Accepting your child’s diagnosis is one thing, accepting the life it will bring is something completely different, and much more important
The title of this blog may seem to some, well, ridiculous, but not to a parent of a child with special needs.
Of course you have accepted what life has given you. We have to accept and do what we will with the circumstances that come our way and when given that diagnosis or label for our child, in time ,we had no choice but to accept it. However, “having” to accept and “truly” accepting are very different.
The definition of acceptance is basic:
Acceptance is when a person agrees to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit.
Implied is a willingness, a belief and an understanding of the reception. Also implied is the condition of not attempting to change, protest or exit. Given that definition and the totallity of the word, how can we accept without attempting to change or protest? We can’t ….but we can create our own definition of “acceptance” one in its truest form.
Acceptance takes time. Accepting a diagnosis is one thing, accepting the life the diagnosis will bring is something completely different and much more important. When I speak of acceptance I am speaking of accepting the full magnitude of the situation. The acceptance that there are some things you will be able to do to make changes, improvements, triumphs and gains and there will be others, that for no lack of effort, will remain.
The acceptance that your purpose in life has changed. Accepting life as you knew it has changed. Your day to day routine has changed. Your marriage has changed. Your parenting style has changed. The life your other children will lead has changed. Your comfort zone has changed. Your world has changed. Accepting the diagnosis is the easy part, its accepting the life unexpected that truly takes time and work.
There are parents who have been raising their special needs child for a long time. They are stellar. They are doing all the right things and giving their child the best possible care and treatments. That does not mean they have accepted and I see them continue to struggle.
Let me stop and say that in no way am I inferring that parents should not pursue every safe and beneficial option. I feel a parent should never give up and what may work for one does not always work for another, however, if the goal is to have a child without his or her disorder, in my opinion, acceptance has not been achieved. I am not speaking of curable diseases or those that cause pain, I am speaking of neurobiological disorders Autism, ADHD, Bipolar Disorder, Cerebral Palsy, Aspergers Syndrome, Tourette Syndrome, OCD, Anxiety Disorders and many other disorders that will most likely play a role in the course of their lifetime and in your lifetime. Although these disorders will wax and wane and change as the child grows, children usually do not grow out of neurobiological disorders, they learn to manage and cope. And so must you.
I am a big proponent for separating the child from the disorder. Often times it is hard for us to look at the child as the incredible kid they are and tend to focus on the disorders and behaviors that affect them. To be able to separate the child from the disorder is important in the acceptance process. It takes time, sometimes years to unravel a lot of the issues surrounding the diagnosis, it takes time to educate yourself and to adjust to your new reality. During that time, just like the parent, before true acceptance, the child may not be able to separate themselves from the disorder. They are frustrated by their inability to change and overcome their challenges and just be a “normal kid”. They are confused, they are fearful and they are overwhelmed by the world around them. These children are struggling at home, at school and on the playground. Until skills are acquired and gains made, they feel they “ARE” their disorder and it does not feel good.
To not accept the disorder and the life changes it brings may be sending a message to the child that “they” are not accepted. Care needs to be taken to ensure that words are chosen carefully and that “the child” is never substituted for the “disorder”. Trying to “fix” a child sends a message they are broken, damaged or a disappointment. I know, I made this mistake and it is why I share it with you. Years of dragging my child from doctor to doctor… therapy to therapy…. trying to “fix” her and change our fate was counter productive. I for many years thought I had accepted my life unexpected and it was only when I truly accepted did I realize why I struggled for so long. My hope is to keep you from that pain.
So, am I saying that we should throw our hands in the air and throw in the towel when first given a diagnosis, of course not. Our goal, our job, is to provide the best therapies, resources, education, tools and services possible to improve the quality of life for our children. Improving the quality of life and giving them skills to succeed in a happy, productive, successful and fulfilling life is different than denying the disorder and willing it away. The disorders and the disabilities are part of who they are – they are a part of who we are – accepting is key.
Accept that you have a lot of work ahead of you. Accept that your child is different. (And by the way, what child isn’t) Accept that for your child, gains and acquired skills may come at different stages and at different levels. Set attainable goals. Accept that despite every effort, every intervention, every therapy and treatment, progress may take time. Accept that progress may not come and the fork in the road in front of you needs to be navigated. A bend in the road is not the end of the road unless you miss the curve.
Knowing the difference between what you can change and what you cannot…. that is acceptance.
Knowing that labels are for designer clothing and will not define your child or your family ……. that is acceptance.
Knowing that change, although at times hard, is simply change and not the end….. that is acceptance.
Knowing and fostering that what you once feared was a curse may in fact be a brilliance…. that is acceptance.
Knowing that improvement is often measured by gains and not necessarily elimination …. that is acceptance.
Knowing that others ignorance is simply that…. theirs… that is acceptance.
Knowing that you have become comfortable in your new life, your new challenges, your new role and your new reality…. that is acceptance.
Accept what you cant change and change what you can’t accept. Trying to change the unchangeable is not the solution, in fact, it is the problem. Being happy doesn’t mean everything is perfect (or the masses perception of perfect) it means you have made a conscious decision to look past the imperfections and difficult adjustments in your life, accept them and live with strength and calm with your life unexpected. That to me is happiness.
Know that with every gain will come immeasurable rewards. With the negatives will come the positives and you will have a greater understanding of love, patience and compassion than most could ever dream of.
With acceptance will come the peace that all special needs parents need to continue on this incredible journey.