Posted by: myautisticmuslimchild | December 15, 2010

Lets Get Personal!

In the past, I thought I would be teaching Amin to be prepared for his future life, but in the end I was the student.  He taught me what really matters in life, what is really valuable, which is often overshadowed with superficial views.  He helped me to see life with all its beauty and struggle in it.  All that I valued in life before Amin’s diagnosis had to be reevaluated, and put in a different order of priority.  I realized that there will be times of victory as well as times of failure in our lives. Before that time I could never accept failure for myself or for my children. This was a new and very scary experience for me, but it taught me something more important – life is full of trial and error and we learn and grow from our failures, and those experiences make us stronger.

Someone asked me “did your life change overnight after his diagnosis?” Honestly, for a long time my answer had always been “yes”. But now that I think about it, it didn’t. Between the symptoms and the diagnosis, our life started to spiral out of control over time.

The other day, I had a dear sister visiting me. She told me that her friends told her that they would love to see her, but only without her autistic child. They slowly disappeared and became unavailable for her. She blamed her child’s autism for losing her friends.

Many of us have experienced these type of feelings, but I realized one day that I did not lose any friends. In truth, they were never my friends. When someone tells me “come over for dinner, but please find a babysitter for your autistic son first”. Well if my son is not good enough to visit that house, obviously I am not good enough either.

I have a few close true friends now that I value, and they are always there for me when I need them. One must realize that autism will change your life, and it is up to you how you look at it. If you blame everything that happens to you on autism you will become resentful toward your child.

An important lesson I learned was that most of the things that I was taught were negative, actually worked out for the better for me and my children.  Sometimes we do not do housekeeping in our lives, and after a serious event we are forced to get rid of some of the trash that maybe lingering in our life.  My point is that we should not get so sad and depressed about losing something that was never ever ours, but instead look forward to new and better friendships that can enrich our lives.

Taking care of an autistic child may make you feel like you’re swimming upstream, but it has very unusual benefits. When you feel that you are at the end of your wits, you discover something amazing about your child, and that gives you more energy to continue.

Another question that pops up way too many times, “have you ever been embarrassed or ashamed of your child or his behavior?” My answer has always been, and will always will be, that I have been disappointed of him at times, but never embarrassed of him. He is my son, and he is autistic. He struggles with things that others take for granted, and that makes him only courageous for his struggle.

I like to think that I have become a much better person since Amin’s diagnosis. I can see things in a different perspective. I notice and appreciate the little wonders of life.

Patience was instilled in me with such a force that I was even able to restrain myself from going after a person who told me not to do CPR on my son when he stopped breathing. Yes, someone told me that, and their argument was based on Amin’s diagnosis… autism.  As you can see, we are not going to be spared from the cruelty of the world, but we are certainly being spared from the ignorance that so many people are carrying.

Another ignorant question I have to deal with too often is when someone trying to be caring toward me tells me, “I just feel so sorry for your daughter, she has to grow up with an autistic brother. She must be missing out on so many things, how will she ever get married?”  For those of you who always ask this question, disregarding my answers and requests to stop talking about this issue, please stop.

The answer is always the same and it will never change. Safiyya became a mature, compassionate young girl, who probably has more tolerance and an open mind, more than others in her age group. See the article I wrote about Siblings of autistic children.

I would have never chosen this path for my life, but I was chosen to walk it, and learn from it. God had blessed me with a wonderful boy who is autistic and a wonderful girl who is typical. I experienced both, and I was given the blessing to understand and appreciate all that they do, and to realize and live the joy of every moment of my life.

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Responses

  1. MashaAllah, this time you have certainly touched a nerve (as you always do but moreso this time). How right you are about losing friends and I too, have thought that perhaps they were never my friends in the first place.

    Recently I have been blessed to go for Hajj (may Allah accept this fardh), I was able to leave my children with my wonderful parents. In 26 days they were able to feel being ‘me’ and they have been able to see both Sana and Hamaad in a different light. I left my children for the very first time – my husband and I have always been with them but leaving them in the amaan of Allah and my parents I know that when I am not there they will survive which was so so important to me

    My mum too now understands that there are limits to how children with autism learn and from my time away I have found that after my parents my siblings will NOT be able to cope with my children therefore I know that I need to make arrangements for when I, my husband and my parents are not around.

    Children with autism need to be independent as much as possible purely so that they do not burden others with their needs. Alhmadolillah I thank Allah for every step we take towards independence (they may make a mess whilst the independence comes but it is a very important step).

    Jazak Allah for your wonderful posts.

    • Asalam Aleikum, Thank you for the comment. I felt this issue need to be addressed , because I see so many sisters getting too depressed over this problem. Unfortunately people do not realize what it takes to be a parent of an autistic child. Once they experience it first hand they either stick around and eager to learn more or simply run.
      M main goal is for Amin to be independent and self-sufficient. With Allah’s mercy I am hoping to achieve that. May Allah protect your children and give you success in teaching them independence.

  2. Interesting and informative post My Autistic Muslim Child .
    Thanks for helpful article. Me pleasure to read your thinks. Cheers

  3. Excellent post mashallah and I honestly think most of your comments don’t just apply to autistic children but also other disabilities as well. A lot of people I’d thought of as ‘friends’ disappeared from my life when my illness hit so I can see some parallels. I also relate to what you mean about having to reassess your priorities and your sense of what’s important cos’ I had to do that too. I was practising well before my illness hit, but now my perception of Islam has differed as well (not in a good/bad way, just different). There were many times I resented the isolation of losing contact with the people who I thought would be there, but since then alhamdullilah I’ve learned to appreciate the few people who stuck around for me.

    I hope you don’t mind me saying this, but I think the marriage question is a valid one. One a Muslim forum a few months ago, a sister wrote a post on there saying that her father is refusing to allow her or her sisters to get married, because he is concerned that if they get married and settle into their own families, then no one would be left to look after their younger brother who has aspergers (can dress and cook for himself, but has major difficulties with social interaction). I felt very sad for her and annoyed at the ignorance of her father, who withdrew his son from school (I don’t know why but my guess would be school bullying issues) and kept him at home, thereby denying him the right to learn more about the world around him and find a way to adapt. I felt that this was an injustice for those sisters, who were expected to forget to have desires and aspirations for their own future because of their dad’s anxiety regarding their brother’s condition (note that I don’t blame their brother for this problem but rather I blame the father for making matters worse). In fact, if you don’t mind, I don’t know if the sister still uses the forum but I’d certainly want her to see this blog and contact other Muslims to find out how they manage their lives through all this.

    I wont ask you the same question about “How will your daughter get married”, cos’ the answer to that is already clear from your posts. You are not bogged down with the same narrow mindedness that is so prevalent in our community in which an ill/disabled family member is some sort of ‘burden’ that curses the lives of everyone living in that family.

    I know first hand what people are referring to when they ask about embarassment, cos’ there have been times when it has been clear that my mum is embarassed by me and my condition even though she’ll never say it out loud- but I know it when I see it. She has a very strong desire to portray a certain image of our family to the community. Initially she tried to hide my condition from people until I literally forced the issue in public- she was angry that I did that and became quite emotionally abusive about it, although if you spoke to her, she’d tell you that she supported me throughout lol.

    Neelu

    • Thank you Neelu for this comment. I always like to hear from others who experience something similar. It is very unfortunate when the person who should be there to support and help feel the shame and embarrassment. I ignore everyone who even touch this subject, and honestly (I hope you do not take it personally) I do not have respect for people like that. God give me a child , he is what he is and it is my responsibility to give him the best and care for him. Being ashamed, being resentful is like telling, God give us something damaged. It is not so. From your comments < i see you are a very well educated intelligent person. If anything she should be proud of you. I am proud of you for being so open minded, and for taking your time to comment. All of your comments are very valuable for me and others. God bless you, and know you are loved.

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