UPDATED! Think 2-year-old may be on the Spectrum but too scared to find out :( - Page 3 - Mothering Forums
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#61 of 92 Old 08-07-2011, 04:11 PM - Thread Starter
 
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Well, I wouldn't consider it false hope in that it's great that he is improving in that area thumb.gif. He's soooo young and you are getting started early on interventions which is great...labels at this age are fluid as there is such a wide range of development in all children.


Thank you!!! :)

 


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#62 of 92 Old 08-07-2011, 04:15 PM - Thread Starter
 
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But I've embraced all the awesome, wonderful qualities that he has and I know - I KNOW - that with a few years in his early intervention program and his new school, he will be just like all the other kids when he started kindergarten.


I heartbeat.gif this!

 


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#63 of 92 Old 08-07-2011, 08:26 PM
 
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But I've embraced all the awesome, wonderful qualities that he has and I know - I KNOW - that with a few years in his early intervention program and his new school, he will be just like all the other kids when he started kindergarten.

It's very important to recognize, appreciate, and celebrate the talents and wonderful qualities any child has. This is especially true for kids wit autism. At the same time, you need to be careful about assuming that these traits (even when they border on giftedness) can completely compensate for the deficits that are part of autism.

My son has some amazing qualities that came along with his autism. He is hyperlexic, so he could read at age 2 even though he didn't talk until he was almost 3. He also has advanced math skills and a near-photographic memory (which is even more amazing when you consider that he has a visual impairment). He is witty and funny in his own idiosyncratic way and has unusual feats of logic. He is affectionate and loving, completely without guile.

When DS was in Early Intervention, I told myself that i could accept having him in EI and special needs preschool because I knew he would be able to go to regular Kindergarten. During DS's last year in preschool, it was apparent that he needed to be in the autism classroom for kindergarten. At first, I was devastated. Then, I decided I could deal with that, because we would work on mainstreaming during kindergarten and then he would be in a regular first grade class. Then I saw how much the autism classroom was the right fit for DS and he was truly not ready to be in the regular kindergarten classroom. I could see that it wasn't a matter of academic skill. In the autism classroom he was learning to take instruction in a group setting and other appropriate classroom behaviors. Basically, I learned that I needed to stop setting my own mental timeline of how and when DS would be mainstreamed. We and his teachers would make those decisions as the years progressed and nothing had to be written in stone. Realizing this was like an incredible weight being lifted off my shoulders.

Last year, DS partially mainstreamed in the first grade. He spent mornings in the regular first grade classroom and afternoons in the autism classroom. He rejoined his first grade class for specials (art, music, library). He had pullouts for his therapies and for reading enrichment (his reading level is several years above his classmates). When he is in the first grade classroom, he had an aide to help. DS was very successful in this arrangement and he loved school.

This year, we will be doing something similar for second grade, although we will be gradually increasing the amount of time he is in the regular classroom. We do not want to eliminate his time in the autism classroom, because DS uses that as a safe place where he can be himself without the stress of having to "keep it together" all day.

My point is, that in those early years, you really can't be sure which kids will be able to go into the regular classroom right off the bat and who will need additional support. As Linda on the Move often says, at some point you need to make peace with the unknown and just things unfold as they come.




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#64 of 92 Old 08-10-2011, 12:25 PM - Thread Starter
 
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Hey Lolly, thanks for your post too! I think I'm having a hard time making "peace with the unknown", as you guys say. At the beginning of this thread I stated that my son didn't hand flap, and that was the truth.... til now. mecry.gifDuring the past few days I have seen him hand flap and also put his hand in front of his face to watch his fingers. I'm so sad. Is he going to be 13 years old and doing this? Is he still going to be speaking gibberish in 5 years? :(

On a better note (I guess), he has learned a few new words (including "Mommy"), although he doesn't say them in a meaningful way.

 

Someone please tell me your kid did these things as a toddler or preschooler and now (as an older kid) does not, or at least can speak now. Feeling down and need some hope.


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#65 of 92 Old 08-10-2011, 01:48 PM
 
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OP-- About EI commenting that kids with ASD do or don't do certain things...please take it with a grain of salt.  I've worked in EI and worked with a lot of kids with ASDs.  Even so, when my son started showing red flags, I could not say if he did or didn't have an ASD.  Neither could his developmental pediatrician who is known throughout our state as the "expert" in ASD and person to take your child to if you have concerns.  We waited almost a year to get in to see her, and have waited another year for his next upcoming appointment.  When I worked in EI, our supervisor always told us to keep our mouths shut when parents asked us if we thought their child had an ASD.  I, and others, had a gut feeling about many kids, but we didn't know.  For her to make those comments to you is not responsible of her.  She doesn't know for sure one way or another.  Bringing toys to you does not rule out an ASD.  

 

Have you looked at your son's diet at all yet?  GFCF plus a few other things related to yeast made a huge difference with my son.  A year and a half ago, before we started the diet, I was 95% certain my DS would one day have an ASD diagnosis.  Within weeks of him starting the diet, I was 95% certain he would no longer meet criteria.  We still don't know for sure as I've had to cancel his follow up with this ped due to being on bed rest myself, so we will find out soon.  Regardless, the improvements in his mood, behavior, and ability to connect with us have been nothing short of a miracle in our minds. 

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#66 of 92 Old 08-10-2011, 03:53 PM
 
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During the past few days I have seen him hand flap and also put his hand in front of his face to watch his fingers. I'm so sad. Is he going to be 13 years old and doing this?


may be when he's stressed, but it can still have a wonderful life and have friends and hobbies and pretty much everything else you want for him. wink1.gif

 

When we were touring the alternative school where my DD now goes, I saw a boy about 13 sitting in a class and flapping his hands. My first thought was "A kindred soul!  they know what to do with my kids like my DD here!"

 

I've gotten to know him now that my DD goes to school there and he's a nice kid taking normal middle school classes (though with a smaller student teacher ratio, more hands on learning, etc). He's very likable. As far a bad behavior for 13 year olds, hand flapping is pretty minor. And he only does it when he is stressed or excited.

 

One of my friends son's (who was still pretty much nonverbal at 4) can carry on simple conversations at 7. You really never know.

 


but everything has pros and cons  shrug.gif

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#67 of 92 Old 08-11-2011, 12:17 PM
 
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So this is the thing....sitting around and not addressing this is not helping you or him.  So many of those symptoms are medical based that if you don' t jump on treatment, diet, therapy,etc.. early it can possibly lead to worse autoimmune issues, massive amount of bowel damage- polyps, lesions,etc..., behavior issues that are extremely hard to stop because that is what he is used to doing when he has stomach pain, sensory overload,etc..-hard to undo, mitochondrial damage, etc.... For example,  IF the child has Cerebral Folate Auto-antibody Receptor -blocking or binding - studies have shown high dose of Leucovorin -Folinic Acid, can completely undo all "autism" symptoms by the age of 3.  Simple blood test sent to Quadros at Suny University.  You have to jump on this early,  I know many families that are doing this past age of 3 and seeing outstanding results - massive communication, eye contact and attention, but if someone had said do this when we got the checklist diagnosis we would have been on it like glue - nothing to loose on this one. Diet - easy - seriously tons of books, websites, it is sold everywhere if you lack cooking skills.  As someone else posted autism.com is great source of information.  Natural practitioners are all over this as well.    There is a wealth of info out there, great sites to join, massive amounts of books to read and magazines....but you have to do it.  I am not a "whoas" momma - my son was injured, lost everything and was diagnosed with Autism. I searched and read online, bought books, went to conferences where my head was swimming with information I did not understand-yet.  That is the kind of mom I am and understand not everyone is like this but as Moms we have skills like know other - so use them in anyway you can.

 

 Just by treating the medical issues - AUTISM IS A MEDICAL CONDITION...Eye contact back, drooling -stopped, daily "normal" bowel movements", eating all sorts of healthy good for your body foods, no tantrums, no hitting, no throwing, all gone! Just by addressing food allergies and sensitivities, yeast overgrowth, deficiencies, mitochondrial dysfunction, and more - all back.    It isn't fair to anyone to just assume, quirkiness, overly affectionate, OCD behaviors,etc..will be outgrown, "cute", etc...  It could be a zinc deficiency, food allergy, environmental allergy, sensory issue, etc...and when addressed it goes away.   It is not the same world as when we were kids - there is a heck of alot more pesticides, herbicides, preservatives, artificial dyes, colors, processed food, chemicals in just about everything - hello sprayed on pjs, cereal, mattress, drinking water! Antibiotics are given out like candy without processing the piggyback affect, nor any reflection on its destruction of good bacteria when you hit the peds office. Dealing with a ton of ear infections - put tubes in is the common way of dealing with that then the removal of tonsils and adnoids - maybe they should slow down on the paycheck surgery and find out if pasturized homogenized cows milk is the culprit - 95% it is. Several milk alternatives are available, studies prove the link between cow's milk and ear infections - but your doc actually has to read the studies to know this.  Our society is the sickest ever - do you remember it being like this when you were a kid? Ask your parents - they would say no too. It is MEDICAL - there is help and thousands of kids are loosing their diagnosis.  I am sure if my son was retested with that stupid checklist - he would not be diagnosed with Autism or even on the spectrum.

 

Tacanow.org is awesome so is generationrescue.org - both offer to hook you up with a mentor if you want one.  You have nothing to loose, but everything to gain.

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#68 of 92 Old 08-11-2011, 02:24 PM
 
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 Just by treating the medical issues - AUTISM IS A MEDICAL CONDITION...


I'm happy for you that you've had such success with diet changes and supplements, but you come across like that is the answer for everyone.

 

It's not.

 

Diet changes have no impact on my DD, but sensory input does. Different things work for different kids.

 

And my kid is still on the spectrum. And I know lots of parents who've tried lots and lots of things and still have a kid on the spectrum. I think it would be nice if you could find a way of sharing what has worked for your child without sounding like you have all the answers.

 

No body has all the answers.

 


but everything has pros and cons  shrug.gif

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#69 of 92 Old 08-11-2011, 04:14 PM
 
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AUTISM IS A MEDICAL CONDITION. -

Autism is a diagnosis based on behavior. Therefore, what we call "autism" is not just one thing, one single disease or disorder. It's an umbrella term that describes what is probably several different conditions that have similar and overlapping behavioral symptoms. Some individuals have medical conditions (such as allergies/environmental reactions, metabolic disorders, nutritional deficiencies, seizure disorders, etc) that cause those symptoms. In some cases, autism may be part of a larger syndrome (such as Fragile X or chromosome disorders). In some it is neurobiological, a matter of the brain being "wired" differently. Sometimes autism is due to a combination of factors.

This is part of why autism varies so much from one individual to the next, in how their symptoms present and in how they respond to different treatments. What helps one person with autism can make another worse and have no effect in yet another.

Oceanbluemomma, I'm glad you've had success with your approach. Other families may find other approaches to be more appropriate in their own situation.


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#70 of 92 Old 08-11-2011, 04:24 PM
 
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Hey Lolly, thanks for your post too! I think I'm having a hard time making "peace with the unknown", as you guys say. At the beginning of this thread I stated that my son didn't hand flap, and that was the truth.... til now. mecry.gifDuring the past few days I have seen him hand flap and also put his hand in front of his face to watch his fingers. I'm so sad. Is he going to be 13 years old and doing this? Is he still going to be speaking gibberish in 5 years? :(

On a better note (I guess), he has learned a few new words (including "Mommy"), although he doesn't say them in a meaningful way.

 

Someone please tell me your kid did these things as a toddler or preschooler and now (as an older kid) does not, or at least can speak now. Feeling down and need some hope.


No one expects you to make peace with the unknown when you are at the start of the journey. It's a process that takes time. And that's OK.

My son hand flapped and flicked his fingers as a toddler and preschooler. He also stared at ceiling fans and loved to open and close the cabinet doors. He did't talk until he was almost 3 and even then it was all echolalia and scripted speech.

Now he is 7. He's very verbal, but he still has difficulty with pragmatics (the social use of language). He can carry on simple conversations about everyday things. We are still working on asking questions to gain information (as opposed to asking questions he already knows the answer too) and on expressing his feelings with words. He makes witty remarks that show an offbeat but delightful sense of humor and unique logic. I love discovering how he thinks.

He does sometimes still move his fingers around in front of his face. Usually he's writing in the air or doing math problems "for fun".

Lolly
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#71 of 92 Old 08-12-2011, 12:45 PM
 
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My post is mine, I am not claiming to be an expert and of course what I have posted consists of my opinion as well as medical facts.   I did not state any one combination or thing is a "cure" but there is confirmed issues like - CFAR-that if treated early can reverse those symptoms and help those of any age.  Seems like an easy blood test to start with that results in no animal milk protein and high doses of folinic acid - something the body is showing a need for.

 

Autism is a medical problem.  Every behavior that is on the DSM-IV checklist has a medical reason.  Lack of eye contact - nausea, headaches, food/environmental allergies, biofilm, cerebral folate issues, etc.. Explosive behavior -food/environmental allergies-sensitivities, stomach/bowel issues, constipation, diarrhea, toxic heavy metal loads, biofilm, yeast overgrowth, etc.  Withdrawn socially - again see eye contact causes, parasites, yeast overgrowth, sub-clinical seizures, BAH4 deficiency not PKU, MTHFR.  I have not met a child or family yet in this process where no medical issues were involved - NOT ONE.  OCD/Repetitive behaviors-food/environmental allergies, mineral deficiencies, yeast overgrowth, biofilm, strep in the gut, tourettes, lyme disease, etc... Simple blood work, stool testing, hair, spit, skin,etc...can reveal a ton of information.

 

There is NOT one set order on what to address, not one child is alike on this process - which makes this healing process unique to each child and adult dealing with this diagnosis.  Obviously something is causing this epidemic and it is a fact that genes do not cause epidemics - it is impossible. We know vaccines are trigger for some, we know rhogam and pitocin has been linked to higher incidents of Autism diagnosis. We know that antibiotics can lead to mitochondrial dysfunction which can cause more to spiral.  

Some 1-3% have a genetic piece but does that mean those diagnosed with Downs shouldn't address the arthritic symptom because Downs is genetic?

 

The checklist has gone toe to toe with physicians actually treating these kids and EVERY checklist symptom has a list of possible medical issues that are causing them and when treated kids and adults are rebounding left and right.

 

Study after study is being released on this - a recent study within the last 30 days showed spontaneous DNA changes have been identified with those diagnosed with Autism - something is causing that.  It is a medical issue.   

Wake Forest shared that 2/3 of the kids in their study have the measles virus from their vaccine in their bowel - um not supposed to be there and they have a diagnosis of Autism

The list could go on and on and on.  There are a ton of medical books, study after study -mainstream and alternative that show this results in that.  

 

I NEVER said diet and supplements were the "cure".  For many it is a starting point. For some it isn't enough to do alone. For some it shows no gains possibly because of breeches, severe bowel issues, etc...which would require other ways to heal the gut and brain, maybe GAPS, Modified Atkins, SCD, Body Ecology,etc...  Again food allergy testing and sensitivity -IgG and IgE would be a great to with this so you know what exactly is an issue.  Say for example the tests comeback with 10 food triggers and Gluten and Casein are 9 and 10, you wouldn't "see" huge changes or healing because the first 8 are still damaging and/or causing issues.  Should you still remove 9 and 10 - yup but you need to know the others too. You would need to do the medical test with a good medical lab to find out. 

 

Think about it, it is well known that gluten has an opioid affect on the body.  Most spectrum kids crave simple sugars - carbs and some simple fruits, candy, anything sugary or colorful-cereals-sugars or only eat specific things.  Those feed the opioid affect.  You take those away, many have massive behavior issues for weeks due to their body going through withdrawal - like a drug.  There are simple supplements to take to lessen that a lot, some kids have now withdrawal -wish we had one of those.  The diet has to be followed 100% because of this for months upon months because otherwise it is like giving a taste of a drug to an addict.  Study after study has shown this. More foods may need to be removed or rotated as well as stated above.

 

The sooner the medical stuff is identified, hopefully the issues can be stopped or reversed.  That is the issue, don't be scared to find out - find out and make a plan.  Not knowing about CFAR for our son who regressed at 3 sucks - he might have had a complete symptom reversal.  We found out about it at a conference and Internet groups when he was almost 5.  There a TON of medical autism groups. Most peds can't even keep up with the studies let alone read them.  My husband and I spend our nights reading and learning.  Autism Science Digest - a magazine solely addressing medical issues.  The Autism File has medical articles and studies as well.  NAA, Autism.com, GR, A1, tacanow.org, AIM via Meetup.  need books - (sorry not sure on how to make this smaller)

Age of Autism by Dan Olmstead and Mark Blaxill

Autism: Effective Biomedical Treatments by Jon Pangborn

Changing the Course of Autism by Jepson

Children with Starving Brains by McCandless

Evidence of Harm by Kirby

Healing and Preventing Autism by Kartizinel and McCarthy

 

Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Kenneth Bock, MD and Cameron Stauth

Louder than Words and Warrior Mothers by McCarthy

Nourishing Hope by Julie Matthews

Autism - Pathways to Recovery by Yasko

Special Diets by Lewis (ton of books on this)

A Mother's Story of Research and Recovery by Seroussi

Vaccine Epidemic by Habakus

Linda on the move- I too know many families who have tried and done everything in every order and still have a diagnosis of Autism.  But they are no longer giving foods that they are allergic too, giving supplements to help with the identified deficiencies, etc... This is a roller coaster diagnosis that is for sure - but why wouldn't find out what is medically going on -especially the simple stuff - poop, blood, pee testing? 

Take a look at the symptoms listed for mercury poisoning and that of Autism - almost identical.  But for mercury poisoning they actually do a medical test to find out.  

If you delve into this medically, you will see what hundreds of thousands of us know - it is medical. Feel free to PM if you want more info or where to get help. To each is own on their journey but you have to start the journey to make it your own.   Do you need a diagnosis of Autism? Nope - look at the symptoms or behaviors check out what medically could be causing it. Truly mind blowing stuff you wished every doctor knew.

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#72 of 92 Old 08-12-2011, 05:51 PM
 
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Moderator note:

Oceanbluemomma, this forum is for support only, not debate.  Please respect that. In the Special Needs Parenting forum, it is especially important to respect each other.  Also, there have been some complaints of all of your links slowing down the page loading, so I must remove those from your last post.  Feel free to list the book names without the links.

 

Actually, I don't want you to have to lose your list, so please edit out the photos of the links and just put the booklist.  If I don't see it changed by tomorrow morning, I will edit them out. 

 

Thank you

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#73 of 92 Old 08-13-2011, 01:26 PM
 
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Lisa,

 

Updated - figured out how to edit but the list still looks sloppy - sorry.   It is a great list but wasn't able to shrink it with font size when I posted it, sorry.  

 

Agreed - it is a support forum.  I felt I needed to clarify, not debate, what was posted.  Support does come in many forms though - hand holding, kind words, positivity, information and experience sharing,bringing over a box of chocolate, wine and anti-bacterial wipes on a poop smearing on the wall kind of day and even bluntness at times.  Hindsight really sucks on this journey so knowing all the options available is extremely helpful during this time.  

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#74 of 92 Old 08-13-2011, 07:06 PM - Thread Starter
 
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Thanks everyone for the kind words. I am feeling better today. I am seriously thinking of doing the GFCF diet... how do you start?

 

So someone from Kennedy-Krieger is going to call me soon, I spoke with them yesterday and and they said they will get my son in for an eval with them in the next 6 weeks! He will see a speech therapist, occupational therapist, and clinical psychologist, and if they decide he has a diagnoses THEN he will see either a developmental ped or ped neurologist. Having mixed feelings, glad to be getting on with it but nervous to get the official dx, kwim?

 

Meanwhile my DS has his first OT session (thru EI) this Tues and I am excited about it. The early ed teacher will start coming out on the 31st, most likely.

 

ETA: Thanks Lolly for your post!! :-)


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#75 of 92 Old 08-13-2011, 08:03 PM
 
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We've been doing the GFCF diet for about 6 weeks now. It's harder with older children because they are more aware of what is in the house, what they are eating, what they are missing, etc. With a 2 year old you are golden and I wish I'd known about this then - it would have been easier. 

 

There's a great book for starters called the ADHD and Autism Cookbook that will give you ideas of what you can and can't eat and recipes for some great meals that kids like. I found that not eating the usual "illegal" foods for a bit and then reintroducing GFCF varieties of that same food worked. DS seemed to "forget" what they tasted like (because trust me, no substitute will ever taste like the real thing! but it can still be okay). During the time you are not serving the "illegal" favorites, keep serving those things that are already G and C free.

 

There are lots of great recipes around, but I've found that some worked great and some were disasters. I spent a LOT of money on food the first month as I figured out what worked and what didn't. When you find a good recipe, keep it handy. Now that I've got a selection of meals I can make it has gotten easier. At first I was buying a lot of prepared foods, like pancake mixes, etc. but now I have a good stock of various flours that are needed for GFCF baking and I make stuff from scratch now.

 

I would also encourage you to stock up on GFCF candies, cookies, and even ice cream for those times (which are sometimes unexpected) when someone whips out a treat for your kid, or is handing out treats to the kids you are with. Your child is far more likely to be okay with being told "no, sorry, you can't have that...but you can have THIS!" if "this" is something he likes and for us at least it went over well. The only time we ever had an issue over this was when our friends served ice cream...in cones. I'd brought the dairy-free ice cream but didn't get GF cones and my son freaked out b/c I wouldn't let him have a cone. Lessons for next time!


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#76 of 92 Old 08-14-2011, 01:11 AM
 
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I just wanted to say that as our kids get older, some things will become apparent as other things fade or get dealt with through therapy, etc. At first whenever I saw a "new" sign of ASD, my heart would break. But my child is becoming more aware of her world and it's affecting her in many ways. Some of them bring about ASD responses at times. But she's lost some of the other signs, too, as she's got older and more able to understand or cope.

 

My DD didn't ever hand flap, per se. Certainly not at the time of her diagnosis. But shortly after that she began bringing her shoulders up to her ears and her clenched fists up to her face whenever she got upset. Now after a year of therapies, when she gets upset or mad she sort of shuts down a bit - stops talking to us and acts out. Lately she's begun crying when she's upset. Oddly enough, we're looking at it as a good sign of her emotional development. She's got HUGE anxiety and getting to the roots of what makes her anxious will help her so much. But she's been ... afraid ... to even go there to the point that for the longest time she refused to even consciously be aware of what makes her anxious/angry/upset/etc. Now ... she can cry. It's huge for us.


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#77 of 92 Old 08-16-2011, 09:26 PM
 
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My son had a 2nd opinion diagnosis by a developmental pediatrician and he almost laughed at the psychologist's report - said my son is not showing signs of autism - said he has quirks but is very much on track. We're extremely confused, but we're continuing with early intervention anyway! He's staying at his specialized school because sometimes at 2, those "quirks" may mean something else. And enough "outside people" have been around him and have raised their eyebrows at his not acting like a "typical" 2 year old boy. We started my son on GFCF, went caseine free first as it was the easiest and then went GF - which was much more difficult! We were on it several months and I didn't see a bit of difference, so he's back on a regular diet. I have, however, removed food dyes and cut back on his carbs quite a bit. My son is prone to tantrums, so this seemed to help him more than anything. However, a girlfriend of mine whose son is autistic has shown tremendous improvement with the diet, but he was always prone to GI issues - my son has never had any. I truly believe it is a treatment that shows case by case promise.

 

Your son sounds like an amazing little boy and he obviously has a momma that cares a ton about him! There's a ton of information on behavioral therapies that you can work on at home with your little boy. I know the autismspeaks website has a lot of information! Good luck to you!

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#78 of 92 Old 08-16-2011, 10:23 PM
 
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Maybe it's due to my resources but to get our dx it was a group effort. A specialist pediatrician, a psychologist and ot group a speech group.. I don't know but like 10 different people had their own time and own reports filled out. Each group had a 10 page eval and only when it was all put together did they give her the dx of pdd-nos and to reevaluate a year later. At this points she has autism to be simple but she's young. The test was pages of forms and hours at a specialized center. So to laugh at another professional seems.. unprofessional. It all links together. A pediatrician looks at the physical and everyone else has their own specific things they look for. It was pretty interesting.

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#79 of 92 Old 08-17-2011, 09:06 PM
 
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Also wanted to add that a friend of mine whose son is 8 and severely affected (prefers to be non-verbal, very hyper, no focus, no eye contact, etc.) put him on CFGF about 3 years ago and the difference in his behavior stunned her. It's totally working for them. We tried it with our DD for almost 7 months and there was no difference other than she relentlessly wanted the foods she remembered having that were no longer available. We returned her to a normal diet without artificial dyes, flavors or additives and HFCS (high-fructose corn syrup) free. That has made a noted difference. She reacts strongly to artificial colors and additives such as sweeteners and nitrates. They make her behavior tank. As an example, her Nana (bless her) gave DD a bag of Doritos the other day and she was an absolute nightmare for the next 9 hours as her body processed all the garbage in those blasted chips.


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#80 of 92 Old 08-18-2011, 08:01 AM - Thread Starter
 
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Quote:
Originally Posted by alestrange View Post

My son had a 2nd opinion diagnosis by a developmental pediatrician and he almost laughed at the psychologist's report - said my son is not showing signs of autism - said he has quirks but is very much on track. We're extremely confused, but we're continuing with early intervention anyway!

 

Does your son talk? Does he have the typical signs like lining up toys, toe-walking, spinning, lack of eye contact etc? What made the psychologist dx him as having asd and not the dev ped? Sorry for all the questions, still trying to understand it all! My son does a lot of the "typical asd" things, right now he is lining up toys as I type. ;) I would be really shocked if he didn't get a dx. He has some new words and phrases, just in this last week, but he doesn't really use them meaningfully. Although when I pulled the plug when he was taking a bath last night he started singing the "clean up" song that I always sing to him when we clean up his bath toys. :)

 

His OT was AWESOME!!!! She said he is a "sensory seeker" that craves "deep input". The way she explained it is that his touch and taste senses are underwhelmed, and that's why he likes being squashed and squeezed. She showed me how to do joint compression on him, and how to flex and stretch his feet (his calves are tight from so much toe walking)... after she worked on his legs and calves he stopped toe walking for a good half hour at least! She also said we should get some heavy bean bags to "squash" him in between when he's feeling stressed. She also asked if he stuffs his mouth with food (omg!!!! He does!!) and said it's b/c he sense of taste is not sensitive and so he does that to try to taste food. She said to feed him spicy food (he LOVES spicy food, now we know why!), sour, crunchy, etc. He also covers his ears and seems to be sensitive to loud sounds (some loud sounds), but he also covers his ears when he's stressed or doesn't like something and the OT said it's his way of shutting himself out when it's more than he can handle. In the IFSP EI put that she would come once a month but she is getting it changed to once a week b/c of his extensive sensory issues. I feel like I learned a lot in our first meeting!! She totally man-handled DS and he LOVED it, she explained that that is what he needs.

 

I asked her about the GFCF diet and she said the same as you guys, helps some and not others. She said to try it and if I don't see a difference in a few weeks to stop- do you guys agree with that? Thanks for all of the advice and info about the GFCF diet!!

 

Piglet68, you said you've been doing the GFCF diet for 6 weeks now... have you seen a difference in your son??

 

How do you know if your kid is prone to GI issues (alestrange you said your friend's son is prone to GI issues and the diet worked for them)?? He has soupy poops but he does drink a lot of juice- would this mean GI issues? I have no idea!

 

beachcomber, I totally agree about the dyes! My kids eat almost all natural, whole foods, but when my oldest son (who is NT) was young we noticed if his grandparents gave him a popsicle (one of the fake ones with red dye) or "fake" fruit punch he would be bouncing off the walls!! We learned back then our kids can't handle that stuff, not that we eat/drink it on a regular basis.

 

babygirlie, it really does seem like a huge group effort! So far, everyone who has seen my son and evaluated him has said the same things. He hasn't been to kennedy-krieger yet so we'll see what they say. It's weird but I almost WANT the dx of asd now, just so he can get all the best (and free!) services available. The county we live in has a TON of services, it's amazing!! The OT was saying they have special classes for the birth to 3 group that use ABA, one of the teachers trained at kennedy-krieger (she's one of the ones that will be working with my son)...they will even send a taxi to my house for free if I don't have a car (one of our cars' engines bit the dust months ago so we are on one car right now) to take my son and I to the center. I am so grateful for all of this help we have! She also said when he turns 3 he can start going to those special ed preschool classes, and said they have one just for kids with asd (all free thru the state). I'm sure most of you are already familiar with all this stuff, but I was excited to learn this is available!
 

 


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#81 of 92 Old 08-18-2011, 09:10 AM
 
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I asked her about the GFCF diet and she said the same as you guys, helps some and not others. She said to try it and if I don't see a difference in a few weeks to stop- do you guys agree with that? Thanks for all of the advice and info about the GFCF diet!!



Wheat/gluten can take a long time to clear.  I think the typical suggestion is to pull it for at least six months.  Some say 12.  Believe me...it is way easier to pull it on a kid who doesn't totally realize what you are subbing on him than one who does realize it.  You may want to look into have him tested for food allergies as well.  We did this with DS and although he did not have a wheat or dairy allergy (but clearly does have an intolerance to them), he did have a couple others that we did not know about at all.  You may want to post on the allergies forum for more GFCF info.  For instance, something like 80% of kids who react to dairy also react to soy, so you would likely want to pull soy too.  A really good book we read was called Feast Without Yeast by Dr. Bruce Semon.  He has a son with autism and is himself a psychiatrist who has a regular practice, but also offers patients a more holistic natural approach to treatment as well.  The book is on Amazon.  He has a list of foods he suggests pulling in addition to GFCF.  We have noticed that DS reacts to many of those foods even more than gluten, although dairy turns him into a total terror immediately.  If you want me to pm the food avoidance lists to you, let me know and I can do that, although it is helpful to read his explanations and the book also has tons of recipes, though many are not GFCF which is the third step of four in how he removes foods.  Personally, we just did the GFCF and all his first two lists right away.   Also, in terms of sticking with the diet even when you don't think it is helping....individual kids have different food reactions.  We had been GFCF plus all food allergy positive foods free for months but still knew something was not quite right when we figured out DS reacted to sunflower oil which is in everything.  Pulling that made a huge huge huge difference.  The diet thing can be tricky, but many have great results, so I'd encourage you to stick with it for quite some time even if it doesn't seem to be helping immediately.  It is definitely overwhelming the first month or so.  I cried in the grocery store... But, a few weeks into it, we were pros and cooking/shopping were as easy as ever. 

 

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#82 of 92 Old 08-18-2011, 01:56 PM
 
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He talks now, but that's what got the whole process started. He only had about 4 words at 20 months, so we had him evaluated by our regional center. From there, they had SLP, OT, PT and the whole lot of them out to work with our son. We started him on Baby Signing Time DVD's and language just exploded. He's now 25 months and he has well over 100 words and is putting 2 and 3 words together. As far as the other markers, he SOMETIMES walks on his toes, but not all the time, he doesn't spin, has fantastic eye contact, no twirling or hand flapping. At the time of the pysch's eval, he was doing the headbanging when he got ticked or frustrated so she categorized that as self-stimulatory behavior. She put that he didn't engage in joint attention, which he does - there were just a lot of things off about her report. She marked his health/safety habits down since he doesn't yet tell us when he has to go the bathroom - he's TWO! The developmental ped said sure, he has quirks, but not autistic. As I said, either way, we're keeping him in the specialized school, because I don't know if those quirks may manifest into something different that is an autistic marker and the early intervention has been fantastic with helping our son with transitions and they're currently working on the social anxiety that he deals with. I can't say enough about the EI helping our son, autistic or not, quirky or not - it's a fantastic program and they can certainly help kids that have any type of developmental delay -speech, autism, any ASD, or just the quirks! Since no one seems to have a definitive answer on our son, we'll keep doing what we feel is best!

 

Good luck with the GFCF diet! My girlfriend said her son was always constipated and just had intestinal issues - so she gave it a shot and she eliminated all caseine but not ALL gluten - that she just watches the intake. As everyone else has said, seems to work for some - not so for others. We went the route of no food dyes for now, which is a much easier change - especially since GFCF didn't do anything for my son =(

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#83 of 92 Old 09-07-2011, 09:14 PM - Thread Starter
 
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Just wanted to update and let you guys know my son's official eval at Kennedy Krieger is at the end of Nov!!!


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#84 of 92 Old 09-09-2011, 03:55 PM
 
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Yay!


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#85 of 92 Old 10-07-2011, 01:45 PM - Thread Starter
 
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Just wanted to update once again (and thanks Beachcomber!) :)

 

My son had his 2nd assessment today through EI since he is getting close to his 3rd birthday (he'll be 3 in March). He's been getting OT once a week, speech once a week, and goes to a playgroup for all kinds of SN children (through EI) once a week. DH and I also go to Hanen "More Than Words" classes about 2x a month... needless to say we've been busy! Like I said in a previous post our official eval at Hopkins is at the end of Nov.

 

Today's assessment was done by his OT, ST, and the early ed teacher that comes to our house. He had one or two meltdowns but did MUCH better than he did at his first assessment, which was at the beginning of Aug. He scored 6 months ahead of where he scored during his last assessment (in cognitive) so that was exciting! I really give all the credit to EI, I can't stress enough just how much they have helped him. I am so glad I didn't keep my head in the sand and ignore DS's issues. He still has a long way to go but the progress has given me a lot of hope! :)

 

Next week someone is coming to talk about transition at age 3. Dh and I already sat in on a CAPP (Comprehensive Autism Preschool Program, free thru the state like PEP) class and were REALLY impressed. They do ABA 4 hours every day, and 2 hours of "regular" preschool stuff. It's a 1:1 ratio and they have all sorts of sensory stuff in each room (the elementary school where the classes are held have a whole section of the school just for this program, 3 or 4 classrooms), like sensory balls, trampolines, and swings etc. They also have wagons and tricycles. And they also potty train (when the child is ready)!!! Dh and I will also be sitting in on 3 different PEP classes at the end of this month, but I def think the CAPP class will be the best fit.

 

Thank you so much everyone for all of the support and honesty!!! I will keep you updated. And for anyone who suspects their child may have ASD please don't do nothing!! The therapies work! :))

 

ETA: I also wanted to add that all the sensory stuff the OT has been doing and been teaching us to do has made a huge difference too!! DS is still having runny poops (we haven't started the gfcf diet as of yet although I stopped giving him milk and wheat products. I know the diet is way more restrictive than that but we will def be doing it soon in the near future) so we are going to be taking him to a ped GI specialist at Children's here in DC that is supposed to be really good.


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#86 of 92 Old 12-03-2011, 10:57 AM - Thread Starter
 
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This will probably be my last update for this thread, but wanted to let anyone know who comes across this thread that my son was officially diagnosed with autism this week at Kennedy Krieger.


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#87 of 92 Old 03-10-2012, 10:26 AM - Thread Starter
 
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I know it's been awhile since I've been here but I want to update for any newbie that comes across this thread.

My DS turned 3 yesterday and will be starting the CAPP preschool program (6 hrs a day, 5 days a week) on Monday!! He wasn't doing too well (meltdowns etc) at the Infants & Toddlers (EI) autism class that he was going to 3x a week (90 minute classes) so a month ago they took away his Tuesdays and Thursdays and was just going Wednesdays. Wed's they were in the big "OT" room and he did MUCH better. We also started at CSAAC (http://www.csaac.org/supportcsaac.htm), which is private therapy but EI footed the bill (yeay!). I cannot say enough about CSAAC... not to knock EI because they definitely helped a LOT, but he progressed more in the month he was with CSAAC than he did in the 6 months he was getting services with EI (3 of those he was in the EI autism class). He is responding so well to ABA, it is unreal!! I know ABA doesn't work for all kids (as in one of my good friends whose son with autism learns better in a natural environment) but it is working wonders for my boy. He is a whiz at puzzles, matching, his language has exploded in the last month... he's not talking conversationally yet but is repeating EVERYTHING and will now use "up!" if he wants to be picked up, although not every single time. He has started leading me to his diapers when he wants to be changed (although this doesn't happen all the time and is only when it's a poop). When we were leaving for an appt last week he walked over to my mom and gave her an UNPROMPTED hug (she was at my house to watch my 13 month old)!!!!! We still have a ways to go but I am VERY hopeful about his future!! He will be getting 4 hours of ABA in his preschool class a day. Only thing I'm nervous about is him getting on the bus by himself (well there is an aide but you kwim), he's so young you know?


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#88 of 92 Old 03-15-2012, 05:13 AM
 
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I have just read though your thread for the first time, and just wanted to come in and say how awesome you are for following your gut and doing what was best for you son. I'm currently awaiting our first appointment to have DS (3) assessed, and am constantly second guessing myself for many of the reasons you spoke of.
Much love to you on your journey x

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#89 of 92 Old 03-15-2012, 07:52 AM - Thread Starter
 
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I have just read though your thread for the first time, and just wanted to come in and say how awesome you are for following your gut and doing what was best for you son. I'm currently awaiting our first appointment to have DS (3) assessed, and am constantly second guessing myself for many of the reasons you spoke of.
Much love to you on your journey x


Thanks Eloisa!! GL with your son's assessment, when is it?

 


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#90 of 92 Old 03-16-2012, 02:38 AM
 
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The first appointment is next Thursday. I'm rather nervous at this point!

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