Hello and Welcome to the Blogosphere,
Since this is the first topic we discuss I would like to just jump right in and get started. The topic is dealing with a Diagnosis. It was one of the most difficult times in my life finding out about my sons severe developmental delay. Then exploring the reasons behind the delay revealed Autism in my 2 year old son. Shock and panic inevitable followed the diagnosis and as the most difficult emotion to handle. First because of the overwhelming stories I had heard about Autistic children. Second because I knew the pain and struggle he would inevitable face because of my personal experience with Autism through my adult brother.
Thinking back on those emotions made me wonder if other parents of mentally or physically disabled children went through this same experience. Through a little research and some great luck I was able to find this study done by A. H. Graungaard and L. Skov about the coping of parents when they get the news of severe delays in their infants whether physical or cognitive. In this study they took 8 couples and their children and through a longitudinal approach followed their reaction and coping to this overwhelming experience.
The ability to handle the diagnosis was studied, three things made getting the diagnosis better:
1- The amount of time between when the parents suspected a delay and when they got the diagnosis.
2- A firm diagnosis rather them facing an unknown issue.
3- The amount of sympathy and concern from the doctor.
Following the diagnosis were several coping methods used to handle the seriousness of the diagnosis.
First was “retaining hope”, with a firm diagnosis the parents of disabled children were able to feel like there was an answer or a treatment for their young child.
Second Parents began “creating future images” meaning they thought of scenarios and emotions that would come to pass in the future and how they would cope with those uncertain times.
Third that there was a time when they” ignored the seriousness of the condition”; they would convince themselves that it wasn’t as severe or that it could be cured through special treatment.
Then they would “seek support” from family members and friends in order to cope with the serious realizations of the diagnosis.
Next they would begin to “concentrate on the possibilities” meaning they could see clearer what their options were for treatment and steps towards handling the diagnosis. Along with that came also the negative possibilities too.
Following they would “evaluate their beliefs” and see how beliefs will strengthen their decisions or hurt their progress towards acceptance.
Finally they are able to look optimistically toward the future when they “begin identifying positive aspects”. Some parents will go through all these methods or possibly just a couple depending on the personality and coping skills of the individual.
The most important thing to take from this study is that cooperation and trust between parents and healthcare professionals can make a world of difference in the acceptance and treatment of a disorder. So as you look at these coping methods you will see some of your own struggles with diagnosis in your child or others special children. The point is to realize it is normal to feel these emotions and to struggle with the diagnosis.
You are not alone and remember you are special parent to a special child.
-Crystal-
Sources:
Graungaard, A. H., & Skov, L. (2006). Why do we need a diagnosis? A qualitative study of parents’ experiences, coping and needs, when the. The Authors, Child: care, health and development , 33, 3, 296-307.
Thanks for such a great post. I have an aunt that recently passed away who was profoundly handicapped. My grandmother opened a home for girls with disabilities from moderate to severe and has been their primary caretaker for over 30 years. I have always thought that the diagnosis of a disability or delay would be a hard shock to cope with. Your son is a lucky boy to have a mother who educates herself to be able to help him to the best of his ability!
ReplyDeleteI think it's wonderful that you can share your personal experiences with us. Your honesty about your feelings and emotions about your son made this post stand out to me that much more. I don't have kids yet, but I imagine this would be an extremely difficult experience to go through, as you and research suggest. Although I hope I won't have to go through this, it's nice to feel I have some information about it.
ReplyDeleteIs there a readily available listing of sources for reference and support groups for parents of children with special needs? If there is could you post it to your blog, for parents looking for answers to their questions?
ReplyDeleteThanks for this post. This has helped me a lot in understanding that having to take care of someone with a disability can be a challenge, but there are ways to handle the situations with comfort. My sister has an autistic son and he is the cutest thing ever. He wont hold still and barely talks, but after this post I want to be more of a part in helping my sister and her family out. Your post mentions in the "Then" section to seek support from family members. I am going to try and be there for my sister more considering I also one day want to be an Occupational Therapist. This will be a good blog for me to follow. Thanks!
ReplyDelete~Kim