Our journey through autism

Posts tagged ‘support’

A Dream

I have a couple dreams I wish would happen. I wish for an accurate cause and cure for autism to be known. A lot of parents of autisitc children or any child with a disability would say they “wouldnt change their child even if a cure were discovered” Maybe I havent reached that state yet, weak faith, I dont know, I want a cure for autisim. If my son’s sweet, kind, forgiving nature is a symptom of autism then no I wouldnt want to cure that. But I would love to have not gone through that difficult behavorial phase, not to go through the devestation and stress of getting the diagnosis, I would love to be able to understand my son whenever he told me something, get rid of the frustration from both sides, cure his picky eating and limited diet habits, eliminate the odd humming and pacing. I would like a cure, so he would never be bullied for being different, a cure so that he can have friends and meaningful relationships, a cure to avoid stares or weird looks from others. This is all a dream, I cant go back in time and change anything and if a cure really were discovered or created I dont know whether I would line up for it or not, if it were to happen for real.

As there is no cure yet, this dream seems more attainable. Like I mentioned before, doctors and other parents will tell you once you get the diagnosis to seek a local support group, to talk with other parents that have been there, to find children similar to your child and set up play dates. I couldnt agree more with this. Most parents turn to their house of worship. I’ve read about several church based services, daycare options, playgroups for families with special needs. Here in Atlanta there is a large Jewish Autistic community also offereing the same services. Sadly there is no Muslim autisitic or special needs community for me to turn to. I’ve searched online countless times and find that Islam and autism dont go together for some reason. I’m seeking fatwas (religious decrees) about what my son’s religious responsiblities are, how much is he accountable for and what my role as a parent should be with teaching him his faith. I’m looking for other parents to learn from and see what they’ve done. They either dont want to communicate or are not on the world wide web. Its in the culture of many Arabs or Asians to see a disability as some kind of taboo, not seeking a diagnosis or hiding the child in shame, they lack awareness and its been said a lot that they think autism is  a form of mental retardation, which it obviously is not.

I dream of organizing an awareness campaign with the local mosques, maybe hiring a speaker from Autism Speaks, printing out fliers or brochures, having recources translated into Arabic or Urdu,  explaining to parents what the early warning signs are, urge them to have their children evaluated, that its nothing to be ashamed of, and maybe then I’ll find other families to form relationships with. I also wish that Arab doctors would get the training to recognize the signs to explore the area of developmental science that treating a child for physical illnesses is not enough, for Arabs to become therapists and special needs educators. Islam teaches us to be accepting of all races, ethnicitys, social backgrounds and of course mental capabilities, but sadly they show discrimination, they need to learn neuro-diversity. Its a term I learnt when I started joining the social networks of autism. It means that the same as we are accepting of different skin colors we should also be accepting of the different neuro development of others, of autism, Aspergers, Tourette, ADHD, these are all neuro-developmental disorders. Just like the color of their skin they were created this way and cant help it, its not the parents fault its nothing to be ashamed of. Since my son’s diagnosis, I’ve become more accpeting, when I see a child misbehaving in public I no longer think to myself “these parents have spoiled their child” I say to myself “this child may have some kind of disability and the parents are doing the best they can”.

I’ve met a mother from a Facebook group with a 4 year old son, with suspected Aspergers (she still hasnt received an official diagnosis) she was saying the same about not finding other Muslim parents outspoken with their children’s special needs, about the Islamic community’s lack of awareness. Her son’s application for a Pre-K program at an Islamic preschool was rejected, they said they do not deal with special needs, they said this without even understanding what his needs were. He has since been placed in a private pre-K school, in a regular class with a once weekly special needs teacher checking on him and he’s doing great masha Allah. This mother also dreams of starting an awareness group and maybe one day the both of us can make it work bringing awareness to the Islamic community and helping other parents seek the support they need.

This is the autism awareness ribbon, and April is national Autism Awareness month.

So what is Autism?

You’d think this would be the very first post on this blog, but I wanted to write it in the order in which we went through it, following our journey from start till today. I’ll be linking to several websites for more accurate description of this disorder.

What is autism?

In short autism is a neurological disorder in which a child has difficulty communicating and has social deficiencies, it is a spectrum disorder meaning there are so many levels to the disorder, no 2 children are alike (even twins), symptoms vary, severity of disability varies also the age in which it is first detected varies but its usually between 12 months to 3 years.

It is estimated that autism is prevalent in 1 out of every 110 children, with boys four times more likely than girls to have it. The rate of detection and diagnosis is increasing steadily over the years, this may be due to a better awareness of the disorder and sooner diagnosis than previous years.

What causes autism?

This is the question everyone wished there was an answer to, until today they dont have an accurate answer to it. There are so many factors that may increase the risk and these include:

  • The use of fertility drugs
  • The use of antidepressents during pregnancy
  • Not taking folic acid or prenatal vitamins during pregnancy
  • Gestational hypertension
  • Obese mothers
  • Toxins during pregnancy or early infancy
  • The use of Pitocin to induce labor
  • Pollution
  • Vaccines
  • Frequent infections or use of antibiotics in early childhood
  • Early childhood trauma
  • Genetics
As you can see it could be just about anything, a lot of these were just maybes and in the research phases, and they just increase the risk, some mothers have these symptoms during pregnancy but their children dont have autism while some mothers dont have any of these symptoms and their children have autism. So its still unknown what it could be. The vaccine controversy has been debunked by medical science and the doctor that first published a report saying it was the cause of autism has since lost his license. The MMR (mumps, measels and rubella) vaccine which some parents say caused their children’s autism has been proven to be safe, in my case I didnt give it to Bilal in fear of autism and chose to postpone it to after the age of 3 the autism risk years, but he was diagnosed with autism anyways and I went ahead and gave it to him. I’m still skeptical and worried and will postpone giving it to my other son, just in case.
How is it diagnosed?
You must know and be on the lookout for symptoms and early warning signs. These include limited or no eye contact, limited communication, speech delay, a strict adherence to routine, repetitive behavior, inability to correctly play with toys, toe walking, difficult behavior including outbursts and tantrums. One must also follow closely with a their child’s pediatrician and if any thing is suspected the child should see a developmental pediatrician or child psychologist. They will then observe the child and ask questions about his early development and when milestones were reached and mark it all in different scoring sheets.
How do you treat it?
As they still dont know the exact cause of autism they cant create a cure, there is no medicine, shot or surgery that will wipeout autism, but there are lots of treatments, and the earlier they are started the better the outcome. Some parents even say their child outgrew the symptoms and have lost the diagnosis, but those are rare, the child will always have something, some kind of behavior that fits the spectrum.
  • Therapy: there are so many therapy options availalbe, speech, occupational, physical, behavirol, music, art, water, horse back riding. The one or several you choose will have to be researched and seen if its the right fit for your child, is it covered by insurance, is it worth the time and cost. Its a difficult process choosing the best options. We have Bilal in Speech and Occupational therapy both at school and in private, for a total of 2 hours a week each.
  • Diets: Some parents swear that feeding their child certain diets eliminate a lot of symptoms of autism. The child usually has some kind of food allergy and eliminating that food from their diets improves their behavior, these diets are difficult to follow and usually expensive. The most common autism diet is the GFCF (Glueten free, casein free). We did a blood test and found that Bilal did not have any food allergies and therefore decided not to change his picky diet in anyway other than trying to improve it. Also the Marcus Autism Center doesnt support special diets as a treatment of autism.
  • Supplements: Some parents also swear that giving their child certain vitamins or supplements eliminate symptoms. Some use B vitamins or a mix of other vitamins and minerals. These supplements are beneficial when following a limited diet as eGFCF to ensure the child has a well balance diet.
  • Medication: some parents turn to medication to control their child’s outburts or difficult behavior.
This is just a brief and limited explanation of autism, I suggest you search online, local libraries, doctors and therapists for a more detailed understanding, the resources out there are numerous, but just be on the lookout for those who want to take advantage of a parent’s need to help their child in any way and make up claims of miracle cures. Sadly those are numerous as well. Be careful.
When you do get the diagnosis you will feel a mix of emotions, maybe relief to finally have answers to your child’s odd behaviors, fear, anger, sadness and all that is normal, it is okay to grieve for the child you wished you had, for the future you imagined he’d have. Doctors will suggest you find local support groups to attend, to get help and advice from other parents who’ve been there. Autism is not a death sentence, with therapy these children can grow up to live comfortable and full lives, With just 2-3 months of therapy since Bilal started receiving services we’ve already seen improvements. I’m optimistic for his future insha Allah.
Please check out these links:
All the best of luck.

Tag Cloud