When I started my journey down the path of psychology I was granted an amazing opportunity to work with a little 5 year old that had been diagnosed with Autism. At the time (I was only in my 3rd year of varsity) I didn’t really have a clue about the disorder, but was told to watch “Rain Man” and get an idea. Well, that little boy was nothing like Dustin Hoffman in the movie – for one, he was gorgeous (and I cant say the same for old Dustin), but mostly he was in a world of his own and could not count all the millions of gumballs in a gumball holder merely with a glance. No, he struggled daily simply to make eye contact, let alone engage in a game. He got scared or upset and couldn’t verbalise his feelings, and he did not like to be touched though you could see he longed for comfort.
This was the first of many experiences working with children with special needs – from Autism, to Down’s syndrome, to the hearing impaired. While I simply loved being a part of their developmental journey, and having a hand in their growth and learning, I was also acutely aware of the fact that I only “handled” them for a few hours a day. Their parents took over for the rest. And yes, it was through these special kids that I met their even more special mothers and fathers and gained a glimpse of what it means to parent a special needs child. So in today’s post, and as per request, I thought I’de take a deeper look at how parents cope with their child’s “special needs” diagnosis.
I think the most difficult part is the knowing, right from the start, that your child is different. It takes a while to muster the courage to take him for a consult, and you normally start at the GP. Unless the problem is obvious, most doctors will be loath to give a diagnosis so early, and will send you home with the words “developmentally delayed”. As time goes by, the problem becomes more pronounced and eventually you find yourself in a variety of offices with a range of professionals looking for an answer. When you are eventually slapped across the face with a diagnosis, the result is devastating, confusing and sends you reeling into a state of shock. Relief at finally knowing you were right all along, but despair at realising the magnitude of what has been said!
- Families often slip into a state of disorganisation and neglect at this point. Questions regarding what you did wrong, how you will cope, whether you are adequate as a parent and what the future will be like all tend to surface at once. The best thing you can do for yourself at this point is ASK FOR HELP! Speak to relatives to pitch in and assist with lifts to school, meals etc. JOIN A SUPPORT GROUP and get as much information from others as you can.
Disbelief and denial are quick to follow. “Tommy can’t be Autistic, he doesn’t behave like Jane’s little boy” are some of the thoughts that may come to mind. Your child doesn’t fit the description 100% so maybe there was some mistake? Chances are there isn’t a mistake, but go get that second opinion if you need.
- Try not to compare your child to others’ or to children you read about in books. Focus on the unique nature of your child – s/he will be different. The sooner you are able to acknowledge there is a problem, the sooner you will be able to find ways of coping with it and assisting your child.
But acknowledgement will bring anger, sadness, shame, anxiety and grief. You will mourn the loss of the hopes and dreams you had for your child. You will fear whether or not you can survive what it takes to parent this child. You will be angry that this happened to your family and ashamed at the (irrational and untrue) thought that it is because of something you did / did not do.
- The best advice here is, do not be too hard on yourself. Cry if you need and get angry every now and then. See a professional if you need to talk. Start early on reminding yourself that you are just human and do not possess super powers – you will find yourself reminding yourself of this regularly in the future – you are not perfect and you do not need to be! You just have to be good enough! You are allowed to cry and you are most definitely allowed to have a bad day every now and then.
Processing the emotion really assists in reaching a stage of adaptation and will also lessen the intensity of your emotions. Now begins the task of finding the best help there is for your child. You have accepted his/her condition and you have processed some of your emotions, so it easier to start doing what it takes. In researching the help there is, finding the right professionals and getting your child to the right schools – make sure of one thing:
- That you don’t lose sight of yourself in all this. Focusing 100% of your energy on your child leaves very little for yourself and, if you and your family are to make it through this, then you have to be good to yourself too. There is nothing wrong with finding a competent and trustworthy baby sitter and getting out. There is nothing wrong with letting your hair down every now and then, or getting away without your child / children. You need some time to unwind and relax. Take care of yourself as well!
In all of this, remember too that professionals are quick to tell you what your child cannot do, how they will not be normal, how they can not speak etc. Keep focus on the things your child CAN do. Again, take stock of the unique attributes and character your child has, keep in mind the joy he/she brings and never lose sight of how well you have coped thus far!
I am not sure this post does the experience of parenting a child with special needs any justice. I do not have first hand experience of it, merely some “professional insight” (for what that’s worth) and a limited understanding of what it must be like to live with, care for, love and enjoy a child with special needs. As usual, please do feel free to add to the post – those with the experience are more in the know and I am sure have far more to share!
Untill next time remember:
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” (Albert Einstein)