Posted by: myautisticmuslimchild | November 9, 2012

Advice for Newly Diagnosed Family day#9 NHBPM

This is a bonus prompt for day #9.

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.


Responses

  1. Salaam sister, I applaude you for your positive attitude and the strength you have within yourself to fight the world for your little boy. I feel totally the same, but seeing it in words just reinforces my strength in looking after my son. JazakAllah for your wonderful post, it really helps to know there are other parents who feel the same as I do. When my son was diagnosed at the age of three, I just accepted it, that it was meant to be, and that is how Allah SWT wanted it to be, and couldn’t feel any emotion, I was just numb. I had never heard of Autism before and my knowledge was none. Like yourself I took on the fight mode and went in search of knowledge and information to help improve things in my son’s life. We were very lucky that there was a lot of help available for us, at the time. Early intervention was an immense help to us. I studied an Early Bird course for parents, it was held at my sons new school , funded by the National Autistic Society and was a Course for parents on how to manage looking after a child with autism. I took my 13yr. Old daughter with me and she gained so much knowledge too on how to help look after her brother. Health professionals were amazing in how they helped us in understanding about different therapies available and all the help available. Speech therapy and occupational therapy was started and we were signed under a paediatrician who was just amazing. I have spent the last eight years doing research on autism, googling, visiting social networks like Facebook to learn from other parents on thier experiences, and this has helped me to help my son in a good positive way. He was non verbal up to the age of six, and since he started his speech, it has been a big help to him. He talks now and we just love hearing every word that come from his mouth, well almost every word I should say, as sometime he copies negative behaviours too that he may have seen. It is very frightening that he can copy negative behaviour too, and I must say I am very over protective of him. The teachers think I am dotty, just a worrier mum, but I say I am just a Warrior mum. I will always fight to protect him, lately he will be joining an after school club to learn karate lessons, so this is a positive move in helping him look after himself. Coming back to he point of early diagnoses, my husband and his family found it very hard, as this was thier first grandchild, and my husband reacted in a totally different way, that he was in denial and angry too. It took him a long time time to deal with it, however since my son started speaking and talking to his daddy, this has helped my husband immensely and I feel that he saw hope for his little child, and this has resulted in a very positive outcome as they are very close now and do many things together and are very happy. I feel early diagnose and help is crucial if we want to help our children. It is never a dull moment in my household as my son is a wonderful individual who brings sunshine into our lives, and he is a blessing. Sister I just wanted to share my story as I was overwhelmed reading your post and had to have a good cry, don’t really know why, but just did. I have discovered a new magazine for parents, it’s called AUKIDS, and it’s about positive parenting for Children with Autism Spectrum Conditions, it is very informative. Here is the web address, http://www.aukids.co.uk. Sister I love reading your posts and always pray for you and your son, May Allah SWT give our children Health and Happiness in life. Best wishes, take care.

  2. Sister I just wanted to say that when I mentioned going on FB, I wanted to say that when parents are doing this, we must all be very careful about not giving out personal information about our children as we are responsible for thier protection and would not want strangers getting access to personal information about our chidren, the same goes for putting picture or videos on there, as I have seen many people do this, personally I always keep my privacy settings to family only, but still would take caution as the FB is very public.

    • ws Zarina, thank you for your comment. The more I hear from you the more convinced I am how great and protective mom you are. I respect you a great deal for all that you do for your family.🙂 May Allah bless you


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