Most parents would agree that their role generally presents many challenges and difficult emotions. But parenting a child with a disability is a whole different story.
Like people, disabilities come in many different forms. Common types of disabilities that affect children include:
- physical (Muscular Dystrophy, Epilepsy, Cerebral Palsy)
- developmental (Autism, Down Syndrome, Fragile X Syndrome)
- behavioral or emotional (ADHD, Bipolar, Oppositional Defiant Disorder)
- sensory (Deaf or Limited Hearing, Blind or Visually Impaired)
Some syndromes and diagnoses create combined types of disabilities. Fatal diseases also create additional emotional struggles in parenting. All of these situations put parents into a unique soup of emotional highs and lows.
If you are a parent of a child with a disability, you need to know, most importantly, you are not alone. UNICEF reports nearly 240 million children globally have some form of disability. And scientific research done in the United States indicates recent increases in percentages of disabled children. Many others are coping like you.
Reaching out and talking with other parents of children with similar issues/behaviors helps! You will find out you are not isolated in your situation. Share your frustrations with someone else who understands and feels similar. You can help them, too. Having support saves you during really hard times.
But what if you feel like you can’t talk about your difficult feelings?
Conflicting feelings as a parent of a child with a disability
Parenting a disabled child can understandably produce mixed emotions. What is okay to feel? How do you handle difficult or even shameful emotions?
Our brains are primed to avoid challenging emotions and thoughts. Especially when they contradict what is expected or are hard to understand. However, avoidance of tough feelings causes them to fester. Exploring uncomfortable feelings is better for everyone. So let’s go exploring.
1. Overwhelming sense of responsibility
Obviously, parenting comes with great responsibility. As a child develops, the child becomes less dependent on their parents. However, disabilities might change this natural progression. Some disabled children rely on their parents beyond the teen or young adult years, even indefinitely. So there might understandably be a mismatch between past expectations and your current level of responsibility for your disabled child.
In addition to hands-on care, other responsibilities are possibly magnified by having a disabled child. These might include financial issues and behavioral adversities. These responsibilities will be addressed throughout this article.
Constant caring for others wears on a person. You may be feeling anxieties or exhaustion. Be certain to take care of and take time for yourself. Find healthy ways to relax and have fun. Ask for help and accept help from others. Do this for yourself and your family.
Also, look into resources for caregivers, whether that’s respite care, self assessment tools, or government assistance.
2. Grief on behalf of your child’s disability stress, pain, or frustration
Every parent wants their child to succeed, improve their talents and pursue their interests. We want them to excel in academics and sports. We want them to have a happy social life. With a child that has disabilities, this doesn’t always happen. It’s hard to watch them struggle.
Perhaps you have cried because they struggle to connect socially or require accommodations that they might not always get. Maybe this just isn’t the life you always imagined, and you have to mourn the expectations you had for your own future and lifestyle.
Grieving on behalf of your child’s disability, stress, pain, or frustration is common. So is grief about the impact on your own life. Both are equally valid.
3. Financial anxiety
As mentioned earlier, the financial responsibility of parenting children takes its toll on many parents–what about parents of children with disabilities? Having a special needs child may seem financially impossible. Medical debt overwhelms a household, and meeting these financial pressures breaks more than the bank.
So what can you do?
Check into utilizing free resources including your local school district services and government assistance for wellness needs, like Speech Therapy and Occupational Therapy. Additionally, the Department of Rehabilitation in your state may help your adult child to prepare for and gain employment. Prepare for dealing with government paperwork and oversight. It may not be easy but hopefully it will be worth it.
4. Sibling and spousal conflict
In family situations, siblings of disabled children may experience specific emotional turmoil related to parents’ divided attention. They may have trouble accepting what they see as double standards between themselves and their disabled sibling. These feelings make sense in the mind of a child, and as a parent, it’s important to get your non-disabled child the help they need as well.
In addition to conflict between your children, disability in the family can contribute to marital or relationship struggles (through no fault of the disabled individual). Even the threat of divorce can loom. Marriage requires time and effort even without a special needs child. Be certain to take time for your marriage away from your children, to find outlets to vent about your own emotions, and to seek professional assistance when appropriate.
How can I cope with difficult emotions as the parent of a child with a disability?
It may be difficult to accept that your child will live a life different from yours. You may blame yourself, or wonder how the rest of your life will play out. How can you cope with the inevitable difficult emotions of parenting a disabled child?
1. Cut yourself some slack
Cut yourself a break now and then. We all have bad days or things that rub us the wrong way. We get upset or lose control. Spending an enormous amount of energy and resources trying to cope with these mental and health struggles is exhausting for you and your child. So give yourself some credit for the major challenge you’re up against.
Take time for self care. Take a breath. Take a walk. Phone a friend. Scream, if need be.
2. Keep some perspective
Be open-minded about the experience. If things are a little socially awkward, painful, or rough for you, remember your child feels that way…all day every day. Instead of focusing entirely on the disability, look for the capabilities. Of both you and your child, who are in this together. You have been privileged to parent a unique child which means you are a unique parent, too.
3. Notice how far you’ve come in your journey
This may seem counterintuitive. However, the reality of your situation is you have learned a lot by parenting a child with a disability.
For every angry frustration you have felt, you better understand peaceful contentment. Each moment of helplessness exposes your drive to do. Expectation has yielded to curiosity and surprise. Fear has mixed with courage.
4. Stay supportive and accepting, even if you can’t relate
Be supportive and accepting of your child’s neurodivergence. What does being supportive and accepting look like specifically? First, instead of excusing or denying the problem, seek professional advice to get your child the physical, emotional, and cognitive supports that can help them. Second, support can look like asking for perspectives from grown adults with your child’s disability, like the parent in the tweet below.
5. See some upsides
It doesn’t take away from your or your child’s struggle to think about the things that are good in your situation. For instance, take the case of children with autism. Autism comes with so many positives! We need neurodivergent people in our world. The new and unique ways autistic kids see things and tackle problems is amazing. Autism often comes hand-in-hand with extra creativity, insight, and intelligence.
Instead of focusing on what your child can’t do, think about some things that they can. They say when one sense is lacking another is heightened. If your child can’t speak, for instance, how else do they connect with other people? How about an infectious smile or a heartwarming laugh?
A good friend of mine who is the mother of a severely physically disabled daughter reminded me we all struggle with some level of “dis” in our abilities. Isn’t that the truth?
6. Reject blame for your child’s condition
According to Joseph Meyer, a father of a person with a serious psychiatric health struggle, parents of children with severe psychiatric struggles or other disabilities unfairly receive implications of partial blame. As a parent you may be held somewhat responsible by others, but that is a reflection on their judgment, not your actual culpability.
7. Make the most of the time you have
Having witnessed my friend’s son die, I will honor her and him by sharing from her experience. Provide the best quality of life you can. Be grateful for the random things your child may say that make everything okay for the moment. Make and capture memories.
Having a child with a disability may create less common experiences of parenting. And likewise, you may experience less common or increased emotional difficulties as a result.
Having explored some situations and things it’s ok feel, try to separate your frustration from the love you feel for your child. Being disabled cannot be cured. It has no fault or blame. Your beautiful child is not physically or mentally perfect. That is o.k. None of us are. We are all limited in some way.