This Isn’t Italy- What I’ve Realized About Parenting a Special Needs Child

Realizations to help cope with the on-going challenge of parenting a special needs child.

There’s a famous poem,“Welcome to Holland” by Emily Perl Kingsley. It’s a beautiful metaphor about raising a child with special needs. In the poem, it speaks to the fact that much like planning and preparing for the birth of a child, people also plan and prepare for vacations. The poem draws parallels between planning for a certain type of vacation, a specific destination-Italy, only to discover that somehow, you find yourself in Holland, a completely different country under a completely different set of circumstances. I remember listening to the words as it was read aloud by one of my professors at the start of a graduate class focusing on children with special needs. I took the class as part of an effort to gain continuing education credits toward our 100 hour professional development requirement. Each three credit course was worth 45 hours of professional development, and at the time, I was a full-time teacher, mother of an almost two -year old toddler and five months pregnant with my second child. I needed to obtain as many credits in one fell swoop as possible, so taking graduate classes that met at night and during the weekends seemed like a plausible solution. As I half listened to the words and half planned what we would have for dinner the next evening, I wasn’t particularly moved. The words seemed so foreign to me and had very little meaning aside from the general sense of empathy one might have for someone experiencing strife or challenge in their lives. I paid little attention to it and continued to turn my attention and focus on the clock, eagerly awaiting for time to go by as quickly as possible so that I could return home. I was exhausted and just wanted to be home cuddling my almost two year old daughter. Later that night, just before drifting off to sleep, I recalled the events of the evening, reminded myself to post a response after reading the most recently assigned journal article and thought more about the poem. I shuddered to think about the prospect of having a child with special needs. I honestly didn’t think that I could cope and thought that it would surely break me and my then very narrow view of the word ‘typical.’ I let the worry of the thought go as I drifted into a greatly needed deep slumber. 

It wasn’t until months later as I sat in front of my son’s isolette in the NICU that I recalled the experience. Little did I know how important those words would become my new life and my world. Little did I know at the time what the next months and years would bring to my life.

Thirteen years later as I reflect on those experiences, I realize that no amount of training, personally and/or professionally could serve as preparation for this ongoing journey, it’s a self-guided tour. While one might receive varying levels of support along the way, there is no way to anticipate how you will react once you have arrived in “Holland.” 

Along the way of this amazing odyssey, I have struggled with debilitating bouts of self-pity, doubt, anxiety, anger, frustration, as well as complete and utter hopelessness. There have been times when I’ve tried to rationalize and intellectualize the incredible sense of injustice and life-altering reality that my son’s preventable early birth brought forth and forever changed his life. Nowadays, I do all that I can’to avoid going down the rabbit hole of negativity. I’ve learned to avoid as many triggers as possible and surround myself with really good people, those who understand, embrace and celebrate my child. 

This was not the life that I had hoped and planned for, but one that I am still learning to embrace. It’s been a dramatic 14 year journey, I’ve watched helplessly as my son experienced so many procedures, surgeries, endless specialists appointments and the on-going challenge of navigating the world with his challenges.

The beauty of time however, is that through the years, my definition of happiness has completely changed. I revel in my son’s progress no matter how small it may be, we focus on all that is good in our lives and constantly abide by ‘the glass half full’ mantra. I am at peace with where we have landed and look forward to my time here in “Holland.” Along this journey, there are several realizations that I have arrived at along the way.

Here are a few that have helped me cope during even the darkest of days, my hope is that they will bring you some solace as well. 

1. Learning to live in the ‘now.’ Over the past thirteen years, I have slowly come to the realization that life as I knew it would never be the same as it was before my son’s early birth. I had to learn to accept our new ‘normal,’ However, that is easier said than done. Exposure to continuous stress, fatigue and a state of perpetual challenge can take it’s toll. With every new year, there was a new set of circumstances to manage, after awhile it did begin whittle away at my sense of well being. I had to fight the constant urge to compare Evan to his more typical peers, and not allow my anxiety to get the better of me and my ability to focus on the ‘now.’ At times, I still fall prey to bad habits, dwelling on the past and what could or should have been had Evan not been born so dramatically early. However, my stints down the negative rabbit hole are much shorter, as I catch myself before I go in too deeply. When I begin to perseverate over all that once was or could have been, I force myself to acknowledge all that Evan has overcome and continues to accomplish. Some days are more difficult than others, and I remind myself to be patient as I continue to evolve in my own growth and development. Hoping for unrealistic goals and milestones only rob me of the precious present and the amazing child that sits before me. I am still learning to live in the now, accepting, honoring and embracing what is happening in the present day. Living in the moment, and reminding myself to staff off worry and concern about tomorrow helps me to enjoy the small moments that I would have previously taken for granted. Focusing on the ‘now’ helps me to honor all that Evan’s accomplished and what may still potentially be in store for his future.
2. It’s okay to mourn. I’ve realized that there are times when I need to go to a very quiet place and just be still. Even after all of these years, there are days that I still need to mourn the loss of a child whose life is full of friends, field trips, sleep overs, baseball games, field day, hikes in the woods with a scouting troop, bicycles, as well as the ability to dress himself. When I start to feel that sense of loss welling up inside me, I know that I need to recharge my battery so that I can be there for Evan. We continue to define and accept our ever changing sense of ‘normal,’ that having a child with cerebral palsy, Autism, ADHD, a sensory and tic disorder can bring forth. There are so many ways in which we continue to accommodate and support Evan’s on-going needs. Every ounce of my being is devoted to daily care and well-being, and the older he gets, the more challenging it becomes. All of our resources, especially time and money are allocated to providing Evan with the best opportunities in regard to therapeutic care. Good therapy is not cheap, and it means constant sacrifice on our entire family’s behalf. It impacts how we live, where we live, what we can afford and cannot afford. It means accepting the fact that you have to live with a leaky roof (for over a year now) a couch bought in 1993, a driveway filled with craters the size of the moon, or absolutely-no-extras; vacations, dinners out, new clothing, etc. However, the feeling of accomplishment and pride that wells up inside us all as we watch Evan overcome a challenge or meet a goal is simply priceless and at that moment, nothing else matters. Allowing myself moments to occasionally mourn the loss of a life that I had hoped and planned for helps me recharge my proverbial battery, so that I can continue to support Evan and give him the best life possible.
3. Don’t compare. Jealousy, envy, whatever you want to call, there’s a little green monster that rears its ugly head every so often, and I have to work extra hard to keep it at bay. It may be when I notice how other children walk (and run) with great ease, or speak clearly and discernibly, or are simply able to make a friend. How we would give or right arm to have included in an activity or invited to just one birthday party . There are hundreds of ways that my son doesn’t compare to his more typical peers, and when I think about them, it hurts. It hurts like no other pain that I’ve ever experienced. However, I’ve learned that I need to remain focused on the thousands of ways that he remains incredibly unique, amazing and an all around wonderful kid. Those are the thoughts that continue to carry us in a forward more positive direction.
4. Sometimes you will get stuck. I’ve realized that no matter how positive I am, how many vitamin B12’s I take, and how many self-help books that I read, I am still going to get stuck. I allow myself a little time to wallow, curl up into a human burrito and binge watch a few episodes of my favorite escape tv to help soothe my wounds. However, being a busy mom in a small house doesn’t lend itself to a great deal of time and space before my demanding life comes knocking at my door. It’s a good distraction from myself and my negative thoughts as I focus on all that is good in my life and help myself to become ‘unstuck.’ (See my Tips for Becoming Unstuck post)
5. Clean House: While this may seem like a suggestion to de-clutter your house and remove all the unnecessary items and dust bunnies, it’s a figurative term referring to your inner circle of support. Over the past thirteen years, I realized that having a special needs child takes an incredible amount of resources, which include time, money, patience, understanding, love, and acceptance. I have had to streamline my life to accommodate these needs. I work, tutor, take care of my home and most importantly mother my children. The other roles that I play; wife, daughter, sister, friend, aunt, employee, tutor, etc. are all secondary to my main role as mom. My husband and I have developed a tag-team approach to life. When my daughter has an event such as a swim meet that may prove too much for Evan physically or put him on sensory overload, one of us will go, while the other one stays at home with Evan. If there is a holiday, party, birthday, or event that will be too taxing for Evan, one of us will go, while the other one stays at home. I can’t tell you how many birthday parties, Christmas Eve celebrations, bar mitzvahs, weddings and social events that I’ve spent home with Evan. It can get very lonely and I have to plan carefully not to feel too isolated or deprived. Having my inner circle of people around to support my family helps to lessen the intensity of those feelings. Find people that can help you and your family, those that lift you up and provide for you in ways that you are simply not able to do for yourself. These are your people. Keep them close.
6. Don’t should on yourself. After years of perseverating on how life ‘should have this been this way or should have been that way,’ I have realized that you can’t go back in time and that sometimes in life, s**t happens. Focusing on all that should , could or would have been is a one-way ticket to Crazy Town. Don’t waste your precious time looking back, set you sails on the future. Remember, the adage, “You can’t control the wind, but you can adjust your sails.”  Put the past to rest. Try to forget what you cannot change, and channel your energy on living in the ‘now. ‘ Remember, the future is the next unwritten chapter of your life. Get busy drafting!
7. Find your tribe: This is advice is slightly different than your clean house recommendation. This is a realization that grew from needing someone with whom I could share some of my deepest and darkest thoughts. I was fortunate to have a good friend Amy at school who has been an incredible resource and role model. I came to understand the power of numbers after I worked to bring a group of incredible women together to form a parent special needs support group at my school. I couldn’t believe how many of my colleagues were also experiencing some of the same stress and angst as I was. Once word spread that there was a group forming and that there would be food served, I was both surprised and delighted at the number of colleagues that attended. Their stories were so unique, so heart- wrenching and sadly so familiar. It was as though we had a secret language that no one else could speak or understand. The bonding agent of our shared experiences, as well as our joys, sorrows, fears and hopes, was awe-inspiring. Sometimes you just need to find a group of people (or maybe even just one person) that are also experiencing the same level of challenge to make the journey a little easier.
8. Guilt is a useless emotion. I realized that I felt guilty for having a child with special needs. I felt as though my daughter was no longer living the life that I had planned for her, or the one that she should have been living. I don’t think that I’m alone in this feeling, as I think that many parents of special needs children often wrestle with this same emotion. I know that for years, I overcompensated with things that my daughter didn’t need and I couldn’t afford simply to relieve some of the guilt that I felt. Most all of our time, energy, finances and every other resource was allocated for my son’s special needs. There always seems to be some unpaid bill, co-pay or something therapeutically related to him that needs to be financed. Our way of life since Evan’s dramatically early birth has always been: food, mortgage, therapy, and everything else. After finding ourselves in major debt, and working so diligently to get ahead of it, I try desperately to act out of love and not guilt. Now when I want to give something to my daughter, it’s time. Time to talk, relax, cook together or just time to focus on how she wants to spend the time. It’s a whole lot less stressful at the end of the month when I don’t receive a pile of bills that I can’t pay, and my daughter is happier having access to me and not things.
9. It might also be lonely. Plain and simple. Even with my inner circle and my tribe, there are times when I find myself living on the fringes of many social circles. There are times when I just feel lonely and somewhat invisible and overlooked. That’s just the way it is. It’s up to me to decide how important it is to be a part of them. I’ve realized that sometimes you just have to accept your new normal and learn to love it for all that it brings to your life. My life has been simplified exponentially, all of the fat (except on me) has been trimmed to the bone. No excess. There are times when I see fellow parents gathering for a Halloween parade or a holiday party and would love so desperately to saddle up to both the wine table and the conversation. Or other times when I’d like to be attending a book club, a zumba class (not really!) or a yoga class in a field of lavender. However, I know that it’s not possible, at least for now. I’ve realized that it’s okay to feel lonely and still not lose my hope and direction. There will be a time when I have an opportunity to socialize more with friends, with each new day, Evan learns and grows more independent, which is very promising.
10. Learn to surrender. There have been so many realizations over the years, some positive, some not so much. One of the most important realization that I’ve made is that sometimes you just have to surrender to your reality and acquiesce to the change. Change is part of growth, and growth is a sign of life. My children are the center of my universe and I wouldn’t trade my life for all the tea in China. I’ve learned that while this may not be Italy, Holland is also pretty amazing. I’m living a different version of my life, and I have finally come to terms with that realization. As a parent of a special needs child, we experiences our own unique version of Holland, through the lens of who we are, not in the form of a sum, but in small and different ways, ones that continue to change and evolve just as we do.