Advice for newly diagnosed family is something I wish someone had given to me.
Many times we wonder about things and want some answers, want a sense of direction, yet we are still scared deep down of the answers we almost already know. We hope that we are wrong or crazy, and just seeing things, and the trouble will go away. We sometimes want to put our head into the sand like an ostrich, thinking out of sight out of mind, but unfortunately autism is not going away with that approach.
My advice to everyone, if you see anything that troubling you with your child’s development, health, go find out what is the problem. They may say you are an overprotective mom/dad, and you can go on with your life. But there is a chance for more and that might not be what you want to hear.
8 years ago, no one believed me that my son’s sudden change can be anything serious. In my heart I knew the truth, and I was scared to death, and being alone with my fears without any support did not help the situation either. I was even accused by a person close to me that I have a Munchausen syndrome. Believe me I would take that diagnose for myself any day over my son’s autism. So, I thought I need to know what is really happening to Amin. Back those days, it was not so easy to get an official diagnosis, especially he was only 13 months of age. The Texas Children Hospital gave me an appointment to evaluate him 2 years from the date I called. That was unacceptable for me, so I found an alternative, which was not as easy as it sounds. To make a long story short I got the dreaded diagnosis within a month, and it was not a Munchausen syndrome for me, it was a diagnosis of autism for my 13 month old son. As I heard those words, and looked at the doctor, I could not help but just holding on to his hands, knowing we will have to walk through life hand in hand to get through this. It was purely devastating. I felt like I died over and over again every time the doctor used the word autism.
Still, knowing the truth is better than not knowing what is happening with the child. Many people hearing the truth goes int the fight or flight mode. I used the fighting mode, which I really encourage every family with a newly diagnosed child. The other one is not an option. Just to know what is going on gave me an extra push to spring into action and look for solutions.
So, my number one advice is, know the problem.
Than acknowledge the diagnosis, accepting doesn’t mean that you are giving in. You just get into a fighting mode and you will do anything in your power to help, to heal, to make it better.
The next step is to educate yourself about the disorder, illness, what are the treatment options, what outcome it maybe.
Furthermore, get involved with support groups in person or online. These groups offer some very valuable help in every possible way.
Get all your family members involved, and have everyone on a same page with the child’s therapy, education, diet and all medical needs. When everyone around the child is working together, and no one gives into their ego, you will see amazing results.
Just know, you will make mistakes along the way, the mistakes we make teaches us to be better, more efficient, and more successful.
My last advice is never ever give up hope. You are your child’s advocate, if you do not stand up for him/her no one will . If you give up hope , no one will ever re-candle that spark again. It is not easy to stay positive, many times I lost hope, that did not result in giving up fighting for him. Just keep going as long as you can, if you can not walk than crawl, but never stop moving toward success.
In the beginning you will see how many true friends you have. If you lose many of them, do not waste time crying over the loss, because they were never true friends to begin with. If you have only one, you can consider yourself lucky, but there is a good chance you may never keep any from your old life. Do not be sad about it, because from here on , when you make a friend they will accept you with what you have, and you will never have to explain anything to them.
Newly diagnosed families have to deal with way too many issues besides the child’s diagnosis. It is never easy to deal with disorder, illness, disability, but if the family comes together in this crisis, it will eliminate a lots of hardship. If you find yourself alone , where family and friends abandoned you, just know when God closes one door, a new one will open for you, so keep moving forward never look back.
The diagnosis is not the end of the world, it is a new beginning with new opportunities. It is up to you what you do with this test in life. You can turn it into something positive, or you can give in to grief and make your life miserable.
The choice is yours, make the right decision.