Susan Silver, MBA, MA, LCPC

Wow, you’re having your first child. It’s very exciting and scary. You find yourself discussing with other people, family, friends what you’re doing to prepare, what life may be like, how you are envisioning the inevitable changes, though in reality, you can’t begin to understand what your new status as a first-time parent will truly be like. You’re wondering who the baby will look like, possibly contemplating milestones, or fantasizing about their ultimate careers. You are about to acquire a title that will never leave you once obtained, that of “parent.”

Or, you’re having your second or third child. You’re still excited and scared. You’re focused on your current child’s (or children’s) reaction to the new sibling, how it will change the dynamics in each family grouping, how your life will change with the now second or third child, but you also have a certain security in knowing that this time you possess a set of skills:  How to give a baby a bath, when to start food, what to expect in developmental milestones – smiling, grasping, talking, sitting up, walking, etc. -- though the specific knowledge about the new little individual still remains a mystery.

Alternatively, you’re adopting. In addition to all the basics that go along with the first two options, you have additional concerns of what the baby’s life has been like until this point. What were the circumstances related to attachment (or lack thereof), have developmental milestones been met, the baby’s health, the health history of the family of origin. Surrogacy, too, comes with a whole host of concerns.

What all these potential scenarios have in common (unless you are knowingly adopting a special needs child) is that you, the parent, have a set of basic expectations that really are nonnegotiable. Of course, my child will smile, roll over, stand up, walk, talk, interact with other children, go to school, etc.  So… what happens when a monkey wrench is thrown into this normal, totally expected progression? For the sake of this piece, we will use major learning disabilities or other disabilities where a child remains at home, not necessarily a separate care giving situation.  Such examples may be those of extreme ADD or ADHD, deafness, partial sightedness, or conditions limiting physical engagement. Issues to explore are the impact of discovery, parents’ recovery enough to be proactive, the education of others (family, friends, caregivers, teachers, etc.) with whom the child interacts, necessary familial adjustments involving all units, the grieving process related to the loss, and, in most cases, emerging from the fog and realizing the unexpected gifts and growth that were part of this process. 

Sometimes the potential disability is obvious and other times the signs emerge piecemeal. It may start with niggling observations as in the case of hearing impairment, that something is not quite right, but is dismissed. It may then become increasingly prominent at which point doctors’ appointments are sought followed typically by an array of specialists. The time in which to receive a diagnosis will vary and the pros and cons of waiting can be argued both ways. 

When a diagnosis is dragged out, there is often relief with parents blaming themselves about having worried too much, being hysterical first-time parents, and the like. The parents want so desperately to be proven wrong about their suspicions. Alternatively, the diagnosis could be fairly quick and the reality accompanying this confirmation may be denied, met with disbelief, but most ultimately be digested and swallowed to facilitate quick, necessary self-education leading to an action plan. Literally, parents will experience all these outcomes, sometimes in a varying order, sometimes in a repeating pattern, sometimes in a “stuck” fashion and sometimes franticly. While the common orderly fashion is a possibility, it is rare due to the new overwhelming fear and the feeling that your whole child is being shoved through a funnel, creating an ever-narrowing number of possibilities for their future.   

With this diagnosis comes the beginning of experiencing a loss accompanied by a grieving process. Families in this process, while generally aware they have been struck by a tidal wave, do not place the impact in the category of loss accompanied by traditional grieving, though that is, in fact, what is happening. The loss consists of certain dreams and expectations, conscious or unconscious, that are now in question. Using deafness as an example, one has the anxiety and sadness of conveying this development to family and friends, wondering how and if the child will circle through familial life cycle events, as well as dealing with the many other emerging phenomena that rear their heads with each distinct disability. 

Questions begin to arise about how communication and learning will take place. Uncertainty as to how this will play out with the siblings and the family unit as a whole arises. What accommodations will have to be made? What will the financial ramifications involve? Will this improve over time or be a lifelong condition? What kind of time will it take, and how will the parent(s) be able to give appropriate attention to the other children? The list of questions goes on and usually without many satisfactory answers or results for some time.

Coping skills and resiliency become very important. These are difficult circumstances to navigate even if one has very strong coping skills and significant resiliencies. In addition to the professionals who are there for the child, the parents will more than likely need help adapting their coping skills to this new, unfamiliar situation. A professional (and many clinicians specialize in specific areas of child disabilities) will help parents to process this information -- not just the question of what will happen to my child, but what will happen to me, my family unit, the siblings, extended family and friends as a result of this diagnosis. Coping strategies for dealing with this new life reality, both in the short and long-term, will have to be peripherally determined but need to remain flexible as new information will always be entering the equation. It is  ideally recommended that parents seek the help of a professional if possible, especially during this time when so much needs to be processed and decided.

When your child has a new diagnosis, the parent(s) is so vulnerable, scared and questioning. As help is sought, the educational process is unfolding. Ideally, parents are learning everything they can relative to the child being able to cope and hopefully eventually thrive. The parents are building a network of professionals and other families who have had similar experiences. This network is extremely important as it will ideally see the family through the child’s formative years and often into adulthood.

Numerous families recount that the most rewarding part will invariably become a journey, whether short or long, made up of the other people they met along the way resulting in lifelong relationships of support. A powerful bond grows between the people in similar situations among those with whom you never in the past would have imagined you would share anything in common. They often turn out to then be the most special people you will have met during your lifetime.  While what seems so devastating at first, has many twists and  turns that can be life-altering in a positive way. I trust that many parents ahead of you on this journey will vociferously support this notion.