Help! What do I do next (from a Newbie)? | Autism PDD

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Thank you for the replies. 

Shelly, Liam has been on the diet for 6 months.  He is no longer congested and his intestines...are well....normal intestines.  I want you to know that your postings about the diet inspired me to investigate. 

Fred, I will check out our local March of Dimes, as I know they do provide autsim references.  Should I do this before or after the assesment results?  If Liam had an assessment 9 months ago, I know what the results would be.  But with some home interventions (some of which I already mentioned), he has dramatically changed.  The only major remaing issues are OC behavior, stims and speech (he is virtually non-verbal). So...I wasn't sure whether to seek out a neuro before or after his assessment.

Babyboy, you hit the nail on the head.  My biggest concern about this whole process was of Liam being overwhelmed by therapies/docs/test, etc.  I want him to happy.

Thanks Bonus.  I will check out the web page.  We are currently obsessed with starfall.com.  He loves numebrs, letters and word and has since he is young.

Thank you everyone.  If I become a pest, let me know. I thought I had all of this worked out and had a concrete plan.  I have second guessed myself every step of the way!   I cried when they were taking his information at the school district.  I am a Rock, huh?  Lord help me when I get the RX.

I may need advise on ulcer medication before long.

 

 

 

OK.  I will try to be concise.  I have been reading/devouring everything I can on autism.  The studies, the articles, the “controversial” treatments but most especially the information you folks provide on these boards. (Might I mention that this board presents all of controversies, without heated arguments which is why I have lurked for so long).  Being a nursing school drop out, I have no authority on any of this.  I understand the “spectrum” issue.  I understand that children present differently and have various skills and struggles.  However, it seems that everyone puts the causes of autism down to one thing or another.  Genetic or Not Genetic.  Also, since it is a spectrum, I am not sure if something works well for one, will it benefit another? 

Here is my problem.  Between my husband and my genetics, we are an autoimmune nightmare.  My eldest son (13), had many sensory issues as well as speech issues.  He did not speak until he was close to turning 4. I held him back in kindergarten, to the dismay of his teachers, as I believed he was socially inept. His sensory issues peaked around 8 and have disappeared altogether.  He continues to have organizational difficulties but seems to have mastered the majority of problems.  He does very well academically (History is his favorite; he has the itinerary of the early explorers memorized and gave me a re-cap of revolutionary war the other night that went on for 20 minutes).  He is quite shy, but has made some great friendships in the last few years.  He was never diagnosed with autism, sensory issues, etc.

 

Fast forward to 2004.  Liam comes along and is progressing well.  Hit all his milestones on time.  Babbled.  Began saying words.  13 days after his MMR shot (at 18 months) he developed a high fever, all over body rash and an ear infection.  Ended up in the ER and was told it was something “in the air”.  Prescribed antibiotic and went home.  Followed up with the ped a week later.  Within 2 weeks, Liam developed stomach issues.  Very loose stools 2 times daily. Holding his stomach and crying.  His head was constantly congested and he always had a runny nose.  Stopped speaking, and basically sat in the corner and drooled.  He began to become enamored with spinning things.  He just checked out of our world, to be perfectly honest.  Ped was of no assistance.  He said it was a stage and boys “bloomed” later. He also told me to stop spending so much time on the internet.  I had no idea what he was talking about.  That is when I did a Google search and found this wonderful board.  I have since implemented the GFCF diet (thank you Shelly!).  It had a tremendous effect on his intestinal health as well as his mood.  I implemented PECs in the home (thanks tyzoa!).  His communication has improved.   His eye contact has increased and he now seeks out the company of others.  He still has minor stims.  I have, as many of you may have read, called my district for and assessment (thanks to everyone on this board!). His assessment is scheduled for July 25th.  I anticipate speech therapy will begin.  Once I get that completed, I will be following up with a specialist for a diagnosis, if necessary.

 

Here is my question (if you made it this far)….is there anyone on this board who has had similar experiences?  Everyone here seems to know where their “bucket” is.  I can’t find mine.  I am trying to make the best decisions I can, but I have found there is no map for this?  It seems to me that my children are genetically pre-disposed to autism, however I am beginning to believe that the shots had a major impact on my little man, which magnified his tendencies that were already there.  I am not planning on lawsuit and I am not trying to start a debate.  I am simply lost in the world of autism and can’t find my way out.  What do I do? What is next?  SOS.  SOS.

 

PS.  I just read this post.  Concise was my goal and I didn’t come close.  I am sorry.

Well, you're enrolled in special education and you've found a dietary change that has produced noticable benefits - that's enough for now :).  I would stop reading the many, very parisan views on autism (the partisans on either side will leave you confused and possibly angry, and you'll waste a lot of time and still find no certain truths) and focus more on your child and what you know about him and, perhaps, find a very good child neurologist of some such (perhaps call the local ausitms society for recommendation for who the local 'go to' autism medical person is) to talk about some of the stuff that you are currently obsessing about.

Welcome to the board.  You'll have much to think about pending the results of the assessments. 

fred39269.3791782407

He should do very well on the diet for it is his exact symtoms that the GFCF diet was made for and those kids do dramatic on it:)

    I feel so sad he had such horrible experiences with MMR and heard similar stories many times...it makes me sick to think that some kids who went though what your son did could of been prevented:( 

He sounds as if he is doing well ...you really need to get him a full evaluation with a Developmental pediatrician..I would get your eldest son evaluated too...many kids on spectrum have other issues like ADHD,OCD and anxiety..ect.. and also look into ABA therapy..it saved my daughter and brought her from a nonspeaking child in her own world fully engaged in ours:)

Best of luck! Keep us posted!

regardless of what "caused' the change you now need to treat it. try not to
obsess on that part of it and focus on what you can do to make liam
better. i am happy with our medical team: a developmental pediatrican,
pediatric neurologist, and a neuropsychologist. in time i will add a family
therapist as my other children get older and need to learn to function as a
special needs family.

get qualified for all the services that are available in your area and then
add on to them! unless you live in one of those states that actually
provide everything you need.

your speech therapist should have lots of experience with ASD children
otherwise you will be going nowhere! even if you want to do non-
traditional things i would still pound him with ABA therapy. as much as
you can. for us finding the right company to use was difficult. i found that
speaking with a professor from the psych department at the college in
our area was a great help. she does lots of research in ABA and autism
and knows the people in our community. she also runs her own private
practice in addition to her scholarly duties. contact your psych
department (even if it is a comm. college) and ask the head of the
department who you should speak with. i have found they are always
willing to help.

there are some good websites for creating social stories and picture cards
for kids. remember autistic children are visual learners so always have
pictures on hand. www.do2learn.com is one of my favorite sites!

pm people and ask for their personal experiences and how step by step
they got things done. you do not have to reinvent the wheel. assessment
for your child and services available in your area can be the toughest part
and time consuming but it is worth it. once you know what is available
determining what is right for your son and your family will be a tough
decision and remember you will make mistakes. it is a learning process
and it's o.k., just learn from them, remedy them, and move on. within 2
weeks of starting a home ABA program for the summer i fired one of the
therapists. i am a wimp and it made me sick to my stomach to get on the
phone but i told myself i was doing this to save my son's life! that gives
me strength to do what i hate doing. i am an introvert by nature so all of
this is hard for me!

well my reply was far from concise :) hope this helps some

L

Welcome to the board- we may not all always agree on things, but we are here to support each other for sure! My son started showing spinning, stimming, loss off speech, acting deaf, not responding to his name or loud noises, etc., at 13 months. It did not seem to be overnight but more of a gradual thing between 12-13 months. He did not get his MMR shot until he was 18 months- I waited as long as I wanted to per my pediatrician after discussing my concerns with her.

I KNOW my son did not get his from his shots......many parents believe different. In my opinion, take it as it is- my opinion, it is genetic and environmental. NO one knows what causes it, and we shouldn't feel guilty for the what ifs- they will drive us crazy! Talk to your pediatrician, try to decide what avenues to take, get on here a lot, reach out for support as the diagnoses itself can be crippling.

We can just move forward from today and make the best out of a bad situation. We are doing ABA 4 hours a week, early childhood intervention (speech and OT) 2 days a week, mother's day out (pre-school with NT children) 2 days a week, and having fun at grandma's the rest of the week. He has a full plate at 2.5 years, and I try to make time for him to be a kid. We are not doing GFCF diet at this time- his diet is very restricted by what little he will eat, so it doesn't work for us. We are doing the "tried and true" therapies and having great success. He was diagnosed at 16 months, and now at 30 months is a different child.

Feel free to PM me if you have questions or need support- best wishes! 

I know how you feel.  We just got a diagnosis in May and first had suspicions of an ASD in April, so it's pretty new to us, too. 
I've made treatment plans several times then second guessed them several times until now I think I've finally figured out what I want to do. 

I don't know how it works in your state, but here in our district (in texas) it's better to get your diagnosis before you get your school district evaluation.  We had our school eval first and they said he only qualified for Speech therapy.  But they said that if we get a diagnosis of ASD they would then have him evaluated by the school psychologist, then he could go in the Special Ed preschool class.  But since we couldn't get our diagnosis until May 17th, it was too late in the school year to do anything more with the school district.  We'll have to wait until school starts to find out if he can go in the Special Ed class (not sure I want to put him in there, though).

Regarding the cause of autism, I have no idea what caused my son's.  I didn't notice anything related to his shots.  He never had any noticeable reactions at all, I don't think he even had fevers.  But the list of shots he's received is a mile long.  I don't plan to give him anymore, now that I know he has ASD, however.    He was born addicted to cocaine due to his birthmother's use (we got him at birth through foster care), so I don't know if that contributed, but it seems that it could have.  I am very interested in the Mercury/MMR theory of Autism, but haven't really had enough time to read up on it much, since I spend most of my time on studying therapies.

I recently found a book that had a good perspective on educational therapies that I hadn't seen in the other books I've read.  It's called "Targeting Autism" by Shirley Cohen (get the updated 2002 edition).  It had a chapter I found very helpful called "Is Lovaas the Only Game in Town?".

HTH

Marilyn
mom of Jay (age 3, pdd-nos), plus 3 NT kids.

Welcome!  I'm glad that you've benefitted from these boards, as have I and many others!

We all learn as we go.  I'm a family doc turned SAHM who learned next to nothing about autism in Med School (Class of 1989).  Looking back NOW, my son was "different" from the first week.  No one in the family said it until I told them we were referred at 18 months for developmental delay.  Since then I have had (all separately and in private) my Mom, sister, mother-in-law, and a close friend who is an MA all tell me that they noticed something that they couldn't pinpoint from the get-go.  No one wanted to say anything to me, the doctor, and my husband was in denial until last summer, so...But now we all agree that it's autism.  The neurodevelopmental guy said ASD at age 2 and the Developmental Ped said Classic Autism at age 4...And so it goes.

One day at a time!  Enjoy your children!  Blessings!

Welcome YepperBepper,

Bumping for this thread.... so that others who may not have read your thread can respond & help you even further... 
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