Sarah Zucca MS, LPC, CADC
Give Yourself Some Grace
I read an article the other day that sparked my curiosity. It described how special needs parents have similar reactions mentally and emotionally to combat veterans. As a clinician who specializes in treating Post-Traumatic Stress Disorder (PTSD) and trauma, I initially scoffed at this notion. Then, the more I read, the more I fully understood and agreed.
Raising a child with special needs means life is unpredictable. At times, there is no order, rhyme, or reason. Most likely it means you do not always have a child who can effectively communicate what is happening inside their own mind and body, so you are left guessing What does my child need? Typical daily tasks have extra (often exhausting) hurdles to overcome.
When I am assessing a client for PTSD I look for the following symptoms: hypervigilance (constantly scanning your surroundings for threat), avoidance behavior (limiting where you go and who you see), racing thoughts (mind is always going), excessive guilt (blaming yourself), sleep disturbances, loss of interest in previously enjoyed activities, and loneliness (feeling as if no one else gets it). I imagine many parents do not want to compare having a special needs child to the same symptoms as someone who has been violently attacked, abused, or experienced war. But when we are truly honest with ourselves, we see such parallel emotional responses. I am here to affirm, you can love your child, want your child, do anything for your child, and still admit that because of the extra demands their special needs place on you, them, and the family, PTSD symptoms are a real part of your world.
Experienced a Traumatic Event
If you were to ask a special needs parent if they can remember the day their child received their special needs diagnosis, most would say it is seared in their minds. It became such a life altering event, that often the details stay very vivid and real for them. You can remember where you were, who said the words, “your son or daughter has…”, and the gravity of emotions that set in. You may not remember much about what happened after leaving the doctor or school building. The weeks following may be a blur as you learned everything you could about the diagnosis and treatment, but the moment the words were uttered still replay in your mind months and years later.
Hypervigilance is the state of always scanning for danger. When you are caring for a child with special needs, you are always scanning the environment for real or perceived threats. Did I cut the tag out of the shirt? Will she eat the meal I prepared? Will he run into traffic today? Is the gym too noisy for him? Will she have a seizure today? These are some thoughts you may have daily. Most parents look forward to milestones such as when their child can communicate to them, when their child sleeps through the night, or when the child is able to understand the dangers in our world. Some of these milestones never come or occur much later for a child with special needs. Ask a new parent what the most exhausting aspect of becoming a new parent is, and most will answer the sleep deprivation and not knowing exactly what their child is needing. No matter how much work invested, gains made, or skills learned, a child who is struggling with special needs will still have moments of difficulty accessing thoughts and feelings, regulating emotions, and being able to communicate effectively. Constantly anticipating what your child is needing, is feeling, or what could set him/her off leaves you in a constant state of having to scan the surroundings, or in a state of hypervigilance. This takes an emotional, physical, and mental toll on you.
No matter how much family and friends try to support you, understand what you are going through, and “get it,” raising a child with special needs means decisions are made to not attend fun functions, events, or holidays. You must weigh “is this worth the possible meltdown, setback, and emotional stress on the whole family?” Sometimes the answer is yes, and often the answer is no.
Ask a special needs parent what one thing they wish they could change and often it would be “I wish I could turn off my mind.” Because of the hypervigilant response, your mind is always on the go. Not only are you scanning the environment for danger, but you are keeping track of multiple weekly appointments, communicating between multiple providers, and navigating multiple systems (school, community supports, or government assistance programs). You are also simultaneously thinking about this moment, this day, this week, this month, this year, and the next 10 years. You are trying to survive this day while also fearing the future. Will my child be able to live independently? Will my child be bullied or harmed and be unable to tell me? What will happen to my child if I were to die? Will my child live to see tomorrow? Each parent worries about their child and their future. To a special needs parent these worries are magnified because the future is not linear, and there are a million unknowns.
When you are raising a child with special needs, it is a common experience to replay your child’s entire developmental history (to include the moment of conception) to scan for what did I do to cause this? When you love your child, you want nothing more than to take away any hardship they could be encountering. This often leads a parent down the rabbit hole of negative thinking and self-blame: if I had done this during pregnancy, birth, first year of life; Why did my birth go the way it did and did this cause the special needs? If only I had gotten he/she diagnosed sooner; if I had done this experimental treatment; if only… After you have come to accept the diagnosis, the excessive guilt doesn’t let up. Often parents beat themselves up after a meltdown or after a medical setback: I should have known this party would be too much for my daughter; If only I would have known they really were sick and not sent them to school.
Raising a child with special needs can be particularly lonely. Your family and friends who are raising (or have raised) typically developing children may do their best to get it, to support you, and be there for your family. But unless you are living it daily, it is impossible for others to know exactly how you are feeling. Even when you find a group or another special needs parent, their journey and experience is also vastly different. Each child is unique and comes with their own difficult challenges. Again, this can lead to feeling lonely and isolated. Despite couples being in a healthy marriage or relationship, these feelings of loneliness persist because most of the time is devoted to shuffling your child (or children) to appointments, managing IEPs or school needs, and handling extra demands placed upon the family. Often parents are so exhausted and not much is left for caring or connecting with their spouse.
Loss of Interest
After reading the above, it is probably no surprise that while navigating the daily challenges, you might not find the same enjoyment out of things you used to. Family functions that used to bring great joy are now wrought with anxiety prior to, during, and after the events. Trips take on all new elements to anticipate such as what sensory challenges your child may encounter, anticipating elopement issues, and navigating meltdowns. Each parent has a vision of how holidays, birthdays, or family vacations will occur, often created well before becoming parents. After these moments routinely fall short of that vision; it is easy to see why you no longer find enjoyment in these events.
While most of what this blog has focused on is the negative impact and toll being a special needs parent can have on one’s mental health, I hope the takeaway message is not negative. In fact, I hope it is inspiring to all the special needs parents who are showing up each day, working on being the healthiest version of themselves, and learning to live and thrive within the chaos. You deserve to give yourselves grace and compassion. It is not an easy road by any means, but learning to be healthy, raise healthy children, and cultivate healthy relationships is possible. I think the most important first step is to admit our lives can feel like a war zone. Raising a child with special needs is exhausting and can deplete you more than you ever thought possible. Ignoring these facts often only increases the above symptoms.
We will share more posts on how to live in the moment and find joy in these moments when the storm quiets, as I believe that is the best recourse for the above symptoms. I am also including the article below that inspired my deeper reflection on the impact being a special needs parent has on one’s mental health.