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.

5 Responses to Accepting Your Child’s Diagnosis

  1. Some comforting words and familiar feelings in this blog. For the most part, a good perspective.

  2. Kelly C

    What a good little read! I especially love the line that labels are for designer clothes and they will not define my child. Accept the war, but fight every battle as if it is the last.

  3. Pingback: Accepting Your Child’s Diagnosis | For Special Needs Children

  4. I agree with your words of acceptance. But death

    also goes through the stages of Denial, Anger, Grief,

    Bargaining and finally Acceptance and having a child

    with life changing challenges is not a death

    sentence. It does not have to be, for you or your

    child. I believe that even though most parents go

    through the same early intervention programs that we

    went through, not all parents know how or have the

    energy to follow through with what they are shown.

    Instead they give up and “accept” that their child is

    challenged, maybe severely or not so, if for example

    on the aspergers level. Now that education and

    medical professionals have termed it as the Autism

    Spectrum, they have taken away the imperative needs

    of the lower functioning and blended them with the

    higher functioning, to scale them on an even playing

    field.. . This was a mistake and I believe is

    actually a disservice to the individuals that live

    within these spectrum’s. You are correct in stating

    that the child is the focus and I agree, I always

    looked beyond what I saw with my eyes, and instead

    saw with my heart. Looking into my son, I was able to

    bring him to me. So your idea of acceptance is

    accurate only in the stage that you first have to

    accept your child, their diagnosis, in order to help

    them move in the direction of improvement towards

    growth and reaching those possible potentials. To

    fully accept, is to give up and not help your child

    to understand and be led towards who they can truly

    become. With these steps of non-acceptance, together

    you can overcome things you never would have believed

    or imagined! When my son was diagnosed, I was told

    not to be surprised if he would never tell time,

    could not count money or would never be able to care

    for himself. I was informed at almost 4 years of

    age, you have until age 7 to teach him as much as he

    will learn. I went home and said, to myself, not my

    son and we began. I purchased him workbooks that

    were like coloring books on math, reading, money,

    time and animals and I became the teacher. He still

    went to school, therapies, etc. but on extra time

    left over, learning on our time, was made into added

    fun! I drew pictures to represent the words he was

    learning in vocabulary, I made hangman out of words.

    I made word searches out of his vocabulary

    assignments. We read together constantly. I

    purchased, puzzles, interactive special educational

    toys. His room looked like a regular classroom. All

    the money that my son and I had, went towards his

    education. In third grade, he received “Scientist of

    the Month Award” at his Magnet School for Science and

    Math Technology that I had won for him in a lottery,

    that his name was drawn so he could attend. He was

    the best in his third grade at reading, spelling and

    math, because of his rote memory. He may not have

    always at that time understood what the words meant,

    but he could spell them, say them and he knew their

    pictures. Later, he learned the meanings of the

    words that he already had learned, the light bulbs

    went on and the words became language, in his older

    years. He now is learning to drive a car, is going to

    college, has taken Accounting, he got a “B”, he has

    taken Business Management, he got an “A” and is on

    the International Honor Society, with Kappa Betta

    Delta. He helps me with laundry, he sometimes cooks

    on his own, he helps me with the dishes, he can

    manage some household chores. His driving abilities

    are impeccable! Recently, he has even driven 18

    miles!

    My son still has Autism, he still has his moments,

    but together, he is meeting his challenges and if we

    had accepted what we were told and not fought

    together for where he is now, the things that are now

    taking place in his life, would never have been.

    My idea, start when we did. We began at 18 months

    old, with education, early intervention because of

    his diagnosis of speech and language delay.

    We want to make a difference for others…..and

    together we can! http://www.seasons-of-success.org
    Our head is not in the sand, for like the turtle,

    coming out of his soft shell, buried deep within the hot

    sand, we learned how to dig out…and are now heading

    towards the smell of the ocean, to take our first

    swim. Life is that ocean and with it their are no

    limitations….only what you decide to accept.

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