Autism Journey

The time is moving fast. Day by day years, are going by as I hope against hope. Hope remains but the time has flown by. As a mother of an autistic child I remain in hope that today is the day, I could find a break through to reach my child, to reach his thoughts, to find a way to communicate with him; that will make it easier to teach him daily life activities which were so easy for us to learn.

It is heart breaking to see that my child is soon going to reach his adolescent years as a baby.  Although, unhappy, with the progress of our journey I cherish every moment of our autism journey together.  I’m very proud of my son and thankful to god for choosing me as mother of a very special boy, his beautiful smile removes my tiredness gives me strength to go on.  His bravery in tolerating the difficulties and pain he has to go through being different and not being able to express himself makes me brave enough to take care of him, my home and also to face the disturbing words of people who don’t let go of a chance to press where it hurts.

When autism strikes you need to brace yourself to the outcome of it. As here there are not much opportunities for my son to go to a school or get treatment we have always been planning to move to another country but some suggest that it is not good to uproot your life and move to another place with an autistic child but as I see it from the moment that my child was diagnosed our life got uprooted now we don’t really belong anywhere accept autism community.  There might be some parents lucky enough to get help and support from family, friends and neighbors but in Asia I doubt that there would be many such lucky parents.

In where we are

It has been almost five months now that my son, and I have been living in this country that we have moved to.  Here there are some schools and resource centers, which provide schooling and therapies for autistic children.  We have been to almost all these places and still we have not found a school where I am confident enough to leave behind my non-verbal autistic child for even few hours.  As I find most of these places are overcrowded and the teachers have more kids than they can handle.  Therefore, I have been taking my son to therapy sessions in hospitals and resource centers.  Here what I find is that each therapist in the hospitals belongs to a circle. Each one is in connection with a resource center, which they run or which they work for and the doctors (pediatricians, psychiatrists, neurologists) connected with that resource center are the ones they want to send their patient’s to.  For foreigners these resource centers charge a registration fee heavier than the locals do which is alright for me as long as they provide the services they assure. But after the registration is over the regular therapy sessions start to lessen they are unable to give appointments as they promise.  

As for my son he likes to go to therapy sessions but part of his enthusiasm is not there as he misses his father. But there’s something that makes all his anxiety and sadness disappear. That is  when he gets to ride in a three wheeler. Three wheeler autos are something he loves to ride, which is not present in our country. So that is the highlight for my son as we live here. Soon his father is going to visit us but I am not telling this to my son yet because he will get too anxious in anticipation.

Hoping for the best

As autism prediction rises to 1 in 88 children still there’s no hope and not much awareness in where I come from.

 It’s been a long time since I’ve written in this blog dedicated to my son.  There’s been a political crisis in our country but it has nothing to with my not writing in the blog but it surely diminishes the slight hope of light seen for children with autism too.  There never was much help, treatment or intervention available but the ousted government was bringing development in all areas fairly fast.

As for my absence from the blog, is simply because of my frustration and despair that there was nothing happening and there was no change in our situation my son has sat at home for two years but now again we have moved to neighboring country me and my son. At least now I can take him for therapies. So once again my spirits are up and hoping for a good outcome.

Firm bonding between child and mother

Since a special day is approaching, a day special for all mothers.  I would also like to share some of my feelings and experiences as a mother of an Autistic child.

Metaphorically a child never grows up for a mother but according to mothers a baby grows too quickly and gets engaged in their own obligations. The older they get the busier their schedules turn out and the mothers are left remembering the beautiful memories of their children’s childhood. But for me literally my baby is still a baby. So, on a positive note I convince myself to be glad that my child is always with me and the firm bonding I share with my child is something very special. The reward I get in return overwhelms me. The reward for me is my child’s unconditional and unlimited love .Of course it would have been great if he could learn everything like a typical child of same age and got busy on his own but for the time being I accept my child as he is and I cherish all the quality time I get to spend with my child.

As the emotional link between a mother and a child starts much earlier than the child’s entrance into this world.  It has been found that a hormone in pregnant women can tell the level of bondage the mother would have with the baby. Some mothers seem more attached to their children it's now a known detail that a mother and child’s bondage can be predicted by the level of oxytocin in pregnant women Oxytocin or cuddle hormone is considered as a great love hormone which leads to trust, sexual arousal, attachment and bonding. The level of attachment between a mother and child is defined by four aspects of interaction that is gaze, affect. touch and vocalization.

A guest post by me

Check out my guest post in Hip chick's guide to PMS, pregnancy and babies , a guide to all things about pregnancy, baby, and women’s health. I’m very thankful to DP Nguyen of Hip chick's guide to PMS, pregnancy and babies, for inviting me to write a guest post and also grateful for including the subject autism in her mission to create awareness amongst women by advice and information.

In my situation coping with the tensions that comes with autism and in frustration of the fact that my child is losing precious time without proper help, you may imagine how my frame of mind would be but finding new friends and being appreciated gives a much needed boost to my confidence. So once again I thank Hip chick’s guide to PMS, pregnancy and babies for publishing my post.

Offensive experiences in living with autism

As a mother of an autistic child I also have been through many unpleasant situations where people were rude, offensive, abusive and ignorant to our circumstance.

Since Autism therapy is not available in our country; whenever possible we take our son to a neighboring country for therapies and evaluation.  On one of those visits in an International Airport we were being body checked by the airport security,  after my check I looked over where my son and husband was and I saw my husband was alone I was confused thinking where my son was. When my husband saw me  he told that our son has wandered inside alone  as soon as I heard this I ran inside but my son was nowhere to be found my husband came after the check and told that he was holding my son’s hand but the security officer told him to let go that body check can be done for one person at a time my husband said he told repeatedly that our son is an autistic child and might get lost but that security officer didn’t listen, so he had to let go. Frantically we searched for him in the duty free shops nearby and luckily I found him in a corner of one of the shops engaged in his hand flapping.

In another incident, we were in that same country. My son loves to ride in those auto rickshaws used for transport in some countries. Me and my son went for a ride in one of these rickshaws and when we finished our ride the driver doubled more than agreed fare when I started to argue he got hold of my son’s hand and pulled him out and held him by the shoulders saying that he won’t let go of my son unless I paid him. My son didn’t realize what was happening. At that moment my main concern was to free my child before he got upset I grabbed the man’s hand while screaming and somehow I don’t know where I got the strength I freed my son  and then paid him what he demanded he was an elderly man but still I’m a small person by built. I did shout for help from the audience on the road, who were enjoying watching the scene. No one came for help maybe because I was a foreigner or they just don’t get into other people’s business.

Well it’s sad but true that some people get a feeling more superior and a satisfaction by taking advantage or bullying the weak and the vulnerable.

The day I became a mother

I became a mother on a sunny Thursday morning. My son was delivered by a pre arranged cesarean. He was a beautiful bundle of joy. A healthy new born baby. My husband, I and the whole family were very happy with our first born child. As a baby my son completed his milestones like any  typical baby but he did not babble, he did not sleep at night and his drooling continued.We didn't realise anything was wrong until he was diagnosed. He did have good eye contact and played with toys when he was a baby  but later he lost eye contact. Now he has regained eye contact and stopped his drooling but still he is non-verbal. 

Being my son’s mother has taught me many things and made me learn things I never knew before. Like cutting hair, my son hated to cut his hair so much that it became a very difficult task so I learned and started cutting his hair myself in my own way in my own time the way he doesn’t get much upset so now it's not much of a big deal.

My son changed my life and he is the most special and best thing that has happened in my life.

For some....healing has nothing to do with illness

After diagnosis it took me sometime to realize that I need to devote my life helping my child but the desperation and frustration overwhelms me and yet the improvement also brings invaluable joy. Still I need more healing to defeat the emotional turmoil which disturbs me sometimes. 

 

Healing is the end of an illness. But as it is for some people healing has nothing to do with any illness. The word healing and its implication give different meaning to different people. It depends on what dilemma the person is engaged in. Healing is overcoming the pain and depression by accepting the fact that what is done is done what has happened cannot be undone.

If there is a wound however it hurts medication have to be put over it to heal. When a wound heals still the scar remains and time only fade the mark away.  Likewise any emotional healing can be overcome by doing the best possible at the present time. 

Someone important

You are the one who's important. It's only you who can love someone so much. It's you someone loves very much. Look into those eyes; see the shine when that smile is for you.  It's you who knows everything when no one else knows anything. It's you who think of each small detail.  It's you who remember to do this and that. It's you who manage all at once and make everything possible.

But what if you were not there? What if you have to go? If someone else takes your place can she do everything like you do? May be she can but she can’t love as much as you do. So why do you have to go. You have to stay for that special someone the one you love so much.

As you take care of everything you need to take care of yourself too.  As you manage to think of what is good for everyone else you need to do good to yourself too. You need to be strong, healthy and youthful.  All these are so much important because you need to stay back for someone. someone special, someone special with autism.

This is what I tell myself when I start cutting short whatever I need to do in order to save time. It’s not easy when I have so many things to do so it’s easier to grab and eat just something when I’m famished. Still I have to be determined because I’m aware that I’m very important in someone’s life. I am important in my autistic son’s life.

Looming Fear

 

Once again I’m worried thinking about my son’s future, the inevitable fear deep inside the heart was brought up today by an incident that happened in the capital today. An under privileged young woman and her mother died in a fire. They were trapped in a room. The news of such incidents make the whole day gloomy. I’m frightened of any possible disaster because when disaster strikes children and adults who need others help are helpless in such situations, where everyone runs for their lives. I watched such an upsetting interview from a Japanese survivor also.  She told about her underprivileged niece being alone at home when the Tsunami came, she said that her niece wouldn’t be able to get out on her own and later when she came back to look up where her home was there was nothing but mud left. I know it’s all about one’s own fate but still one cannot get rid of these thoughts so easily. Well… I’m afraid I can’t.

There’s always the fear of autistic children or adults running into an accident. If somehow an autistic child or adult manage to wander outside then any parent would go berserk with worry until they find their loved one. Being an autistic child’s parent is like walking on eggs there’s always a looming fear inside the heart.

Online is my only source

Today I’m going to tell you about me not the boring stuff just a little summary. I’m someone who takes pride in being a daughter, a wife, a sister and a mom. After my education I started working at an early age. I met my husband through  work. We were very happy when we were blessed with a child and we were so devastated when our child was diagnosed. But I haven’t lost my spirit I have taken this challenge of god full on as far as my ability. I was in my sixteenth year of service when I couldn’t take it anymore and had to leave my job to dedicate all my time for my son. After giving so many years of my life in serving the government here I am just like any other house wife who have been taking care of their family all along which now I wish I also should  have done.Once I was a trained professional but today I’m a stay at home mom with no way of providing treatment for my son.

I come from the sunny side of the world. A place remote and unique, where the latest modern technologies, applications, vehicles are used and available. People follow the latest trends religiously but adequate health care, higher education fresh fruits and vegetables are out of the reach for common people. All along we have been taught and expected to show a bright face and hide our depressions. Well I can’t complain since politically we were in a pause for a very long period of time. Now that everything is being restarted all over again the subject of my concern would take time to surface.

And time is not what I have, every passing day of my child’s life is agony for me knowing that my child is losing precious time without proper therapy and I’m very thankful to the source called internet that I have been able to reach and collect information to help my child on my own and reach out to the people who are in the same situation around the world and gain knowledge. But there are so many areas that my child needs to be treated professionally. When I read about the facilities and services available in other parts of the world for the children like my son I wish my son could also have access to such help.

Marriage and Autism

Once autism is diagnosed the whole scenario in the family changes. The relationships tend to fall apart by the stress that comes with it or for some people it further strengthens the bondage by the camaraderie of having to face a catastrophe together.  

For a husband and wife’s this could build a rift between them and rip their lives apart. If they start blaming each other or leave everything on one person’s shoulder, when the husband doesn’t want to participate in taking the child to therapies or home plan activities for their child, or if the wife can’t make time for the husband she has many things to take care of for which 24 hours seem too short and her mind is always on her child and her chores her busy schedule. All or any of these reasons might get bigger and bigger and eventually burst open at one point. Then the marriage on the rocks would see the end to it. If the parent’s part their ways how will they explain this to their autistic child? The experience and the changes that bring with it might be a setback to the child’s progress.

On the other hand if the husband and wife are true to their commitment, they share the magnetism of sharing, they share their feelings and fears together they can grow and come out strong and strive together in all the difficult situations created by the word autism and if they become each other’s strength their strength would support help them to gain the compulsory spirit to overcome. When you have an autistic child accepting support from your spouse and giving support to your spouse can patch up your relationship.

But as a wife and mother of an autistic child I know all this is easier said than done. I’m also trying hard to cope with my routine trying to keep my concern, my chores and my stress out of my husband’s way because his approach and my approach clashes when it comes to treating my autistic child but I understand how important a place my husband holds in my child’s   world and in my world.

Comparison with other children

Watching my son and peers of his age I do observe and compare the difference between them. This makes me understand the gap and the extent of effort we still need to put on to achieve progress. It also makes me aware of things that I could teach my son firstly or easily. While I observe my son at the park I notice more easily the good or bad small things that my son has newly adopted.

Comparing your children with other children can be misread and objectionable to other parents so I make sure not to stare too openly.  

I understand and agree the fact that it’s unfair to compare your child with another autistic child, since each autistic child’s features are different and their progress speed is also different but one thing I have experienced is that my son tries to imitate physically challenged children when he spends time with other autistic children.

Earlier it saddened me also to watch children much younger than my child leaving him behind and growing up but now that it’s been a while after I came to terms with  autism I understand I have to focus only and only on my child’s growing up.

Weird myths about Autism

I’m sure you too must have heard some sort of weird myth about autism. 

There are many astonishing myths that people believe as the cause for autism. These relate and differ according to people’s frame of mind and beliefs. As far as I’m concerned I don’t believe these myths have anything to do with my child’s autism, but since myths have an intriguing way about it; I would like to share what I have heard.

Someone’s envy or evil eye must have caused it.

Some people say,’He’s such a beautiful child I’m sure someone’s envy must have caused it’.

Some people think envy of parents of autistic children might cause autism to their children.

Some think that parents of  autistic children might envy their normal children. As a mother of an autistic child my feeling is that I would never wish any mother or child to go through what my child and I am going through.

Result of black magic.

Since many autistic children start developing autistic features around the age of three, some people say that the child had no problem earlier so it must have been the result of black magic. 

The child is possessed by the evil spirit.

Some behaviors of autistic children like flicking the eye lids, looking sideways, speaking to self, hands flapping etc. Some people interpret these behaviors as the child is connected to some other world or spirit. 

The father or mother must have committed a grave sin.

This is also some people’s view but the one who knows the truth about everything would know what is the cause and reason better.

Unanswered questions

 I  wish  my  child  could  voice  his  gestures  of  expressions in  words.  I  wonder   how  many  questions he  has  for  me.  If  only  I can  hear  them  I  would  do  anything  to  fulfill  his  wishes . I  may  not  hear but  I  can  feel his  questions.

Living in present

 I  used  to  get  very depressed  whenever  I  got   a  moment   alone  to  think ,  my  mind  got  busy  with all  sorts  of  questions,  am   I  doing  everything  I  can?   What’s   going   to happen   when   my   son grows   up?  The more  I  think  the  more  questions  keep  coming  into  my head. As  time  passed and  I  have  come  to  accept  the  situation  and  got  more used  to  the  situation,  now  I  don’t  think ahead  anymore I live  my  life  in  present.  I  don’t  want  to  remember  how  it  felt  when  my  son  was diagnosed  or   worry about  how  soon  he  is  going  to  achieve  this  or  that.   I  have  set my  heart  and  mind  to  put  all  my  energy  and  effort  to  do  whatever  I  can  for  him  on  my own  taking one day at a time. Preparing myself by gathering  any  information  I  can  get  and  looking  out  for  any  opportunity or help for my son which he is very much in need.

Accepting my son's autism

Accepting my son's autism was the most difficult yet the most important thing as I believe. I have accepted him as he is  and I’m trying my level best to get into his world and bring him to my world but there’s something that is weighing  my efforts, it's my failure to convince others to accept my son and his situation. Yes, some of them have accepted him in their own terms and they do advise me from their vantage point that we should plan another child who shall be there for my son when we are gone and many think we are wasting our time and money in vain.  Our whole world changed with my son.  The way other people view and regard to us. Some take it emotionally and don’t have courage to confront us. Some don’t know how to deal with it or some feel that we might envy their children or some are ashamed that there is someone not normal in their family and some try to point out one way or another who is to blame for the cause to my child's Autism from their point of view.  Due to these reasons as the years pass our friends and family members are getting further  and further away few remain who understands and supports us. This type of approach may depend on the society we live in, maybe we are unfortunate there as well.  

Frustration

Since  my  son  is  non  verbal  there  are  times  he  gets  frustrated  when  I don’t  understand  what  he wants  yet  he  doesn’t  get  angry  or  cry.  He  usually  expresses  himself  with  his  eyes  but  sometimes I miss  his  look.  I  get  frustrated  when  I  miss  that  look  or  when  I  miss  the  timing  which  I  was supposed  to  do  something  for  him  or  when  I  don’t  get  his  cooperation  or  when  I  fail  trying   to train  him  in some way  and  most  of  all  when  someone  blames  me for his lack of progress.   Frustration   and  helplessness  goes  together  with  autism  but  no  matter  what  I  feel  inside  I  have to  smile  for  my  child,  I  have  to  sing  for  him  and  go  on  with  my  routine  since  keeping  to  the routine  is  important.   I guess every mom mentally  prepare  herself for child birth with all her might, as armoring for a battle ahead and the spirit remains through her entire life wherever and whenever it concerns her children.