleep more during times when their children are not present as a means to escape their feelings and stress
Fatigue or Low Energy
The day to day obstacles and/ or routines of parents with special needs children can be exhausting and the constant anxiety can begin to wear on parents emotionally and physically
Low Self-Esteem
Parents of children with special needs often feel inadequate as parents, frustrated because they are unable to handle their children's behaviors or meet their needs on their own.
Parents sometimes feel responsible for their children's diagnosis
Parents sometimes feel shame over their feelings and needs around their children's disabilities
Poor Concentration or Difficulty in Making Decisions
Constant stress and overload may begin to cause distractibility, mild memory issues, and poor concentration (I call this my "Mommy brain")
Information overload or insignificant information may cause a parents to become uncertain and lead to inability to make sound choices
Social Isolation
Parents of children with special needs sometimes feel isolated from other parents, supports, family, and/ or the community
At times, parents may feel some embarrassment surrounding their children's behavior or their inability to handle those behaviors in public, so they keep themselves and their children secluded from the public
Isolation Scenario
One of Chelsea's school teachers told me about one of the students they had taught previously. This child (6 years old) had only ever been at his home and school. No trips to the park, never been to the grocery store, or to mail a letter at the post office, nothing. Home and school were all he knew.
The parents did all their shopping online, because it was easier than taking this child out in public. Anytime they needed to leave, the boy got a babysitter.
How many times have you heard, "It's not like they will go to kindergarten in diapers and not talking!"? Some kids do. But usually they are "shielded" from the public, in separate schools or a back classroom.
I LOVE how Chelsea's current school does lots of inclusiveness. Chelsea's mainstream classmates are always eager to volunteer to be her "buddy" at recess, or lunch, or to show her what to do in PE. If you have typically-developing children, thank you for teaching them to be kind and patient with children who have special needs! It is greatly, greatly appreciated!
Grief Cycle
The grief cycle isn't just for when someone you love dies. Any time there is a change in life's circumstances and/ or individual's expectation of their life, there is a grieving process on some scale
Parents may feel anger, denial, hurt, etc. of grief, but may not acknowledge those feelings and, therefore, never more through those feelings in a healthy way
Inability to process and deal with the different stages of grief may lead to discontent, lack of acceptance, frustration, and unrealistic, or even no, expectations
Stages of the Grief Cycle
- Shock and Denial- avoidance, confusion, fear, numbness, blame
- Anger- frustration, anxiety, irritation, embarrassment, shame
- Depression and Detachment- Feeling overwhelmed, feeling "blah", lack of energy, helplessness
- Dialogue and Bargaining
- Acceptance- Explore options, have a new plan in place, feeling empowered, security, self-esteem, having meaning
"It's important to expect a roller coaster ride. Remember as you ride, you are going to come to loops and twists; enjoy the good times, but don't be surprised by the bad. Where you are isn't where you are going to stay"
Financial Strain
There is no way around it- it can be quite expensive to raise a child with special needs. Between the cost of treatments, services, therapies, and medical expenses, many families accrue a great deal of debt.
Many families won't qualify for assistance with the cost of care due to their income, which is sometimes only barely above federal income guidelines.
Financial stress is already one of the main causes of marital discourse and can lead to feelings of hopelessness
Lack of Support
Some parents have a sufficient support system while others do not. Some parents are raising their children solely on their own. Some do not have family or community support.
Lack of support can further the feelings of isolation and allow the parent to continue in his/ her negative or unproductive thinking and behaviors.
Lack of Resources/ Help
Parents aren't always aware of the services that their children are entitled to and, therefore, struggle to meet their children's needs.
Parents don't always qualify for assistance with some resources due to income requirements, but those parents aren't always able to obtain those services on their own.
Inability to access resources or lack of knowledge that there is help available can lead to increased worry, frustration, hopelessness, stress, and sometimes desperation and impulsivity.
Symptoms of Generalized Anxiety (3 or more)
- Restlessness or feeling on edge
- Being easily fatigued
- Difficulty concentrating or mind going blank
- Irritability
- Muscle Tension
- Sleep disturbances
Anxiety Profile
- Physical Reactions
- Sweaty palms
- Muscle tension
- Racing heart
- Flushed cheeks
- Light-headedness
- Behaviors
- Avoiding situations where anxiety may occur
- Leaving situations when anxiety begins to occur
- Trying to do things perfectly or trying to control events to prevent danger
- Thoughts
- Overestimation of danger
- Underestimation of your ability to cope
- Underestimation of help available
- Worries and catastrophic thoughts
- Moods
- Nervous
- Irritable
- Anxious
- Panicky
What do we do?
- Basic responsibilities for self
- Take care of the caregiver
- Action versus Inaction
- Live in the present/ mindfulness
Care for the Caregiver
How many dozens of times have you been told that you (as a parent of a child with special needs) need to take care of yourself?
Mary Thoughts
I remember thinking, "Cool, so when am I supposed to fit in this self-care? Am I supposed to do squats during therapy? Read a book instead of doing home therapy practice? Maybe watch a movie while the rest of my family needs attention?"
BUT- the times when I did do things for myself- do a community play, or read a book that I wanted to (not about seizure/ genetic disorders/ learning disorders), I felt so much better and happier!
My husband sent me on a week trip to Hawaii with my sisters 2 years ago, and at the time, I thought, "I don't deserve a trip anywhere, I am barely hanging on as it is!" but I cannot even describe how happy I was all that time!
BUT- the times when I did do things for myself- do a community play, or read a book that I wanted to (not about seizure/ genetic disorders/ learning disorders), I felt so much better and happier!
My husband sent me on a week trip to Hawaii with my sisters 2 years ago, and at the time, I thought, "I don't deserve a trip anywhere, I am barely hanging on as it is!" but I cannot even describe how happy I was all that time!
- Cognitive Restructuring
- Thinking "I will figure this out" rather than "I can't handle this"
- Catch your negative thoughts and change them
- Medication
- Improving your interpersonal relationships and support system
- Activity scheduling
- Find and plan something to look forward to!
- Work on your marriage- dates, getaways
Treatment for Anxiety
- Cognitive restructuring
- Relaxation training
- Progressive muscle relaxation (look up on youtube)
- Controlled breathing
- Imagery
- Overcome avoidance (predict it!)
- Mindfulness
- Medication
Other Ideas
- Find someone to talk to about your feelings
- Attend a support group
- Talk with your health care provider
- Ask for help (family, friends, neighbors)
- Sleep!
- Develop a GREAT sense of humor!
- Exercise
- Good nutrition
- Get a massage (try 15 minutes from your partner! It reduces depression)
- Pray, meditate, read
When Should You Seek Professional Help?
- Ongoing and/ or chronic depression
- Ongoing anxiety
- Suicidal thoughts
- Dramatic Mood Swings
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