Well we have a dignosis, Autism

Rachael - posted on 04/27/2010 ( 5 moms have responded )

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well after battles and struggles we have a dignosis for our son,
James IS autistic. He had a 3Di or something done and he scored 20+ on all 3 aspects one was higer than 30! this apparently indicates asd at the severe end of the scale, So we begin another journey, one i expect to be full of events, struggles, but much love,
James is 3 yrs old has no speech currently, nor has he ever spoken a word. he has some sensory difficulties and severe learning disabilities. despite all his behavoural problems he is a very loving boy under all that frustration
i would love to hear from others, maybe you have some small piece of advice that can help. somtimes the tiny things really make a difference.

He has been given a place at a special pre-school, and there he will learn PECS and maybe MAKATON

ive heard changing diet can help reduce some autistic features and make life easier for the child, i would be vvery interested in hearing your experiances/advice re diet change, ie wheat diary and gluten free diets and whether anyone has found such a diet change usefull.

Thank you
Rachael

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Sheila - posted on 04/27/2010

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We spoke with our pediatrician about dietary changes. Her response was that there was no conclusive evidence. If there were digestion issues, it was her belief (and I agree) that a child will behave and learn better if their tummy is not bothering them....

So, I believe that people who see an improvement in their child's behaviour/communication etc are seeing children who feel better AND I am all for that! I think that is why some people who try the dietary change and see no change in their child ....well, I think it is because their might not have been a correction to their digestive system.

I also, after doing some reading, got rid of my aluminum based cookware and turned to stoneware. ASD or not, studies link aluminum to Alzheimers.....I am all about staying neurologically healthy...so away it went.

There are studies that show Omega 3 has benefits to our neurological health...but, most foods with Omega 3 additives don't come anywhere what you need to make a difference...so, you need to take it in liquid or pill form....NOT going to happen with my little fella and his overly active gag reflex!

Not a small piece of advice, rather lengthy, but if it helps to unlock your child's verbal skills it will be worth the read. By no means is this a guarantee, but since it worked for one, it might work for James.

Some at home Early Intervention Techniques

This is the method that a friend used for her completely non-verbal child. It takes a huge amount of time, so be patient. It can also be very frustrating and heart-breaking....but you need to give this a year..not four weeks, not three months...it is at least a one year commitment once you start.

Set up a little table. This is your work space. Not the kitchen table, but someplace where when you go your little one will know that you are there to "work."

He sits on one side, you the other.
I am using bubbles as the motivator because this is what motivated my friend's son.

Have a picture card of the bubbles.
Do you want mommy to blow bubbles? (wait for a nod, and if he doesn't nod, gently nod his head (finger to chin) as you nod his face, nod your own.
Yes, mommy and Stevie love bubbles....
now blow.
Do this four or five times in a row.
Now, do this until he finally nods for you.
Once he begins nodding, wait a week or so before moving on to next step, but keep blowing bubbles every day and having him nod.
STEP 2
Get a picture of the bubbles.
Do you want mommy to blow bubbles?
(should nod)
Give mommy the bubble picture
(guide his hand over the picture in order to give it to you)
Oh, you want the bubbles, ME TOO!
Blow....do this four or five times.
Repeat this every day until he finally gives you the picture then solidify this step for a week or so

STEP #
Do you want bubbles,
he should nod and give picture
Say bubbles....(but you can wait for the B sound, that is good enough!)
model making the B sound, see how my lips make the b sound, gently place his fingers on your lips
This step might take AGES, it might even be too much and you then need to go back to step two and work on identifying other pictures (eg...do you want your drink, nods and gives picture)

But, let's be optimistic and he finally says B sound....
blow bubbles and

Step FOUR

Do you want bubbles,
nods, gives pictures and says B
Your job now is to get him to stretch out the entire word...it might be REALLY challenging, it might be very chaotic, and his temper might fly...YOU CANNOT REACT to TEMPER...you are the anchor in the storm that keeps him with you...his soft place to fall. He screams, yells, flips the table...no matter
right the table, have a new jar of bubbles,
You want the bubbles?
Say bub- bub
You are building a path through autism...you are basically attempting to rewire so that the message that is stuck in his brain is able to make it's way into and out of his mouth

Once he says Bubbles...move on! Pick other motivators (penny candy, crayons, magnets, stickers, WHATEVER HE WANTS!!)

Add words...(avoid pronouns in the beginning)
Billy wants bubbles...(if you can, learn the signs for these words so that he is getting an auditory and visual message)

EYE CONTACT
-get a headband
-put a velcro stickie on it
-get a favourite object, or picture and velcro it to the headband
-on the floor, at his level,
Can Billy get the puppy?
he plucks the puppy off the headband you are wearing
-Billy where's the puppy...get him to look at the puppy, in your "face direction"
is is a non-threatening way to get a visual connection going with your child

Directions
-use the phrase First/then
eg First we leave the house/then go in the car (do NOT jump ahead to mommy has to go grocery shopping, and then we have to see the doctor...blah blah)
-break the day down, or instruction down to TWO steps...be as concrete as possible
-this helps him to make sense of his day
-first i get your coat/then we get your shoes....NOT it's time to get dressed, let's get your red shirt and jeans, because it's really cold...KEEP IT STRAIGHT FORWARD
First/then language is so important because a child on the spectrum is easily overwhelmed by too much information.

Inundate with language....tape the word fridge on the fridge, cup on his cup...become as language rich in your home environment as you can (think of a Kindergarten class with words pasted on different objects)

Be explicit in your teaching...James, get my your book (then lead him to the book, and hand over hand have him give it to you) Children on the spectrum need EVERYTHING broken down when it is severe....

Be generous and sincere in your praise...CELEBRATE every accomplishment because each one is HUGE...

Be kind to yourself and be strong....but no when you need to have a break and be strong enough to ask for help.

Good luck,

Sheila

Kellee - posted on 04/27/2010

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Rachael, I have no experience in diet modification for my ASD child. I can say that the preschool my son went to as geared for ASD children to mainstream. PECS is wonderful as well, when my son goes non verbal (he is 8 now and it still happens) it helps him to communicate his frustration. Look on Amazon.com for a c.d. called Pics for PECS so you can make your own cards, I've found it to be less expensive then buying the PECS cards. I agree with Renee's reply as well, do your research, find what works for your child and your family. It can take some time but when you find what works you will all be happier and more able to stick with your plan.

Renee - posted on 04/27/2010

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A diagnosis means a starting point, to me now you know where you are. The journey begins! My son had no speech until he was 4 years old but within 6 months he was talking. So, there is always hope and never let anyone take that away, it's something every person on this site needs.



I would go to Google and put HALO and Soma in the search line. It's a remarkable place where completely non-verbal children can learn to communicate. IF you need it down the road, you will have that reference already.



We have not done the GF CF diet for two reasons - one it is not medically proven to do anything and two our child did not have the leaky gut thing. But if it helps him I say do it. Other reasons we did not do the diet is that his developmental pediatrician said that trying to force a child who has an already limited diet to eat strange foods can make eating issues worse. And we knew he would be going to school and we didn't want him to be subjected to more ridicule by sending food that looks foreign to most other kids. Why make things harder than they are.



Read everything you can about autism. Amazon is a great place to start they have thousands of books on autism. Learn to interact with your son as soon as possible it will help you immensely down the road.



Good luck!

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Rachael - posted on 05/01/2010

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wow some great replies
and thank you Sheila for explaining that to me so well

Thank you all of you for the advice and support

Melissa - posted on 04/27/2010

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I have lots of advice (autism research fanatic, lol) but I will first say that I think you are heading in the right direction. Being in therapy along with a special pre-k program has done wonders for my son over the past 2 years. We limit gluten and casein, but I do not eliminate it completely. It has helped his digestive system, but not noticably affected his personality, quirks, or anything else. My suggestion is to try therapy first, then if you still want to do dietary changes, substitute dairy, then later wheat/barley, etc.

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