Raising a Child with Special Needs – Do’s and Don’ts

Forced to assess my new, unanticipated and profoundly different life, I had to reassess my value system in order to cope and create a new version of ‘normal.’ 

Thirteen years ago, I was suddenly and quite abruptly placed into the netherworld of raising a child with special needs child when my son Evan was born very unexpectedly 15 weeks prematurely. His dramatically early birth at just 25 weeks forever changed Evan’s life as well as all of ours. There were virtually no books available on the subject matter, few support groups and/or resources, and limited information available to help my husband and I to navigate our way through the quagmire of medical diagnoses, terms and conditions. We often felt like an island unto ourselves, separated from friends and family that no longer understood our new and profoundly different life. While I have no medical training and/or education whatsoever, my recommendations come from my own personal experience and/or there lack of experience. My hope is that through both my successes and failures, you may pick up a value tidbit or two and get a better night’s sleep than I did during those early years!

Before my son was released from the NICU, the attending chief physician gave me some parting advice. First and foremost was, and I am paraphrasing, ‘́You have to chase these guys, you can’t let them rise to the lowest level of achievement.’ Secondly he stated, ‘it matters less what happened in here, it’s what you do out there that’s going to determine the quality of his life.’

Really????? I just sat by this child’s isolette for 126 days straight and this is the only sage advice you have for me? That is some seriously heavy stuff to lay on a woman who’s just been traumatized by giving birth 15 weeks early, depleted of all her coping skills and is utterly exhausted, overworked, overtired and severely overweight.

There were so many thoughts racing through my mind. What’s plan B? Do you have any more realistic advice? Who do I ask for help? Can I buy a book on Amazon about this? How am I ever going to manage all of this when I can hardly manage my 2 year old toddler? These are just a few of the gazillion questions that swirled endlessly in my head on a daily basis, and at times continue to make an ugly appearance even today. Even though I wasn’t a brand-new mother, as I already had a very wonderfully sassy two year old toddler,  I questioned my ability to make any sound decisions. Suddenly, I had a child facing far greater challenges,I didn’t know which way to turn, let alone parent. However, decades later, I now realize that making mistakes is what makes good parents even better. If we don’t make mistakes and hopefully learn from them, we wouldn’t grow as people and as parents. Upon arrival home with our 7 month old baby (Evan was in the NICU for the first 126 days of his life) there was very little time to ponder the who, what, where, why or how we came to be raising a child with special needs, we had to instantly jump into action, and that is exactly what we did, have been doing and will continue to do in order to meet our child’s needs. 

The entire experience of having a baby born 15 weeks premature was completely surreal. (Please see Our Story for details.) I was completely immobilized by my new life and reality. Upon taking Evan home from the NICU at 7 months old, there were so many unanswered questions. It wasn’t typical to bring your newborn baby home from the hospital 7 months after giving birth. We didn’t know him and he certainly didn’t know us. To add to the challenge, my husband had just taken a job that didn’t require travel, which quickly evolved into a job that had him leaving on Sunday evenings and returning home on Thursday evenings. 

After having lived through two bouts of unemployment due to downsizing, we couldn’t risk having him losing another job. In addition to caring for my now two and a half year old rambunctious toddler, working full time, taking graduate credits in order to keep my position at school, tutoring, taking care of both the inside and outside of our home, I was now charged with the care and wellbeing of this new 7 month old baby. My husband quickly morphed into an automaton that walked around in a London Fog raincoat with a laptop, cellphone and a suitcase in tow. He too was exhausted and I believe still in a stock of continued shock to adjust to our new and very challenging life.

It’s only now, thirteen years later, that when I look back, I am not sure how we lived through that time and survived. I know that during this past decade plus, I hardly slept and when I did it was with one eye open. I continued to wait until the next revelation, challenge and phase. The constant influx of cortisol on my body was extremely toxic and wreaked havoc on my endocrine system. The constant exposure to stress, lack of sleep and being in a perpetual state of crisis, took a major toll on my health. Once that occurred, I felt constantly fatigued and depressed, yet I was also incredibly anxious and even in a catatonic state can ́t sleep more than two – three hours at a time. I was wired, but tired all of the time.  I would have to work very hard to focus on all that was good in my life in order not to have a full blown panic attack. Somehow working hard to relax felt like an oxymoron. Even when I was finally able to fall asleep, it wasn’t’ for long, as hours later, I would suddenly bolt awake from a zombie like- someone dropped me in the bottom of a well type sleep, feeling completely panic stricken, gasping for air, as though I couldn’t breath. My heart would race, I would be completely drenched in sweat and I would feel as though I was going to pass out as all the negative thoughts flooded through my mind. Other times, I would awake and have to pinch myself to see if Evan’s incredibly early birth had been just a bad dream. Once awakened, I would spend hours perseverating on what should have been, what could have been and wondering what might yet be. I would make mental lists in my head on what I needed to do, should do and would work toward doing. I would think of all the different types of therapy we could add, try to calculate the co-pays, the time and distance of the appointments, the daily, weekly and monthly schedule. I was completely unhinged. 

As a result, when my alarm would go off just a few hours later, I would drag my exhausted and overly stressed body out of bed and lumber through the day. The circles were so dark and so deep, I could have been cast in “The Walking Dead” without needing any make-up! 

Years later, I have been prescribed Synthroid, (which is essentially synthetic version of the T3 and T4 hormones that my body no longer produces,) and continue to learn how to control my stress through diet and exercise. I am still prone to  becoming overwhelmed with fleeting feelings of hopelessness and fear when I allow my thoughts to run away from me, but the occurrence of that now is significantly less frequent. I am just now working with both an endocrinologist and a nutritionist to live a healthier life. Included is the article Stress and Your Thyroid: What´s the connection?  which helps to break the science behind the basic notion that too much stress can absolutely work to erode your physical, mental and emotional well-being. The ability to manage stress of everyday life and that added challenge of caring for a child with special needs is key to determining the quality of not only your life, but that of your family’s, too.

Thirteen years later, I do realize that this was sound advice that I now know makes a great deal of sense, but having a list of the do’s and don’ts,  would have been life changing for me. While some of these ideas seem like a keen sense of the obvious, if you are anything like me, you may overthink a situation and not follow your instincts.  

Here are a few very simplified tips that I have learned along the way and hope that it keeps you from falling into the same bad habits that I formed.

Don’t:

1. Don’t feel the need to explain  or rationalize any aspect of your child. Unless you want to and it helps someone develop a true sense of empathy, understanding, and/or compassion for your child, you are under no obligation to explain how your child presents, behaves and/or  reacts to the world in which he/she lives. Don’t allow someone’s ignorance, inconsideration, or plain idiocy shame you into providing any kind of rationale as to why your child may act, speak and/or behave a certain way or experience certain challenges. You are there to advocate and care for your child, not qualify your child’s condition or educate absolutely everyone under the sun about why your child may be facing a particular challenge. I was so afraid of my son being judged and excluded, that I found myself continuously compelled to explain why my son was non-verbal, drooled, walked with a compromised gait, wore leg braces, etc. As he grew and his disabilities became more apparent, so did my need to explain, I had a whole spiel about his sensory diet not being met and that’s why he may have a verbal tic or flail his arms. It wasn’t until I heard my daughter (who at the time was only five years old ) explain that her brother cried simply because, “He was borned early,”as she phrased it. It was at that exact moment that I had the sudden realization that Olivia had learned what she had lived- the need to rationalize Evan to the world. Sadly, by watching my poor example, she too had adopted the need to explain his condition away. That was a sobering moment for me, and while I still cringe when we are in a social setting that I know may challenge Evan, I no longer feel the need to provide a subtext for the general public. As a result, of following my own advice, I’ve had to remove many people from my inner circle. While this can feel incredibly lonely some days, the notion that my son is not being judged helps to fill the void. Nowadays, anyone close to me understands, accepts, embraces and most importantly celebrates all aspects of Evan. There is no greater joy in life aside from having your child loved and accepted, so folks, choose your tribe carefully and remember, no explanation is required. Ever. End of story. 
2. Don’t listen to everyone’s advice. You wouldn’t believe the crazy pieces of advice and/or stories that people would share about their experiences with children born dramatically premature. Some recommendations ranged from putting Evan into a shoe box, to slathering him with rose oil to ‘wash away’ any challenges that he faced. Someone once had the absolute gall to suggest that I had done something perhaps to deserve this challenge. There is a whole lot of crazy in this world. This also applies to doctors as well, remember, medicine is not an exact science, it’s often a system of trial and error based on prior experience. For years, I spent my days going from one specialist to the next, acting on every piece of advice, running from one kind of therapy to another. While some therapy was invaluable for my son and helped him to continue to reach milestones I am sure he wouldn’t have met otherwise, some of it was just excessive, and further added to our financial strain, physical exhaustion and emotional stress. Consider all the information and then weigh it accordingly. Ask yourself, can you afford it, will it be a financial strain for you? How beneficial will it be to your child’s current treatment plan? What are the pros verses the cons. As a result of listening to too many people, we were exhausted, in debt and completely void of making sound decisions. We had to pull back, retreat, reassess and then move forward with a more realistic plan of treatment. Remember, you are the expert, so learn to trust your instincts, they are steeped in knowledge and experience. You know more than you realize!
3. Don’t overcompensate. While I would buy my clothing at stores that sold garden hoses, toilet brushes and kitty litter, I would dress Evan to the absolute nines. I bought clothing that had themes which I thought would make him irresistible to others-picture perfect: cute little sailor outfits, little tweed caps and jodhpurs, velvet overalls etc. I was seriously disillusioned and was projecting my own insecurities and inability to accept my new life onto the world. No matter how cute my son was dressed, it would never eradicate the challenges he faced and continues to face. When I look back, I can’t believe that I thought the world would be more accepting of my child if he were dressed more cutely. While we have had some very unpleasant experiences, I still have faith in the human race and their ability to feel compassion and empathy for others. 
4. Don’t compare. Plain and simple, don’t do it. You will find yourself down a rabbit hole of self pity and loathing from which there is no easy escape. There will always be someone with something bigger and better than you and yours; a bigger house, a better car, more vacations, the list is endless. However there are also those with struggles far greater than yours. Everyone has strife in their life, some challenges are just not as visible. Over the years, I have slowly realized that part of the human endeavor involves pain, and it’s relative to the person experiencing it. When I think of all the times (even occasionally today) I felt compelled to compare myself to other moms. Whenever I saw a pregnant woman, I politely inquire,  “What month are you in?” tormenting myself each time I did so. We can’t venture back in the past and rewrite history, we need to accept where we are and move forward from that vantage point.
5. Don’t set unrealistic goals for your child or yourself. To say that you are going to run five miles a day, have your child learn to use his/her pincer finger and clean your entire house in one week is utterly and completely unrealistic. Working toward taking a walk three times a week, finding ways to have your child want to grasp with his/her pincer fingers and straightening up one room at a time are more attainable goals.  If a goal isn’t realistic, your motivation and willingness to try will be diminished. Set one goal a month and work to maintain it, then if you are successful add to the list. Be real with yourself and your goals. If you find that you aren’t reaching your goals, then ask yourself if these are truly goals that you want and need or something that you feel you should want and need. Re-evaluate and simplify your list of goals and objectives to meet your new life.

Do:

1. Do accept help from others. Plain and simple, every parent needs a village, and a parent of a special needs child needs an entire city! Seriously though, learn to accept help in whatever form that may be. My husband and I could not have survived without the help of my family. Help can mean different things at different times; physical, emotional, spiritual and even financial support. Sometimes it meant having someone watch our child while we ran to the grocery store, other times it meant going someplace with our daughter that we could navigate with Evan, or fulfilling a work obligation. Learn to accept that you cannot possibly do everything on your own and that accepting help from family and friends is not a sign of failure, it’s a sign of strength. When I first came home from the hospital without Evan, I was completely overwhelmed. I didn’t even know what day of the week it was, let alone how I would care for my two-year old and take care of a home. To help ease the transition into our new sense of normal, my sisters and mother went through all of my cabinets and re-organized them, they prepared meals and froze them for us so that we wouldn’t have to worry about fixing dinner. Learn to put your pride aside and accept help. I was hesitant to accept financial help, however, all of Evan’s therapy; speech, (two different kinds- prompt and hippo-therapy, occupational, physical, social group, etc. became very expensive. We never anticipated how quickly co-pays, parking, tolls, gas and mileage on our car would add up. Often times, we found (and still do) ourselves waiting weeks, even months to be reimbursed for out of pocket expenses. In the meantime, there is a mortgage that needs to be paid, mouths to feed, etc. I’ve learned to accept taking help, even financial help from my sister and mother. While occasionally feelings of self-consciousness and even shame rear their ugly heads, I remind myself that I am living a life that I could not prepare for and am doing my very best at it. Six Support Groups for Parents of Special Needs Children, 10 Reasons Why Special Needs Parents Should Join a Support Group, Department of Human Services-Catastrophic Fund
2. Do set realistic goals and objectives. Just because your child has special needs and/or developmental delays doesn’t mean that you shouldn’t set realistic goals for them. When setting goals, remember that Rome wasn’t built in one day. Be realistic. For example, if one goal is to help your child become more independent when getting dressed, help them buy setting out their clothing, including underwear, socks, pants, shirts, etc. If they need support when dressing, allow them to do one part on their own such as put on their own undershirt. Work with both your childś strengths and challenges to help them achieve goals. If appropriate, you might also want to involve your child in the goal-setting experience. Remind you and your child that set-backs are very common and that with each new day, they come closer to reaching their goal just by trying. A sense of ‘stick-with-it-ness’ is important to instill with our children. Tenacity, diligence and perseverance will help to serve them well. 
3. Do trust your instincts, don’t ever let anyone talk you out of following your gut reaction to a situation. When I ventured into the world of special needs parenting thirteen years ago, I felt completely overwhelmed by all the information. It seemed that with each doctor and/or therapist visit there were new and unanticipated challenges, recommendations for treatment, procedures, etc. I wanted to take my baby and run far, far away to the most remote part of the planet. However, one piece of advice that I have is to take hear what the ‘experts’ have to offer and then in the quiet of your own home, review the new information, consider the pros/cons of this information and then move forward with a plan of action that factors in your own instincts and intuition. No one knows your child better than you!
4. Do change your thinking and discover the power of ‘yet.’Day to day life for a parent with special needs is unlike the daily life of any other parent. Our small miracles  (and they are at that!) require more patience, time, energy and every other kind of resource that you can imagine. Our exceptional children may not reach the milestones that their typical peers as readily (and in some cases at all)  and everyday life activities such as getting dressed and getting out to the food store can become an Olympic sport! When Evan was an infant, life was somewhat similar to what it had been before his profoundly early birth. However, as he began to grow and develop, I soon realized that he required a great deal of help and support with activities that required both fine and gross motor skills. Evan needed help putting on and off his clothing, putting on socks and shoes, brushing his teeth, feeding and bathing himself, etc. I soon I found myself limiting my daily activities just to avoid the challenges, however that lead to feelings of isolation and loneliness. I became very depressed and  realized that I needed to change my thinking to more of a growth mindset, if I was going to help my son reach his unrealized potential. I had to shift my thinking to ‘he can’t do this or he can’t do that’ to he hasn’t been successful at this or that ‘yet.’ The power of ‘yet’ is huge when you start to consider the endless possibilities it holds in store for both you and your child.
5. Do accept your new sense of normal and make it work for you. Recently, I had to move my office at school. While I don’t typically spend a huge amount of time in the space, as part of my day is spent in the classroom co-teaching children functioning up to two years below level in the mainstream classroom. My other role is as the writing content specialist, where I oversee the changes to the curriculum, test any new students to the district and yearly place over 1,100 students from 5th to 6th and from 6th to 7th grades. I had been in the same space for over 21 years. Along with just a few remaining colleagues, I was one of the ‘originals’ that had opened the building. I had an established routine, there were certain times of the day that I would open the window and allow the cool, damp morning air in, notice the sunlight of the afternoon creep in through the blinds,and watch the field beyond through the varying seasons of time. When I had to move last May, I reacted so strongly, I couldn’t let go of the space, of my things that I couldn’t bring with me to my new space. It was really debilitating, I was overwhelmed with feelings of anger, sadness and utter resistance. It was very atypical of me, and I am a huge supporter of the notion that change is a sign of growth and that growth is a sign of life. I wasn’t quite sure why I had such difficulty letting go of the room. In public education, resources are limited, and space is very rare commodity, so I had little to say about the situation. It wasn’t until this summer that I realized that I had packed up decades of my life, my former life- pre-Evan. While my life had its ups and downs, I could manage and cope with them. I think that a small part of me secretly wished that I could lay claim to that part of my former life, my former self, the person before becoming a parent to a child with such great needs. I realized that I wasn’t mourning the space as much as the notion of what it represented, my former life. While I wouldn’t ever trade one second of the time that I have with Evan, I do have to pay attention to the fact that my life is forever changed. My new normal is here to stay, and every part of me has to accept and embrace that. My life has changed dramatically, and I too need to continue to evolve and accept these changes. There are some days when its easier than others. There’s no going back in time, just forward. My son has disabilities, and yes it has changed the way he and I will live life for now. I must keep in mind that  now is not tomorrow, or the next day or even the day after that. I don’t know what the future holds, so for now, I just have to accept my new sense of normal and make it work for me. 

By the way, I love my new office!