Our journey through autism

Archive for October, 2011

Wandering

Wandering and getting lost is a fear any parent has, whether with autism or typically developing. The worst pains a parent can go through is to have their child missing not knowing whether they’re safe, dead or alive. May God protect our children from any harm.

Wandering is a common threat to autistic children. The children dont know that they’re doing it, they’re in their own little world and get easily distracted, they may follow something they find interesting unaware of their surroundings and where their family has gone. The child being non-verbal or with limited speech is at even more danger, unable to tell a trusting adult any useful information. Some parents will label their child’s clothing or acquire one of these. There are several stories in the news of children going missing or wandering off, and the ending of those stories have gone both ways.

Alhamdullah I dont have that problem with Bilal but it is still something I worry about and whenever we go out we keep a very close eye on him, reminding him constantly to stay close by and we’re thankful that he’s recently learned his full name and age, I know at this age he should know his address, phone number, parent’s names and phone numbers but we’re taking it one day at a time and making sure he’s always safe. I have 1 wandering story for Bilal that took place the day before his second birthday. This is copy and pasted from a journal I keep that I wrote soon after the event.

“We were in Saudi Arabia at the time and lived in an apartment building, you’d have to go up a flight of stairs to reach our apartment. So I was in the bathroom emptying the washing machine preparing to hang the clothes up to dry, hubby was outside at his desk working on some accounts. The doorbell rings incessantly and I can hear my 2 year old crying pretty badly, thinking that maybe the sound of the doorbell surprised him as it did me, we weren’t expecting anyone at all, he’s usually so excited when it rings, I let my hubby answer the door, a bit later he comes to me carrying our son saying the guy downstairs just brought him, he was out in the street. Oh my! I was shocked but my typical self doesnt react at the occurence of an event, usually afterward I might break down and cry, let it all out …. I could see that he was unhurt and all I said at the time was “the cat must have followed him outside too” so my hubby goes and finds the cat outside hiding under the stairs.

Later that day as I was preparing dinner I let it all out and cried some imagining all the stuff that could have happened but thankfully hadn’t… if he was really in the street like the guy that works in one of the shops downstairs says then he could have easily been hit by a car, he could have easily been taken by someone, and as he went out barefoot he could have stepped onto something sharp and hurt himself. I imagined myself talking to police telling them what he was wearing and showing them recent pictures. He also had a poopy diaper and was in a onsie, totally appears like neglectful parents, we arent, always have an eye on him but for some reason neither one of us heard the front door opening. I felt horrible, and kept thanking God that nothing happened and that he’s safe and sound. I think it was a wake up call to be more careful and thankful and not take anything for granted. After I changed him and washed his feet, hubby took him to the door and very sternly told him to not open it again and that it was a big NO NO. The whole event kinda scared him, even before we reprimanded him, he was crying and seemed shook up, he’s not really used to strangers, so i’m sure the guy that brought him up scared him as well.

The cat that I mentioned isn’t even ours, we were kitty sitting for a friend of hubby’s while he goes on vacation. So the cat could have been hurt or taken as well, also to make matters worse is that the cat is in heat and meowing so loudly for a tomcat that she could have been impregnated by a stray, but thankfully that didn’t happen either.

What I think happened was that my son was playing with the door and it opened and the cat ran out, or the cat being in heat was hanging around the front door maybe even reaching out for the handle, so Bilal may have opened the door for her, so he ran out to follow her, when the guy downstairs saw him, the cat ran and hid under the stairs. I don’t think he would go out barefoot and on his own down a flight of stairs and outside of the building like that. He knows that he needs to get dressed to go out and he wouldnt go so far alone, but you never know really. So we installed a chain to the door and keeping it shut at all times and praying that nothing like this ever happens again God willing.”

I don’t think I need to remind parents to look after their children and keep a close eye on them, especially if your child is on the spectrum they need even more attention.

 

Please read this for more information: http://www.sciencedaily.com/releases/2011/04/110420143702.htm

Where we are in our journey

Bilal is now 4 years and 1 month old. Since he turned 3 he has progressed a lot. When he first turned 3 there was still some regression, his baby brother was born, starting daycare, and lots of traveling all that would be difficult on a typical child more so one with autism, he’s come so far from “eh eh eh” with pulling and pushing to several full sentences, to refusing to feed himself to doing quiet well with spoon and fork. He has mastered the use of the computer, by typing his name to login and opening Internet Explorer and visiting his websites. Disney Junior, PBS, and Starfall playing videos, or games I think he’s even found a couple more websites he enjoys visiting. He knows his numbers from 1-20, he recognizes the letters of the alphabet in both capital and small, he enjoys looking at story books now, learning to write, he does a really good capital J. His teacher says he is communicating and playing well with his classmates and calls a couple of them as his friends, he’s making progress on all his IEP goals and I guess most comforting to me is his behavior has improved a lot, we seldom have out blown tantrums or meltdowns, rarely have any more head banging or screaming, I cant remember when I last saw him toe walk. He loves his little brother, lots of “big hugs” during the day, they laugh and play together and often times Bilal would help out when Sulayman starts crying asking for his bottle and giving it to him. Alhamdullah its been a good year and I’m optimistic and looking forward to more progress insha Allah. We still have a long journey ahead of us.

 

I am unsure what I want to write down exactly, The difficult part I believe is behind us and we will continue forward with more therapy, with school, IEP’s, and whatever sound treatments come up in the future. I still dont know what else I want to do with this blog, I’ll still write about therapy sessions, I want to write about Bilal’s little brother, I want to share articles I read online, new findings or studies on autism that seem to appear almost everyday now but with still no clear underlying cause or cure. I want to mention therapy centers we visit, the therapists, and doctors we’ve spoken to, to help in a more local way. I still dream of bringing awareness to the Muslim community, I wish to make a close true friend who’s been there and possibly our boys could also become friends. I would like suggestions and ideas from any readers of the blog, I really want to make this blog worthwhile for me and for anyone visiting. I hope I can achieve all that and I hope you’ll stick around for more and to help out as well. Thank you.

Autistic Facial Features

According to new research they say children with autism have distinct facial features, that is if you know what you’re looking for. It is not as distinct as a feature as those with Down Syndrome.

“The study found children with autism had wider eyes, and a “broader upper face,” compared with typically developing children. According to the study, children with autism also had a shorter middle region of the face – including the nose and cheeks – as well as a wider mouth and philtrum, the divot above the lip and below the nose.

The study also found that children with more severe autism traits such as behavioral problems, language difficulties, and repetitive behaviors had distinct facial differences from other children with milder autism.”

 

I dont really understand what that means, Bilal looks like a mini-me and we dont have wide eyes, and I dont understand all the rest of it, short middle region, as in small nose and cheeks? Bilal has mild autism so he may have mild features…

They say recognizing when these features become obvious may indicate whether autism is genetic or environmental and may even make diagnosing easier.

My personal belief as they keep saying each child with autism is different then they are also different in appearance. I’m not sure this applies to Bilal’s case.

 

To read the news article you can check out: http://www.cbsnews.com/8301-504763_162-20123858-10391704/children-with-autism-have-distinct-facial-features-study/

Feeding Therapy

I apologize for not updating recently, just been busy with house stuff and also I’ve picked up some books from the library and when I start reading a good book I dont want to do anything else. Writing out this post here before I forgot the details of the visit.

I finally got Bilal an appointment for a feeding therapy evaluation, first sent the paperwork to Marcus and they transferred it to Children’s Healthcare of Atlanta, the same rehab center we go to for speech therapy. I was told to bring in a fruit cup, beef jerky, string cheese, vegetable chips, juice and milk, to make sure there were items he liked and items he didnt. I had no idea what the evaluation would entail really, and what a feeding program was. Bilal since he turned 3 has become a picky eater, he suddenly dropped certain foods and will no longer eat them and we’re down to a list of only 10 accepted foods, if I tried offereing him anything else he would either ignore it or spit or gag on it, not wanting to deal with vomit I just go with what he wants and not push it, I decided to leave that to a professional to deal with. I was told that he shouldnt eat too soon before the evaluation as he was required to eat in front of her, so he only got breakfast and snack at school, no lunch.

We get there and are introduced to the occupational therapist, we go over Bilal’s eating history, reflux, when he dropped foods, eating habits and what he eats. She discussed seating arrangements and says using a booster or a special chair  that provided sensory input for him to push his feet against, this was important so that he wouldnt move around too much while seated which is an issue at home and he can concentrate better on his meal. She explained that eating uses all the senses and for a child with autism that can be too much to handle, she suggested we use the sensory brush or bounce mat before meals. To blow bubbles, whistles, balloons for oral exercise, wash hands and sit down to eat. I am to place 3 food items on his plate 1 from each food group, with at least 1 of them a preferred food, and he has to show any kind of interaction with the non preferred ones, look at it, touch it, smell it, put against his lips, teeth or place it in his mouth, I should model for him and give him a lot of praise and positive reinforcement, meals should last no more than half an hour, and whatever he wouldn’t eat he can than “kiss bye bye” before throwing into another plate or the garbage, the idea being that he touches it with his lips, or he can put in into his mouth and spit it out in “shooting rockets” form again being he tasted the food. I should also change my language from “Can you eat this?” to “You can eat this” no questions or begging just stating it as a matter of fact that this is what we will eat. With time and practice and patience he will become less sensitive to new food, flavors, textures and will learn to eat a variety of food. She watched him eat a Mozzarella cheese stick and noted that he had some minor oral motor weakness, because he chewed with his mouth open and didn’t push the food around with his tongue just let it roll around under his teeth. So I was to follow this home program and see her once every other week with new tips and suggestions and guidelines to follow. She said I should continue only offereing a drink (juices like V8 Fusion or Fruitables) after he completes his meal, and use a lot of sneaky chef ideas by hiding pureed vegetables in foods he already eats.

I understand and agree with everything she says but some of it is a lot of work, change of habits, more cooking (I hate cooking) and I’m also teaching the baby to eat as well and going around his teething problems and bottle attachment issues and its just easier offering Bilal what he would eat with no special tactics and getting it over and done with, but it is therapy and I’ll find a way to stick to it, just as I am sticking to his schedules, taking him to therapy and discussing with his teacher and therapists ways to fight his autism whether that be social, speech, fine motor or oral motor delays.

US autism journey

Before we had left the US for Saudi I was unable to get insurance or an evaluation for my son, my pediatrician said I could get him evaluated for free by the public school system and that I should add my name to the Marcus Autism Center’s waiting list, maybe by the time it was our turn we would have insurance. So I did that.

I call Marcus and they email me a medical history form to fill out and email back, they add me on the list and say it’s anywhere between 6-12 months. I call the elementary school and they mail me a packet of questionnaires to fill out and mail back, which I did the day before we traveled. This was all at the beginning of Nov 2010.

We come back to the US at the start of April and I get busy with phone calls, I call Marcus and ask what the status of my son’s placement on the list is and they tell me to come in for an initial evaluation by the head nurse for the beginning of May. I call the school and they said they were currently on spring break, so after spring break they schedule him for a hearing test for mid April and an evaluation for the beginning of May. He passed the hearing test, and both evaluations at Marcus and the school were filling out forms, answering questions and observing Bilal while he put puzzles together, or colored, he was asked to throw and kick a ball, to answer questions, follow a story book and the like. Marcus scheduled me for a psychological evaluation for the beginning of August and the school said we would have our first IEP meeting at the end of May. I had never heard the term IEP (individualized educational plan) which has the goals and objectives of my son’s progress according to his current level, what he should be able to master by the end of the semester or year. I learnt later that the IEP is a legal document, where parents may bring an educational advocate or lawyer to attend the meetings, where I can sue the school if I find they were not meeting my child’s needs adequately and that it is a BIG deal. Not knowing all that I attend the meeting bringing Bilal along, where he got bored and started acting up and kinda rushed the whole process, signing where they told me to sign and walking out the door before an hour has passed.  Thankfully I’m dealing with a good, honest and conscious team, they do want to help Bilal improve and reach his full potential, and they did address all his issues and write out a good plan for his IEP.  In June he was scheduled for an OT evaluation where I had to fill out yet another long questionnaire and Bilal was observed holding a pencil, writing, using scissors, building with blocks, doing puzzles, stringing beads and his preferred sitting position and the like, a week later had another IEP meeting this time without bringing Bilal and they just included his OT goals into it. The OT therapist asked me whether I’ve had him tested and have an official diagnosis or not, I told her I was on the waiting list at Marcus and just waiting she told me I should see a developmental pediatrician as they are better trained in diagnosing developmental delays and she suggested a doctor that had a short waiting list. I set up an appointment with her for the next month, a series of 3 appointments.

At the developmental pediatrician its much of the same, filling out forms, going over medical history from pregnancy until today, milestones reached, observing him as he played and did a quick medical check-up of weight, height, head circumference and muscle tone, etc… The second appointment was more like a child IQ test, having Bilal identify pictures, play with toys, copy patterns, building blocks, writing and a repetition mainly of his other visits with Marcus and the school. At this point Bilal had so gotten used to the process he had no trouble separating from us and playing along and following directions. The third appointment was at the beginning of August and it was the results and diagnosis. Even though I was told before that Bilal had mild autism and even though I read several books from the library about autism and could clearly see he had all the signs, having the developmental pediatrician tell me that it was in fact mild autism came as a shock, I was hoping it was anything else, holding on to that chance. She goes on to explain the CARSII (Childhood Autism Rating Scale, second edition) testing  scores, and she gives me pamphlets about autism, the Georgia chapter, flyers from feeding programs, social skill groups, a list of therapists, ABA (applied behavior analysis) therapists, FloorTime, nutritionists, the Toys R Us differently abled toy guide. She suggested doing ABA and maybe following a diet or going on supplements,  and I walk out devastated and overwhelmed, what do I do? who do I choose? she was so serious and made it feel like that’s it, he has autism and you should do all these therapies and live with it. I was lost, and I do the only thing I can do, start making phone calls, I take her doctor’s order for speech and OT therapy to the Children’s Healthcare of Atlanta, I get the blood testing done for Fragile X syndrome and food allergens, he was negative for both alhamdullah, and just read more about autism and all these different therapies both online and from books at the local library.

11 days later I have the results and diagnosis from the psychological evaluation at Marcus Center. According to the testing scale they used he would be diagnosed with high functioning autism and she first started by stating all of Bilal’s strong points and how well he was doing in certain areas and then she went on to explain his weak points, which were mainly social skills and fine motor weakness, he also has speech delay problems but not as low on the scale as his social and fine motor skills. She also suggested a list of therapists, and FloorTime. She said that she didnt think ABA would be beneficial for Bilal’s level and that FloorTime, speech and OT were adequate, she also suggested looking into a feeding program and doing something for fun like Karate, social skill  play groups, scouting, etc. I told her that with this meeting I feel more optimistic than after the developmental pediatrician’s visit, she said that maybe I’ve had time to understand and digest it all, could be, but her method of breaking the news and her suggested therapies made more sense. The Marcus center doesn’t support special diets or supplements as a treatment for autism which made it easier for me to deal with, crossing out something from the looong list of therapies suggested. She told me to apply to the Katie Beckett Deeming waiver and call her at any time for anything. I leave her office feeling pretty optimistic, we were finally done with the whole evaluation process (From Nov 2010 – August 2011), we had 2 similar opinions from 2 different areas of expertise, he was registered for school and we had our speech and OT scheduled and we could start prepared on this long journey ahead of us.

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.

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