Tuesday, April 28, 2009

The Journey with the Pediatric Team

So, here we are, June 2006, meeting with the Pediatric Team for the first time. William is 2 and a half. There's a room full of specialists... Occupational Therapist, Speech Therapist, Physiotherapist, Psychologist and a Social Worker. They all observe William playing around with toys and trying to communicate with them without being able to say one world clearly, etc. etc.

In the matter of one single hour, they are ready to tell us what they want to do with our son. Speech Therapy, Occupational Therapy and a Psychological Assessment (sp?).

They all agree in saying he has a development disability of "some sort" but they don't know what it is. They don't even think of transferring us to someone else for a better diagnostic. They just decide on 2 different therapies and "it should be okay". What???

So... since my husband and I don't know much about anything in the medical field, we just go with the prescription and go ahead with the 2 therapies. (In the meanwhile, the psychological assessment was never done!)

Well, well, well.... doesn't work! William doesn't want to participate, doesn't make any improvements, nothing. Still, we go on with the therapies, one hour once a week, with no results. My husband and I are just so sick and tired of everything and we're so sad to see William struggling and crying all the time at the therapies that we give up.

We thought that giving up was a huge mistake because we were letting our son down... but it turned out to be the best decision we ever made!!

More to come...

Sunday, April 26, 2009

Article : Doctors and Diagnosing Autism

When a doctor first suggests that your child has autism, your immediate reaction might be disbelief and the urge to seek a second, third, or even fourth opinion. Because autism is so different in every child, it is a tricky disorder to diagnose. However, there are a few key ways in which doctors can efficiently identify autism in children, and if your infant or toddler is showing any of these signs of autism, you should visit your pediatrician immediately to express your concerns.

Autism occurs at a young age, rather than being a disorder an older child might develop. It is usually detected before the age of three, and many times much earlier. The first signs or autism are usually delays or regression in speech communication. Another early sign is abnormal behavior in group play situations and other social situations. The first step to diagnosing autism is a thorough physical examination as well as a review of family history by a specialist. Although your regular pediatrician will be able to spot unusual behavior, you'll want your child to be examined by a professional who specializes in autism and other similar diseases to make sure your child is properly diagnosed.

The next step includes hearing tests. Since language and social skill delays could be due to inadequate auditory sensations. There are two types of auditory tests, one of which records the tones a child can hear and the other of which requires sedation and measures the brain response to certain tones. Of course, the first method is preferred, since it does not require any use of a sedative. After auditory testing, your doctor may encourage testing your child for Fragile X syndrome, which often times goes hand in hand with autism. Metabolism can also be evaluated. To do this, your doctor will need a blood or urine sample to analyze DNA.

An MRI or CAT scan can also be helpful in diagnosing autism. The important thing is to work with doctors you trust. Second opinions can be very helpful, but when your child has been diagnosed, stick with one doctor so that treatment is uniform and so that your child will get used to this person. Autism is difficult to diagnose and even more difficult to treat, so remember that you should begin to learn as much as possible about the disorder as soon as your doctor identifies it. If you have yet to speak with your doctor about abnormal behavior in your child, do so immediately. By detecting autism early, you give your child a better chance at becoming a high-functioning individual with much more opportunities in life.

Author unknown

Saturday, April 25, 2009

The late walking

Let's get back to the symptoms we didn't know about...

William only started walking at 21 months. There was nothing wrong with his feet, legs, hips or spine. Our family doctor just called him a "late walker" but asked us a few questions about William's learning. His speech was still just a baby's babbling, he still had frequent tantrums, he was picky with his food (when I say picky... I mean PICKY!).

William was also not responding to his name, at almost 2 years old. He would watch TV standing right in front of it and he would crank the volume as high as possible. All those things we told our family doctor worried him and he transferred us to a pediatrician specialized in Autism, ADD, ADHD, and the kind.

We were told it would take maybe up to 6 months to get an appointment but we were lucky to get called within less than 2 months. Dr. Michael Dickinson, here in New Brunswick Canada, is the one who started us with the whole process of finding out if there was anything wrong with William. So we started by meeting with the pediatric team, which was out of town but fortunately not that far.

Next post... The Journey With The Pediatric Team

for some useful information on Autism

Thursday, April 23, 2009

Article worth reading

Achieving Self-control with Autism

Self-discipline is a skill that most autistic children have trouble acquiring. This includes not only inappropriate outbursts, but also habits that can be potentially dangerous, such as being aggressive towards others or causing harm to themselves, such as banging their heads off walls. To prevent these and other behaviors, one technique parents and educators can use to control autistic tendencies is self-management. Giving the child power over him- or herself is often the key to keeping control over violent situations and may be a positive step towards learning other behaviors as well.

Self-management works because the child is no longer fully controlled by others. By teaching self-management during specific times of day, such as while the child is at school or therapy, the child will be more likely to continue to practicing self-control during all times of the day. The key is to implement a program in which he or she monitors his or her own behavior and activities. Begin with short amounts of time, and continue to monitor the child from a more passive standpoint. Every ten to fifteen minutes remind the child that he or she is in control and needs to monitor and be aware of good and bad behavior.

This monitoring is a form of self-evaluation. When a child is in control, he or she may think more closely about behavior in the past and present. Set clear goals with the child-for example, an afternoon with no aggression towards others or a day at school with no self-injury. Every fifteen minutes ask the child how he or she is doing. Is the goal being met? If the answer is no, perhaps the child is not ready for self-management, or perhaps the goals are too unattainable. You want to make sure that the goals are easy to reach at first, and then move the child towards more difficult goals in the future. When a child is successful at self-monitoring, he or she will have a more positive attitude towards the experience.

Of course, an important part of self-management is a rewards system. Have the child come up with his or her own reward, depending on interest. Reinforcement will make these good behavior goals more clearly marked in the child's mind, and by choosing and rewarding him- or herself, the child will feel completely in control of the self-management system. Choose simple rewards to start, such as smiley faces for every goal met and sad faces for every goal not met, and work up to a larger goal, such as a special activity or new toy when a certain amount of smiley faces has been attained.

These types of programs do not develop overnight, so it is important that you and the child have enough time to devote to a self-management experience. By reinforcing good behavior with rewards, as determined by the child instead of by an adult, he or she will be more likely to carry this on even when not participating in the program. If your autistic child is mature enough, this could be a good treatment program to try.

Author unknown

Wednesday, April 22, 2009

Next Symptom we should've seen as not normal...

First of all, I am very sorry for not writing for so long but it's not easy to update my blog when I am so busy with 2 kids and a full-time job. I will try and do better.

So, here's my update...

William was prone to panics and tantrums. As soon as he wanted something, he would just throw a big tantrum until we could finally guess (sometimes after over 20 minutes) what the poor guy wanted. The little guy was frustrated all the time and the crying and screaming forced me to get out of the house a few times to try to put myself back together and make sure I wouldn't do anything I wasn't supposed to (yell at him, hit him, etc.). I always managed not to do anything bad because I would just walk away and take a few deep breaths and come back to find him most of the time, in a better state.

We finally realized that the reason for acting that way was that William wasn't speaking yet. (He's still not speaking fluently at the age of 5 and a half). The panics and the tantrums were because he couldn't communicate in any other way. With a lot of thinking and talking with my husband and our family members, we decided to try something with William that would stop him from panicking all the time. It's a little something I call "the show me language". As soon as someone would "smell" a panic or a tantrum coming up, we would pick William up in our arms and ask him calmly "show me what you want" and we taught him to point out with his arm (he couldn't point with his finger... another symptom I'll talk about later) and we would just walk around the room and ask him several times "you want this?" "you wanna eat that?", etc. You know what? At the age of almost 6, we still use that method and it has calmed him down a whole lot.

Stay around for another update in a few days.

Saturday, September 20, 2008

The Lactose Intolerance that mislead us...

Ok, now we know William is lactose intolerant, no cheese, no milk, no pudding, even nothing with pure white flour in it. It was hard at first, especially when we would eat out at some friends' or family members'. We always had to make sure what was offered to him would not make him sick. Our family and friends came to know what was allowed for him and what wasn't.

As soon as we got the news of the lactose intolerance, we changed William's diet. Soy milk, tofu cheese, pudding was changed for jell-o, ice cream was changed to rice ice cream, drinkable yogourts were changed for soy based milkshakes, and so forth.... But something was wrong.... very wrong.... William was PICKY!! God, was he BAD!! At first his dad and I thought it was from always being sick from lactose intolerance not long after he had eaten and he was being careful in his food choices even if we thought he was young to think that way (he must have been about 13 months old). But it was a completely different reason.

He wouldn't try new stuff, there was no veggies, no fruits, etc. Only juices, cans of alphaghetti, home made spaghetti, chicken bouillon, sheppard's pie, granola bars and slices of bread with anything he could find that would spread on it nicely (peanut butter, jelly, nutella, caramel, etc.)

Everytime his dad or myself would get him to try something new, he would gag or just literally throw up from the texture on his tongue. We got discouraged after a while and just let him eat whatever he would ask for, as long as it was healthy enough considering he didn't like much stuff.

Some other things he was picky about:
- we could not brush his teeth, he would gag from the touch of the brush on his tongue and from the texture or taste of the toothpaste
- my mother and myself would have (and still do) a hard time making him stay still for a haircut. He cries and panics
- I have to wait until he's asleep so I can clean his ears, otherwise, he panics
- my husband and I have to hold him very very tightly so I can clean his nose when needed, otherwise, he panics
- he gags very badly whenever his hands are dirty or even only has a hair in between his fingers when he's taking his bath
- I could go on like this for a while...

..... you probably guessed now what William's first symptom of autism was that we didn't learn about until 3 years later?!?! HYPERSENSITIVITY


I was surfing on the net for some information on autism and I found a very interesting Guide. Here's what it said... "Finally, You Too can join others who have discovered simple methods to effectively spot the 31 signs of AUTISM & Learnt Information proven to help maximize the potential of someone with autism - Guaranteed"


Click Here! to find out.

Sunday, August 31, 2008

William's Health as a NewBorn

William was a very happy baby until he reached 2 months. He was hospitalized for abdomen pain, constipation, frequent reflux, low weight and constant crying. Doctors had a scan done for his abdomen/intestines and it came clear. Blood, urine and stool tests came back normal as well. We were sent home.

Five months, dozens of visits to our family doctor and seven(7) different milk brands later, a new doctor found out our little William was
lactose intolerant. WOOHOO, we had a diagnostic and we could do something about it. He was put on Prosobee (soy formula) and he no longer had a hard time with his digestion. (You'll understand later why I talk about this... it leads us to a first symptom of autism which we did not know anything about)

William's Birth

I was 8 days past my due date, resulting in an attempt to force the birth with a medication called "syntosinon" (it's in French, I don't know the English equivalent, sorry. I believe it might be something similar to Petocin). Twenty minutes after the start of the IV, William's heart dropped from 155 beats per minute to an astonishing 64bpm in a matter of about 3 seconds. We had to deliver through c-section right away. I was brought to the O.R. and put to sleep immediately. Once I was asleep, it took my ob/gyn 2 minutes to sterilize, cut open and take my poor William out. (I was put to sleep at 11:29am and William was born at 11:31am!) He was white in color and was given oxygen for 12 hours "just in case" they said. (I still wonder if it was "just in case"). He was born with a pneumonia and was in NICU for 7 days on antibiotics and was wired for his oxygen level (under the foot), lungs function and heart rate. My husband and could only hold him the following day.

Taking you a few years back

Aug 31st, 2008

I intend on taking you back a few years to explain how it all began. If you are struggling with similar problems with your kid, maybe this can help understand what's wrong. I am NOT A DOCTOR, I am only a mom with an autistic child and would LOVE to help other parents out. I'm not saying that if your child has the same symptoms William had when he was a baby, that your child IS indeed autistic, I am just saying that it might help you pinpoint some things that you might not think are not typical for a child that age. I had to seek help myself and if I had know then what I know now, I would've gotten help for William much earlier...