Our journey through autism

Archive for the ‘research’ Category

Sensory Learning Program

Sensory Learning Program is another part of Bilal’s intensive summer therapies. SLP is really quite complicated to explain and sometimes seems like I’m talking science fiction, and whether it works and makes a difference is difficult to tell. I’ll try my best to explain it:

To learn anything new you acquire information mainly through, sight (vision), sound (auditory) and motion (vestibular) of course there are the other senses that you gain information from, but from a sensory point of view those are the 3 systems. The 3 systems have to be in sync, working together at the same time and the same intensity to truly learn. If one of them is weaker you miss important information, and if one of them is too strong you focus more on that information instead of gaining a complete picture. SLP aims to reset the 3 systems and train them to work together at the same strength, and it does this by using lights, sounds and motion, with the use of a sensory table.

Before therapy begins, the individual is given a brain scan to draw a map of brain electrical pulses. Print outs of reds, greens and blue, showing which areas of the brain are the most active and which are the least active. Talk about alpha, beta, delta waves, etc. The technician who ran the test is what you could only call a brain geek, she was fascinated with the results and went on and on talking about all the different waves and strengths, it was way above my head. Something I picked up was the reason for Bilal’s constant movement (vestibular) he has to constantly stay in motion (fidgeting, walking around) to awaken his brain to think and learn, if he pauses his brain falls asleep. This is what happens with ADHD. From those results they were able to understand how Bilal’s brain worked and could come up with a plan for treatment. They would choose certain light and sound frequencies to expose Bilal to that would activate the weak spots on his brain. Another test they run before treatment, is a “listening profile” they have Bilal listen to certain beeps or sounds at different frequencies to again determine his weaknesses and strengths and expose him to the right sounds during treatment. In short this therapy is like resetting the brain where its all balanced and able to use information efficiently and improve learning.

Therapy is divided into 2 parts, in office and at home. The in office part lasts for 18 days. For 18 days Bilal had to go to the clinic, half an hour in the morning and half an hour in the late afternoon to lay on the sensory table, look at a light and listen to sounds through headphones. The table is like a big bed that slowly turns, up and around downwards and up again, very slowly to trigger the vestibular system. There is a light box above his head that displays different colors (ruby-red, magenta, yellow-green, green-blue, etc) each color has a different frequency that activates his visual system. Finally he listens to different sounds played at different frequencies through large over ear headphones, to strengthen his auditory system.Each person reacts differently to this therapy depending on their starting point, but in general each color or frequency triggers a certain emotion or part of the brain. Examples:

  • the color magenta which helps regulate emotional senses and relaxes the visual system
  • the red and ruby color which stimulate the cerebellum which is responsible for the integration of auditory and movement information. This color also addresses visual processing, promoting convergence and eye teaming to look at a single object
  • the color yellow-green which address motor planning and expressive verbal communication

Some of them are almost instantly, the day of the yellow-green exposure Bilal was telling stories, re-telling a cartoon episode he saw in detail. Other times emotions would show up by the end of the day. It’s really interesting to say the least.

In the middle of the 18 days, another “listening profile” is done to see improvements and to determine other frequencies to play for the second week.

The second part of the therapy like I said is an at home program. For 12 days (total of 30) twice a day, 20 minutes in the morning and 20 before bed, Bilal goes sits in a darkened room or closet and looks at a light box that emits a steady phasing in and out magenta light. This part of the therapy had less side effects or emotional outbursts.

Like I said this therapy is like a reset of the brain, some children its like a switch was turned on and improvements are instant, but for the majority improvements happen over time, small changes with behavior, attitude, learning over several months. It takes time for the brain to re-wire and organize itself to learn more efficiently with past information and with new information.

Before we did this therapy I chatted with someone on a forum and she said she didn’t see any improvements with her son, but still felt it worthwhile, this therapy was not covered by insurance, a $3000 out of pocket expense, also the time required for twice daily clinic visits and twice daily quite time at home is exhausting for both you and your child. Did we benefit? Its hard to say for sure, at the same time he was doing IM, that had a benefit, did the SLP help with it? don’t know… He has had improvements with attitude, anger or frustration is diffused faster, he’s a little calmer, bed wetting is no longer every single night, its every 4 or 5 nights now. Next month we’re due for a post-SLP brain scan, to see any differences or improvements. I would say it was worth it, we don’t regret it, and you should look into it too.

http://www.sensorylearning.com/program.php

https://www.youtube.com/results?search_query=sensory+learning+program

Going Green

This isn’t really directly related to autism or to Bilal’s journey but its something that might make a difference in our lives so thought of sharing. A lot of you may have already gone green, organic and all natural once you got the diagnosis. There are countless articles and research that suggests that environmental factors may cause or increase the risk for autism. The most exposed to toxin may be household cleaning products. The chemicals used in store bought products are harsh and expensive, so eliminating  those whether your child has autism or not is a good idea for you and the environment, more importantly during pregnancy and infancy, where the developing baby is most at risk.

 

Green products

Going green is easy and so much cheaper, most probably you already have all the ingredients you need right in your house or a quick trip to your local supermarket is all that is required. Most common ingredients are:

  • vinegar
  • lemons
  • baking soda
  • hydrogen peroxide
  • rubbing alcohol
  • cream of tartar
  • essential oils (mint, lemon, lavendar, etc…)
  • Dawn dish-washing soap (not natural but not harsh and adds major cleaning power to the above)
  • Borax

You’ll also need spray bottles, rags, towels, sponges or cleaning brushes.

 

The only cons I can say with going green is that it takes a bit more time, you have to mix and prepare the mixes before each time you clean so as to be most effective and the cleaner will have to sit or soak for a bit as well. But really its minor and the pros are way more important.

You’ll find countless recipes online, Pinterest and Google are your friends. Mixing those stuff together really do the job and its all natural, cheap and isn’t harsh smelling or dangerous. I clean my bathroom and kitchen with these mixes and they really shine, no soap scum or grease or residue with these.  Some people do their laundry and dish-washing with their own DIY cleaners. People have also made their own paper towels and wipes, so even less waste…  So look into it for your safety, your children and that of the environment.

 

My favorite website is One Good Thing by Jillee found through Pinterest, she’s all into DIY cleaning products and organization tips.

 

Myofunctional Therapy

Myofunctional therapy is basically therapy of the facial and oral muscles, (tongue, lips, mouth, jaw, cheeks, etc…) A couple weeks ago Bilal’s OT therapist was traveling abroad and the owner of the facility took over for 4 sessions, she wasnt used to his speech patterns and asked whether he was getting any speech therapy and she suggested that I get him evaluated by her friend and colleague for this myofunctional therapy. We set an appointment, for the beginning of the month but he woke up with a slight fever that day so we rescheduled for the 15th of May. We go in and Dr. Sharon Wexler starts her evaluation, she checks his stance, posture and neck alignment, she explains to me with a mouth and tongue model what a normal swallow should look like and what a lot of children with autism look like. She says infants have a thrust swallow, as they nurse and deal only with liquids they move their tongues inwards and outwards as they swallow as they mature and start taking in solids they swallow by moving their tongues upwards and backwards. As with many of Bilal’s fine motor delays his tongue thrust never developed properly,  also while your mouth is shut and relaxed the tongue usually rests and touches the roof of your mouth but for Bilal its at the bottom, when asked to swallow with your teeth set closed your tongue goes up but for Bilal he had to push it out. She had him bite and chew an animal cracker, he bites with his side teeth and takes a lot of small bites, and swallows it as it is. A normal person will usually bite with his front teeth, chew, move the food around his mouth with his tongue and gather it towards the back and swallow, all this is done unconsciously and involuntary but that’s how it is done. She also had him chase a lollipop around with his tongue sticking out and it took him some effort to stick his tongue out at the correct side, he’s also unable to lift his tongue for the “LLL” position. His tongue weakness explains why he takes a lot of small continuous bites of food so that the new food will push the other food down as he cant manage to swallow it correctly, that’s why he overstuffed his mouth as well. She then measured the strength of his tongue and found it to be weak, and then finally she had him identify some pictures to see how he pronounced those words, he misses a lot of letters but not always indicating a weakness. The good news is that his mouth and lips are fine, no drooling or other issues. She says he’s at the perfect age for this therapy as he’s old enough to understand and follow directions, and to learn to be conscious of his swallow and learn the proper method of doing it. She says speech therapy is great and all, for vocabulary and grammar development but for pronunciation its all wrong trying to build on weak foundations, it will never build up correctly. She does half hour sessions with him once a week while we practice at home the rest of the week. Her testimonials say that parents noticed results within 6 months. It was a very interesting and beneficial evaluation explained a lot of his eating habits, why he only eats these particular foods because its what he can manage, chew and swallow on his own, he doesnt take any hard foods which are apples with the peel or meats, everything he eats either breaks down or melts easily and gets pushed back almost on its own, its also why he chews with his mouth open and why he’s a messy eater. She’s still in the research process of the relationship between reflux and tongue weakness, but it makes sense, she says that with this method of swallowing an air pocket gathers and when he burps it pushes up all the food again, Bilal had reflux until he was 18 months. I’m looking forward to this therapy and the results we’ll get, better prouounciation leading to better communication and better eating habits and hopefully a more varied diet.

The only drawback is that The Institute of Myofunctional Studies does not file insurance claims, I have to send in the receipts and wait for them to refund me, so its expensive and time consuming and there is the risk of the insurance company delaying refunds and making up stories of not receiving it, getting lost in the mail and so on, but its worth it inshaAllah.

Extra brain cells may be key to autism

With this latest study they say that an increase in brain cells in the prefrontal cortex which is responsible for social, emotion and communication functions which develops during the second trimester may be behind the cause of autism, they also say they finally have something solid to build on but the study was done on a very limited scale.

Personally the size of Bilal’s head was never questioned by any of the doctors he’s seen and I dont think it is an issue for him, maybe cause his autism is mild the increase of brain cells are limited too. The second trimester for me is when things went bad, the high blood pressure, the water retention and the ear infection, those could have been triggers to cause the brain cells to increase…

Here you can find an article to read for yourself.

http://old.news.yahoo.com/s/nm/20111108/hl_nm/us_autism_brain

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/

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.

Pitocin, autism link…

I came across this article from Twitter today.

This part of the article especially makes sense to me:

“In spontaneous labors the mother’s pituitary gland makes an endogenous (i.e. internal) oxytocin that triggers the physiological onset and progress of labor. The hormone oxytocin is also produced during breastfeeding (causing the let-down of breast milk) and it accompanies sexual orgasm. For this reason it is referred to as the “love hormone” by obstetrician Christianne Northrop, MD as each of these biological events are associated with experiences of great emotional bonding and include meaningful social interaction between the individuals involved. Since autistic disorders produce an inability to make or maintain affectionate bonds or have normal social relationships, one cannot help but wonder if perhaps there is an causal relationship between these disorders and exogenous sources of an artificial form of oxytocin. Perhaps flooding the immature body of the fetus (especially boy babies) with this gender-specific synthetic hormone from animals somehow interferes with the eventual function of these psychological systems. It is an intriguing question.”

I was given Pitocin to induce labor the day I was 37 weeks gestation, my OB saw with the growth restriction it would be safer for the baby outside the womb, they checked me the day before I gave birth and found I was already 3 cm dilated, the night before I had reached 5 cm. I think I would have gone into labor naturally within a day or two maximum and wouldn’t have required to be induced. Allaho a3lam, cant go back in time, but if Pitocin is the cause of my son’s autism then I’m really pissed off at my OB and pharmaceutical companies.

Have you been induced and have a child with autism? If so please fill out this open discussion.

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