anyone with an autistic two year old???

Anna - posted on 05/17/2009 ( 68 moms have responded )

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my son is turning two at the end of may and in june starts assesments at our local child development centre-we have been told he has a communication problem and the assesments will give us an underlying diagnosis...autism has been mentioned to us a number of times by two pediatritians-my son babbles mum mum,yeah yeah,dada,baba,nan nan but they are not in context are said when playing with toys not directed he can say bye but thinks it means he's going out,he asks to go outside alot by pulling me by the hand and gets upset when we can't -he uses pulling by the hand to lead you to toys and the door mainly,but to the sweet cuboard at his grandads-he dosent understand what we say except for no and bye and couldn't follow basic instruction,he is now responding to his name alot more often but normally has to be shown what u want him for like shoes or drink his hearing has been tested twice and it is fine,he dosent mind kids around him but won't really join in he just wants to play with toys,eye contacts poor but not so bad with me and his dad,he has no awareness of danger sits on his baby brother not knowing its bad and just dosent really get it? he some times shakes his head but not constantly and has been known on a few occation to ear bang but again this is not everyday just now and again-i want to be sure and confident that this could really be the case-anyone with simalar stories or advice would be alot of help at this time-thanks.

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Dana - posted on 01/02/2013

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Joni Daniles: Where are u from??? i am in NJ and i have an almost 3 year old who has autism.... I have applied for DDD (Division of Developmental Disabilities) and they help with thigs like that... Also, Social Security MAY give u Medicaid for ur son to help with insurance... there are also a lot of Non-profit and groups that help people with therapy tools and such... i just got $250 worth of therapy toys/tools/books from an organization called Helping Hands! U have to REALLY research what is available in your area... See if there is an advocate(a person/parent who has been through this already) and can help u!!! Once i know where u live i may be able to help u more!! Rebmeber, that that is still YOUR son and AUTISM is just a DIAGNOSIS.... it does not describe or DEFINE him in any way!! I have stopped crying and started fighting to help him become a Perfect boy in HIS OWN way!!! :) Good Luck and God Bless!!! XOXOX

Robin - posted on 07/02/2009

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Hi Anna,
I just joined "Circle of Moms" and immediately came here as I am in the same boat. My 30 month old son was just diagnosed with Autism in May. I have been going through various stages the past 2 months with denying it to accepting it and pressing forward. My son has SO many of the symptoms mentioned on this thread. He pulls me around by the hand, babbbles, has meltdowns often out of frustration, has a very high pain tolerance, is hyper sensitive to some noises ,having his ears touched, water in face, hair cuts, nail beds touched and the list goes on...hand flapping, tip toe walking, limited eye contact with anyone other than my husband, mom and I. He also panics if we go into a store that is over-crowded and nearly hauls my shirt off from his seat in the shopping cart. He used to say more words, but it seems the last 10 months or so he has really regressed.
When I first read this thread, my heart broke a little more to see how many of these symptoms my son has, but it was also encouraging to see so many moms are working through the same thing. It seems many of you are in the early stages as well. Dominik, my son, has been diagnosed and has his first assessment but we are waiting to see the psychologist still. He will be eligible for 20 hours a week therapy in the fall which I am nervous but excited about. (Nervous because I always get that way thinking of others I dont know working with my child ) I am also really interested in learning more about if diet changes could help. I think I will request he get some testing to see if we can gain more knowledge. I will do ANYTHING that will help him, though I hate to put him on such a difficult diet if it wouldnt be beneficial.
Anyway, sorry so long...I just wanted to let you know I understand where you are all coming from and I'm here with you all. I hope through all of these we can be a support to one another. I hope the best for all of you and youre kids.

Denise - posted on 01/13/2013

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Our 2 year old was just diagnosed with autism and ALSO had a communication delay which she is working through... One thing that we heard a lot and I am sure you have too is that early intervention is really important and helps and thats what you're doing... Ella used to also sit on her sister, and push her a bit when she'd get aggrevated ( even if the source of the aggrevation wasn't Amelia).. working with her early intervention worker (a program we have where we are) we have been learning sooo much as far as strategies for helping her engage with people (because she can really take em' or leave em') and her frustrations which were coming from her not being able to communicate effectively... I wish I had better advice but am here if you ever want to chat..there are a lot of great parents on here who have given some AMAZING advice and support as well.. which is crucial too.

Desiree - posted on 05/17/2009

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Hello Anna, I have a 19 year old with autism. And I remember those early days. I would advise you to go through all your assessments to fully get a proper diagnosis. If it is found out that your Son does have autism the best thing is early intervention. There are degrees of Autism and many people living fulfilled lives. Its not a death sentence, but it is a grieving of what was expected of your children, but you learn to make new expectations and you love the child that you do have. I would love to talk more with you anytime. Please don't worry and wait for more testing.

Dana - posted on 03/24/2013

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Emily- it seems u are doing everything u possibly can to help and benefit ur child! i have a 2 yer old with Autsim also and i find it difficult at times to handle the daily fits, the hyperness, the difficulty communicating with him, his difficulty understanding ANYTHING that is asked of him, not to mention the hitting, kicking, pushing and the constant aggressive behavior he has towards his 12 year old brother and his 10 month old brother!!! This makes some days unbearable!!
But then there are the days, when u see the light in his eyes, when he uses his words appropriately and speaks like all other kids his age, where he is loving and playful, misses his baby brother if he isn't home, playing in the bath with his little brother, watching his favorite show, and backing a cake!!
my point is thee are A LOT of ups and downs with these little ones, but what more could u ask for then their very best!!
We do all therapy through early intervention and they come to the house! He was approved for SSI in 2 weeks when they said it would take 9 months!! His father is on disability also, so i understand how difficult and tight $ is!! If u are in NJ, there are a lot of free programs that provide the therapy tools that are needed!! My son just got a $250 grant for therapy toys, his daycare paid for for 5 moths, an Ipad, and i have an application in for a weighted blanket!! You have to research and if ur income is anything like mine, u are a top candidate to receive this help!! If u would like to private message me i would be glad to give u the name of the links and places to get the applications! I know that it is great to talk to people going through what u are going through! Please feel free to contact me anytime!! Take care and keep ur head up!! :)

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Amanda - posted on 06/11/2014

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My son just turned 2 in April. We decided to get him tested after his two teachers from early on brought up there censers I had already said something and then several other people have said the same thing. When I took him to the local CMH the lady we met with was very helpful and answered all of my questions. I met with his case worker on Friday. Can anyone tell me what I can expect. Also how can I make it so my 4 year old dosnt feel forgottin about during all of this?

November - posted on 03/23/2013

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I know that's right!!stay positive.Autism doesn't define.Lets break barriers!!

November - posted on 03/23/2013

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Wow that is great..I agree my daughter is 8and I remember when she was diagnosed with autism at age 4 .What a difference now and how far she came!!I still push for more goals of course....she is my life...I am always telling her i love her and how I am so proud she is my daughter.Seriusly though isn't the love we have for our children out of this world??

November - posted on 03/23/2013

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Hi my two year old son has clear signs of autism as well.Early intervention has come to my home to help...or at least to observe.Because they are not actual doctors they cannot give me the diagnosis.What hurts me the most is I just want him to go out and play without people or neighbors wandering why he is not speaking actual words...sometimes the world can be so mean &cold.We take walks...he likes to and I enjoy taking him out for walks as well.But sometimes I am scared he may have a melt down of some kind.So of course I try and play it safe.We must walk a certain way...a certain direction.Sometimes I know he wants to turn down another block or try a different way..I am going to try it...but by bringing a certain treat for him.(early intervention)gave me an idea.A lollipop.As soon as we come back home I will have to brush his teeth.Lol.

Dana - posted on 01/31/2013

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Joni- my son has more of REPETITION then actual LANGUAGE... personally i have felt that the speech therapy that he has been getting has been really helpful, also, we show him a lot of videos on the computer that are like nursery rhymes, numbers, letters, and just everyday talking and that seems to have helped also!! i also recently bought a weighted vest, which i found helpful too... they aren't expensive about $40! if u are going to try it, get the one that is a COMPRESSION weighted vest! it allows u to make it tight which helps them with their sensory issues! Also, try getting like really tight spandex tops and bottoms for under his clothes... they are in-expensive and very helpful! and unfortunately, $55,000 is OVER the amount for help!! believe it or not i believe that it is $29,000 in NJ for a family of 5!!! It's TERRIBLE!!! they do not realize how much everything costs!!!
I hope that helps!! :)

Joni - posted on 01/11/2013

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Dana,thanks for offering your help its nice to talk to other moms that have experience. Have you found any methods that help with speech?
I've. Been trying all week to get fiancal help but my husband make too much money they claim?? 53,000 yr for 5 ppl I dnt think is 2 much. Have you ever got help from act?
If you have any tips for me about diffrant ways too teach my son I would like to hear them. As I'm clueless. Lol.
I've been doing everything I know to do but would enjoy reading about how others help their children.
Thanks
Joni daniels

Joni - posted on 01/02/2013

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Dana thanks for your reply I'm from ohio.
Yes I do love my son this hasn't change anything I have known something wasn't right for about 1 1/2 yrs and I suspected autism for about 8 months before his diagnoses,but no one would listen to me dr.'s family,ect..
I love my children all the same I have 3 boys and this doesn't seperate him from the others as they all 3 have diffrant personalities anyhow.
Thank you again any advise or help would be appricated.

Joni - posted on 01/01/2013

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Hi ladies I have a son that will be 3 in march we just found out he has autism. He was diagnosed a week before x~mas its so heartbreaking and I have cried many times. Its so hard it breaks me into pieces when he just starts crying out of nowhere. I just wish I could hear the words love you too mommy!
We just started earlie intervention so hope it helps us!
No thanks to his dr we could have been a lot further but he just kept telling me he was ok. I knew something was wrong with my baby at 15-18 months when he stopped babbling.
The signs was there I just didn't know what to look for.
They don't advertise the symtoms of autism like they should if they did my little logan would have gotten help a lot sooner.
At times he is such a happy little boy!
I wish I could take this from him id give my life to make his normal!
What has helped your children to talk? I think if I could get him to talk it would help him from having so many melt downs. I have found a way to calm him down but haven't found a way to keep him from having melt down.
You mommas seem so strong. I'm not a weak person at all its almost impossiable to make me break but his condition has shattered me into a million pieces. Everyone thinks I'm dealing with it well but I hide it fairly well but I cry all the time.(shower,laying in bed,,driving and watching tv,ect.). Its so hard I try to find more help for him aba therpy, it almost impossiabe where I'm from. They want me to buy books that show me how to teach him but it totals out to almost $200.00 who can afford that. We have 2 other children one older and one younger so mmoney gets tight!
Do you guys get free health coverage to help out with these bills? They want me to do all this stuff but its costing me a lot more than I can afford out of pocket.
If you guys know of sure funding please let me know!
Thanks mommas!
Bless your children and mine too!

Dana - posted on 12/22/2012

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hi Anne, Ur son and my son are almost IDENTICAL!!! i am a mother of 3, (12,2, 9 mos) and my 2 year old is and ADHD Autistic. I really know EXACTLY what u are going through!! He has no Sense of danger, he jumps off the windowsill, thinks nothing of doing things that would be considered DANGEROUS or put FEAR into another child, he doesn't connect with other children doesn't want to play with them, He sits on his baby brother, kicks him, smacks him, takes EVERYTHING away from him, doesn't want to play with him and RARELY acknowledges him... but i REALLY do NOT think he understand that he is hurting him because they don't really know pain... most of them do not FEEL pain so therefore don't know that they are actually hurting someone!
He used to do the SAME things as ur son, pulled me by the hand for EVERYTHING he wanted because his communication was VERY limited!! Thanks to EARLY INTERVENTION, he is talking probably on the border of a 1 year old... he doesn't put more than 3 words together, but he will say, "eat" "milky", "Ni-night", "mommy" "daddy" he knows a lot more than he did! He does the same thing with going out... if u say bye, he thinks it means go out!! If he isn't in early intervention.. i suggest u calling them for an assessment! It is a terrific help!! Please feel free to contact me ANYTIME!!! Good Luck!! U are not alone!! :)

Sharlene - posted on 06/16/2012

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My eldest son thats 9 yrs old he has autism spertrum, when he was younger he had poor eye contact and also didnt start to talk until he was 4 yrs old and now he doesnt not shut up lol, little joke sorry. with alot of early interevention and I also have a 2 yr old that has GDD and she is also in early intervention in some areas showing autism with no speech and with some eye contact but not always and signs of it. Early interevention would help and other servies that your little son might get, check out local serivces in your area and check the internet too.good luck

Tara - posted on 06/15/2012

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I have a son with Moderate Autism. He has poor Eye contact. When he was 2 we had a early intervention specialist that came to our home to work with him. One of the techniques she would do, is when he wanted a toy, he must look into your eyes, even if short second, then reward him with the toy. ♥ Good luck to you. hugs.

Anna - posted on 07/06/2009

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hi tracey

thanks for the post,it's really great your son has done so well and impressive he manages his difficulties so well,is really good to know that with hard work you can acheive so much,best wishes,anna x

Tracy - posted on 07/05/2009

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Hi Anna,
My son Connor is 11 now and I can remember feeling so hurt when he was younger and couldn't understand the simple social skills all the other kids his age had but now he jokes around, rides his bike with his friends and is more or less like any other kid his age. Some days its like he is growing out of it( although i realise this isn't the case) it proves that it does get much easier as they get older. He even knows that he flaps when he is worried so he will go to the bathroon to do this if his friends are in the house so they don't see it, he does tell some of his close friends but that is up to him if he does or not and the best bit is that he seems happy!!

Anna - posted on 07/04/2009

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hi kelly,

thanks for the post,it gives me great hope that things will improve over time and in a funny way something to almost look foward to that they may come a time where things are not so stressfull,i can totally relate to the developmentle delay bit as i have a yonger son and its almost like having a 8-10 month old in a two year olds body!,ellis is making little bits of progress and has coped really well in nursery although he has to have one to one,am really proud of him even though it is really tough at the moment but thankyou for giving me an insite into how much progress really can be made,i have been reading up on all the info and places to research the hospital have given and will be sure to bere in mind what you've mentioned,thank you once again,take care anna x

Kelly - posted on 07/04/2009

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hi,my son is now 4 he was haveing most of the difficulties your son is at the same age,i can totaly relate to how your feeling,my son used to flap his arms when excited,especially with bubbles!!he had no eye contact exept with me and dad,hed play alongside children but not really aknowledge them atall,he was diagnosed with autism and i felt as if my world fell apart!!but i can promis you it gets easier,my son james has come on leaps and bounds,he has excellent eye contact hes using lots of words,he plays with toys properly now and hel join in rough play with his brothers etc,theres to much to mention,but please try to keep in mind theres plenty of room for improvement and as your son grows he will improve,its like a developmental delay,with help hell catch up,find out as much as you can on autism read lots it really helps at this difficult time,i wish you well and best of luck

Anna - posted on 07/04/2009

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hi ali,

thanks for the post,were in england but will certainly ask about the things you mentioned and try and get hold of the books and film,your post really made me laugh at the end!!! thanks for all the advice,i really do try to enjoy my time with ellis(my son) it's very hard to get quality time with him because of all his appointments and commitments that are every day! pluss he has an 10 and a half month old brother and tring to divide the time is a nightmaire ellis requires one to one constantly and it seems bailey(my youngest) misses out on alot already!, i must admitt i do get emotional about the small steps ellis makes and often have a little cry in the car on the way back from picking him up from nursery when i hear he's made progress,he makes me so proud and i know in his own little way he's tring hard,it's difficult as i think nobody around me really understands those feelings,but it's nice to know somebody else experiences that sort of thing so thankyou,best of luck with everything,anna x

Anna - posted on 07/04/2009

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hi tara,

i just don't know how you cope,your post had me in tears the thought of the day he can tell me that would be just so amazing! thanks for instilling a bit of hope,wish you the best of luck with the ongoing journey,take care,anna x

Anna - posted on 07/04/2009

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hi robin

oh my gosh! so interesting to know the kids are so similar with there little traits as it seems they can differ so much even though there all linked with the same areas of difficulties,it does often seem like your so alone so was really nice to hear from you and how you are at the same stage,i too have read about the change in diet and intend on asking about if this would be benificial as they haven't indicated any change is needed as of yet,so glad the thread was of some comfort to you,this site has been a great sorce of comfort and knowledge for me.i hope the 20hr therapy goes well is good that we can get help so early to give the kids the best chance possible,you'll have to let me know how it all goes.wish you the best of luck with everything,take care,anna x

Anna - posted on 07/04/2009

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hi deirdre,

thanks for the post,i must admitt the thought of ellis(my son) not progressing enough to have at least some language is a huge concern at the mo but have heard lots of positive feedback re-early intervention so must try and look at this as a positive,i think the day he says a word in context i may not stop crying for a week with joy!!!! hope to stay in touch,take care,anna x

Anna - posted on 07/04/2009

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hey trish,

thanks for the reply it has been really informative and will deffinatly ask about eci and if this is availible for us,i think you have got the right perspective on the issue as like you say should count my blessings for all the things he is capable of.when reading your post about meltdowns i can certainly say that ellis(my son) temper/upset has got significantly worse as he has got older it is really hard to know what the best method is when he gets into a state but hoping now he's been diagnosed we will get help with that sort of thing,best of luck to you and your family,keep in touch, anna x

Ali - posted on 07/04/2009

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Hi! I have a beautiful 7 year old boy who was diagnoised at the moderate to severe end of the spectrum at 3years 3 months. Where i live early intervention is pretty swamped so speech available for him was 45mins once every 2 - 3 weeks and occupational once every 3 months as there wasn't one here at the time. In regards to his future learning i can suggest ABA - applied behavioural analysis. It is hugh in the USA but unfortunately here it is fairly pricey if you follow the recommended intensive 40hrs per week at a cost of around $40,000. Like many struggling families this is not something i personally could afford but by approaching the wonderful people at my local early intervention centre it was determined that there was enough interest by parents, care givers and professionals (i don't live in a big city, pop 50,000 but our diagnoises ratio of ASD is 100:1 which is quite high) for a trained ABA therapist to come and host a weekend seminar with a follow up one 3 weeks later for those that wished to become qualified ABA therapists. This allowed me to teach ABA to my son in my own home and in the hours that suited our family. He is the middle of 3 boys and both my husband and myself worked. I'm not sure which state you are in but Carers Respite Victoria paid for the parents of ASD children to attend the course, there is help out there but i have found that in my area you do need to ask for it!!!! Gateways is also a fantastic place for all things autistic and if you ever have the chance there is a lady called Wendy Lawson who is fantastic advocate for ASD; she has this herself and it is fantastic to get the view first hand of the other side of this disorder. There are also books that she has written that are a great read and very insightful. There is also a beautiful movie called The Black Balloon which you may like to watch. I do know of some mothers of ASD children that didn't like this movie but it is very touching and won awards and its Australian!!!!! Yay!!!
Obviously we all want what is best for our children but i wouldn't have my son any other way. Every look (peripheral!), laugh, hug, cry is so genuine and his face lights up a room and my heart. He has the most fantastic sense of humor.
Enjoy your son and don't feel silly if you get excited about what seem to be fairly insignificant steps (the message i left on my husbands phone when my son did his first poo in the toilet still makes my cheeks burn!!!).

Tara - posted on 07/03/2009

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I have four kids and three have some form of autism. It really sounds like my youngest. If you do get a diagnosis of autism you caught it early enough to really help. My second child was the most sever she wouldn't even take my hand and lead me to anything. She learned all her first words then one day lost it all. She just screamed constantly. Now she talks your head off and she's so polite. So don't worry to much about the diagnosis. I was crushed at first but I had to be strong and before I knew it she started saying words, then sentences and now she doesn't stop talking!!! It's hard work but it's the best fealing in the world when they look right in your eyes and say I love you!

Deirdre - posted on 07/02/2009

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Don't let your peditrician put you off! I first took our son at 18 months of age because the only thing he would say was "mum mum mum" no actual words. They told me that every baby advances at different times, they aren't all the same." This doctor also knew that my baby didn't take to breast feeding and my others did...when I went back at 2 years he FINALLY decided to send him to a local center where they have evaluations on children done. And low and behold, my son was diagnosed with PDD, NOS at this 1st evaluation. Two years later we received a diagnosis of mild to moderate autism with speech delay. We saw a HUGE difference within 2 monlths of him having Occupational Therapy and Speech Therapy several times a week!! The EARLIER THE BETTER that your child is diagnosed! That's the sooner he or she may start talking like any other normal child! And let me tell ya...those are the SWEETEST words you will ever hear when they begin to talk!! I wish you all the best! My son is a very huggable and smart child...the trick is getting what they know out of them!! I hope this helps you some!!! By the way I have 2 other sisters that have children with Autism.

Good luck and take care!

Trish - posted on 07/02/2009

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ECI: Early Childhood Intervention (Government based program) - they come out to your house, your ped usually sends a referal to them. They assest your child and help with therapy sessions and help you with any problems you may be having with schools, family, etc.



MDO: Mothers Day Out



ECI was able to find us a MDO that would take our daughter when the one she was at didnt want to take her next year. I understood why...this was their first year doing this and they were not knowlegeable enough to handle her next year.



Thanks to ECI we found a school that even though they were full and had a wait list they added our daughter to the class. With out this help she would not of had a place to go. They also help with setting up a preschool interviews with the City we live in. Where my daughter will also be going to 5 days a week in the PPCD program.



As far as meltdowns are concerened. My daughter was diagnosed at 2 and I was warned about tantrums would become worse. At the time we didnt have an issue...but a few months later we sure did. As she has become older they have become worse and more frequent.



We are lucky that her Sensory Intergration Dysfunction isnt too bad...she Seeks out sensory needs. Eats lemmons, pickles, hot sauce, salty and spicy foods, sucks on ice blocks, will sit in a cold freezer right out of a bath.



She used to freak out over a sneeze, cough, any loud noise!



Other things do bother her...having her hair brushed, having her hair washed and water getting in her face, laughter and a group of loud voices. When she is having a meltdown...she does become Hyper sensitive...if you try to touch her she screams as if you put her in a pot of boiling water.



There is no real cure and no real reason why our kids become this way. I blame it on all the medication i was on when i was preg. but who knows. i just feel lucky that she is on the low end of the spectrum where she can live a some what normal life. She could be far worse so I count my blessings.

Anna - posted on 07/02/2009

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thanks trish,my son has now been diagnosed with autism last week-have heard people mention meltdowns but don't know what this intails? know this may sound thick but what does eci and mdo stand for? we will be recieving treatment from speech and lan and play specialist at our local child development centre every wed afternoon and using pecs,we also have portage home learning support for an hour a week,my son goes to a local nursery for 2 afternoons for respite he has one to one care but is doing really well-don't really know what else i could request to further his learning? so glad your daughters doing well it's nice to hear positive feedback,i understand it's a little unusual to have kids diagnosed under the age of 3 so feel really lucky we have a head start for him! think you mums that have been doing all this hard work already are amazing it just seems such a struggle some days and u need the patients of a saint!! good luck with you ongoing treatments,thanks for the reply,take care,anna x

Trish - posted on 07/01/2009

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I have a three year old little girl that was diagnosed with PDD/NOS and high functioning autism at age 2. She has many of the traits you were talking about. She is speech delayed, does not understand directions, pulls us to objects that she wants, does not respond to her name, trouble transitioning, and the list goes on.



I enrolled her into a MDO program which helped her learn more and were great re her issues. She had been in the ECI program since she was 15 months, she has been private speech therapy, physical therapy and Occupational therapy on top of therapy with ECI. She has improoved in many ways but still has some issues that will take time for us to work out and things that she will have to adjust to as she grows up.



Right now we are dealing with Meltdowns...something I hope you dont have to deal with.



Early Intervetion is the key!

Anna - posted on 06/24/2009

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hi there,have heard alot about different diets but nothing has been mention by the peds or team to us yet,will ask if they think this may be usefull for him,he is not especially skinny but is very tall for his age,thanks for your help,anna x

Anna - posted on 06/24/2009

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hi letetia,

thanks for all the advice it was really helpfull,we went for a meeting with the team assessing my son this morning and he has now been diagnosed autistic.They have got lots of plans in place for contacting outside agencies/services to assist with his needs and will continue to work with him and help support us,but i will still investigate all avenues and oppertunitys,thanks for your help,anna x

LeeAnn - posted on 06/23/2009

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I have heard a lot of different views on the diet... The geneticist that saw my daughter said that it doesn't work, but I have heard some say so. My daughter will be having an allergy test soon, and that way we will know what all she is or is not allergic to. She has had problems with milk since she was born, and had a very bad allergic reaction to soy formula. She has VCFS, which can cause calcium deficiency, so we didn't want to start taking what dairy she can tolerate away. I think once we have the test done, we will know more what we are looking at, and can then gain more info about this diet....I don't want to just try different things without knowing all I can about it, and her situation first. I have heard that it is a VERY hard diet to follow, and very expensive. My husband and I are struggling already just to pay for what we need now, and am not sure how we would be able to afford this. I am glad to hear that the diet is helping your son Tia. Good Luck everyone!

Tia - posted on 06/23/2009

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Yeah, my son was the same...incidentally, is he really thin? My son was a real bread and sandwich fiend, and when i took him off all wheat, he started talking!!! That was when he was four. I have him now on an gluten free diet, and even though he is autistic, his speech and communication is still young, he responds with words than the gibberish he used to do. Have heard other autism children are also wheat intolerant. If not sure, take off for a month.

Letetia - posted on 06/22/2009

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Hi Anna, I am a Behaivior Therapist and I work with children of Autism. I work with parents who are in your shoes everyday. Please don't get discouraged. I know, easier said than done right? "Autism" is a scary word, but because you're son is so young, there is a lot of help out there. Be there for your son and for yourself. It can and will be very stressful at times, but it will get better. Do research. Please do your research. There are lots of therapies and programs out there, but not all of them are good. Get in contact with your local Regional Centers. They provide services for children with disabilites and it is of no cost to the parents. You want to do this early to get your son a many services a possible before he turns three. At three, he will be school age and then things change a little. I know I've given you a lot of information, but its all worth it. Please feel free to ask questions. I will do my best to help in anyway I can. Take Care.

LeeAnn - posted on 06/22/2009

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Hi Anna. My daughter still watches the ceiling fan too...when she gets really anxious, or upset, she just kind of lays there, in a daze. It really calms her, and she gets very upset if you try to get her to stop before she is ready. I understand about it taking time to adjust....I first thought that she might be Autistic before her 1st birthday, after watching a Dr Phil show about it, and noticing that she had almost every single characteristic that they mentioned. My husband and I talked about it, and kind of toyed with the idea, then told his parents what we were thinking....they got mad!! They kept saying that she was fine, just a little slow, or that it was because I do everything for her...etc. She was 27 months when she was finally diagnosed. I had always heard that you couldn't have the testing done until they were 3...not the case. You can have the MCHAT exam at 18 months! It was still hard to accept, even when it seemed that everywhere I turned Autism was staring me in the face....It is a personal thing for each family....some people adjust faster. If our children were dealing with something more like diabetes, or something, it wouldn't be nearly as hard, becuase so much research and funding goes to that. It isn't right, or fair, but it seems that progress is slow. I hope that you and your family get all of the services available to you, and that your road to a diagnosis gets easier. Good Luck! LeeAnn

Anna - posted on 06/22/2009

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hi leeann,

thanks for your note,funny you say about the ceiling fan my son has always loved the one at my mother in laws he still lays and watches it for ages even now! thanks for all the advice,i think at mo we have done as much as we can and have research the condition maybe a little to much!!! we too noticed at about a year that something wasn't quite right but have had to wait for local pediatriciation apps,follow ups,hearing tests and had a 3 month waiting list for his team assesment that finish this week and a year on here we are,silly to think that i've had nearly a year to try an adjust myself to the thought of autism but still u worry about there future! i will never give up fighting for what my boy needs and anything that will help,just such a shame you have to fight for it! wish you all the best,and hope to hear from you again.

take care,

anna x

Anna - posted on 06/22/2009

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hi luanne,your little girl sound so similar to my son,we to thought lots of his little quirks were cute and even thought the hand flapping thing was waving for a while,he still dosent talk but i know by his moans and squeaks if he's happy,he's had the last of his assesments last week and we go for a meeting on weds to discuss referals to education dept,social services disability team and futher care,it's just heartbreaking! dosen't make me love him any less at all,it's just the whole familys future that is so daunting but have been told so many times that early intervention should help get things on a more even keel-as he gets older the frustration just seems to be getting so much worse and you think you know your child so well but on some days he's just so difficult to deal with and it makes you wonder if you really do understand him as well as you thought! did you have to use pecs as this has been suggested to us? i take my son to two stay and plays each week and then he goes to a playgroup 2 afternoons but has to have one to one the playgroup afternoons were done as respite care which is a great help so he gets lots of social stimulation and is slowly opening up to his one to one lady,i'm so proud of him,the world must seem a very unpridictable place!.

wish you the best of luck with everything,would be great to stay in touch seeing as the little ones are such similar ages,would be lovely to hear about her progress.

take care.

anna x

LeeAnn - posted on 06/20/2009

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I am very familiar with this. My 2 1/2 year old daughter was just diagnosed in March 2009 as being Autistic. She only said a few words, didn't respond to her name when called, but her hearing was fine. She would lay on her back and stare at the ceiling fan for hours as a baby, has poor eye contact, "ticks" that she does, repeats movements in front of her face, paces, doesn't play correctly with toys, etc. We had her in early intervention services when we noticed she was delayed around her 1st birthday. She was later enrolled in a special needs school M-F where she recieves her therapies, and sent in March to have an evaluation to see why she was so delayed. I knew in my heart that it was Autism, and pushed and pushed for a medical evaluation to see if my gut feeling was right. We also had genetic testing done, and found out that she has a chromosone deletion, called Velocardiofacial Syndrome. (This is a separate thing, but Autism is a common symptom of the disease.) I would encourage you to follow through with all the evaluations, and to not give up until you are satisfied that you have the correct answers. It is a long, often hard road, but you owe it to your child, and yourself to become educated along the way, and to exhaust all resources until you and your child are happy with the answers you get. It was hard to accept, even though I fully expected to hear that diagnosis. I was both relieved that I wasn't crazy, and that I did know my child, and that there was in fact something going on. Once I looked at her diagnosis as an opportunity to learn as much as I could, and become an advocate for her and the disease, it got a lot easier. I still have days when it is hard, and I might cry, but I stop and think of how amazing my little girl is, and how blessed I am that God chose me to be her mommy. Good Luck, and I hope that you find all the answers you seek.

Luanne - posted on 06/19/2009

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Hi Anna. I have a 2y and 4m old daughter who has autism. She was diagnosed when she was 1 y and 9m old. we had no idea at first. We went to a developmental pediatrician because we were concerned that she was not talking yet. She should have 15-20 words by then but she had none. For us, she was perfectly normal. We didn't know that flapping and walking in tiptoes are also signs. We thought it was cute. After learning of her autism, we made lots of researches and became aware of every small details that she does. I resigned from work and became a full time mom. Just be patient. Bring him to places where he can see children play. So that he can also observe the correct way of playing with toys. When you see negative behaviors, especially when he's trying to manipulate you, just ignore. They're very smart, if they know that it works, they'll do it again and again. That's it for now. Hope I was able to help. We're still blessed and lucky to learn it earlier. Early Intervention is still the best. Good luck to all of us.

Anna - posted on 05/22/2009

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hi emily-glad to hear that you seem to have so much in place as sure it will make life that bit easier,think your right speaking to others really helps when they been there themselfs! hope appointment goes well,talk soon-anna x

Heather - posted on 05/22/2009

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My eldest talked before the Autism started to affect him at about 15 to 18 months my 11yr old didnt speak till he was 5 and tell you they both make up for it now. The 5yr old speaks but is some times unaware of the context of his speach I have great faith that with help and encouragement he will get there. Its difficult to predict how well these props will work but remember when he uses the card to take it or look at it and point to the picture and say juice then your childs name ohhhh look of realisation on your face "chris ect would like some juice please" then he will naturally start to mimic you the majority of autistic children are echolalic

Emily - posted on 05/22/2009

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Thanks for the reply Anna. Because of my husband's disability and because he got it in the Army, he got medically retired and we got to keep the health insurance policy we both had when we were still in. I honestly think this insurance is the best in the US, because anything a doctor recommends is paid for, no questions asked. Thanks to this, Ryan goes to a local hospital once a week for speech therapy and occupational therapy. Once a week we also get someone from Easter Seals to come out to our home to work with him, and starting very soon, we'll also get ten hours a week where Ryan goes to Easter Seals for very structured playgroups specifically for ASD toddlers. We do qualify for Social Security for him, and I have an appointment in two weeks to get the ball rolling on that. We plan on using the money for special tools for him. He has trouble sitting still for meals and appointments, so I'm going to buy him a weighted lap blanket to remind him to stay seated. He loves oral stimulation, and his therapist found me a catalog that has vibrating mouth toys (www.integrationscatalog.com). With my husband not able to work, and me still looking for a job, this money will help us to buy things for Ryan that we just wouldn't be able to afford. My sister lives in town and is a social worker for adults with developmental disabilities, and she is more than willing to take Ryan for an evening to give my husband and me some much-needed grown-up time. Thanks to her job, she's got an endless supply of patience and many resources for us. We tried the picture cards with Ryan before, but he just threw a fit because he could see the picture of what he wanted, but didn't seem to understand that he could have what he wanted if he just showed us which card he wanted. His Easter Seals therapist is going to start trying to ease him back into using the cards, starting with her appointment with him tomorrow. Hopefully this time he'll be able to start using the cards. Starting in December, after he turns three, the local school system picks him up for five hours a day to take him to a special needs preschool. The idea is that with enough intervention, he can be made ready for a typical first grade class. I just have to say thank you for starting this thread. I don't really feel like I'm alone in this battle anymore. It really is overwhelming sometimes, and it's nice to read these stories and see that other moms are going through the same struggles I am, and to see what's working for others.

Anna - posted on 05/22/2009

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hi emily,you son sounds similar to mine in many ways,ellis can bang his head and must have such a high pain threshold as it dosent bother him,he also is more willing to interact and show affection with family but can compleatly blank people when we,re out.he also has issues with the shape sorted but can work a tv and is interested in other appliences,i belive pdd is on the spectrum i read alot about this on a site called-(early signs of autism-life 123) it explains pdd and the other disorders on the spectrum may be helpfull to have a look-am so shocked your pediatrician said it is not at all to do with autism to my knowledge pdd is a mild form of autism more often found in under 5s and that they often show autistic traits,i would agree with you that an hour a week is very poor seeing as apparently early intervention can bring them along leeps and bounds which will set the pace for how independent they can be as adults in the long run. we have been asked to work with p.e.c s(picture exchange comunication) we have chosen to use photos for this but others use symbols or ready made flash cards-showing the child the picture of juice saying the word ang giving the juice with a view to them eventually getting you the card for what they need or even saying the word-we have been asked to give rewards for success another thing we were told about by a speech and language therapist was about (speak) its about learning language through play-you coping the childs play-ie them running a train accross the floor-you have a train and copy the action-the idea is they will realise your coping and hopfully work out they can copy you and get them to eventually take the lead with the play and words-the hole process is a little more complex like a series of slow steps broken down to achive this but you could try and get some info on it! i know it sounds like alot of hard work and it is but hopefully it will make life easier for you both in time-you have so much to contend with i,m shattard constanly but you need time aswell otherwize it drives you mad-we have got a little bit of respite care coming up-our local council has funded two afternoons a week in a local playgroup who can deal with ellis and after his assesments we will see what else we can place when the respite stops,i know there are charitys about that help with funding and they are going to send a home help once a week and same as you a special needs person to work with ellis for an hour a week-you could enquire with social services about respite/funding or home help its unfair to struggle on your own-you may be able to get info from the national autistic society about those bits-they are online too! ellis like your son gets frustrated when he thinks i dont understand what he wants sometimes i do like when he drags me to the door but its not always possible to go out and he gets upset-he to has mastered most child proof devices,safety gates ect!. Was thinking if your not happy about the ped you are seeing prehapes go back to your gp and ask for a second opinion as i remember being told if i wasnt happy with the outcome you are entitled to see someone else if you feel there is an issue.I'm not sure if you can claim disability allowence for pdd but if that is the case prehapes you could use this to fund a bit of time out? I'd love to hear how you get on,wish you the best of luck!!!! will let you know if i find any other info that might help-always hear if you want to chat-take care-anna x

Emily - posted on 05/21/2009

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My son Ryan is almost two-and-a-half and he was diagnosed with PDD (Pervasive Developmental Disorder) about nine months ago. His pediatrician didn't explain the diagnosis to us and specifically said that it wasn't autism and we shouldn't worry about it, just that it meant that Ryan was delayed and needed a little early intervention. I just found out a week ago (from a poster, if you can believe that) that PDD falls on the autistic spectrum and Ryan should have been getting way more than an hour a week of intervention. Needless to say, I'm livid with the pediatrician, and as soon as I can calm down enough to talk to him rationally, I will be confronting him about this. If I do it now, I'll probably just start swearing at him though, and that won't help anyone. Ryan is extremely outgoing with his father and me, and very friendly with other adults. He'll look them in the face, but often breaks eye contact, like he can't handle it for more than a few seconds, then he'll look back. He only says about five words, and he uses them wrong half the time, like saying "no" to every question, regardless of what he wants, or saying "more" when he wakes up from a nap and wants a snack. He's never called me "Mama" or his father "Dada". He throws a fit if I try to play with him and would rather be solitary in his play. He babbles constantly, and is always trying to imitate his father and me, but refuses to cooperate in back-and-forth therapy exercises. If I try to teach him a new word, he won't mimic me like most typical toddlers will. We have about twenty or thirty tantrums a day because he can't communicate his wants and needs to us. I've tried teaching him sign language, but he only uses three or four signs consistantly. He wakes up often during the night, so is usually tired and cranky during the day. He seems to want to change his own diapers, but refuses to use the potty, so training seems like a distant dream. He plays very rough, and often hits his head on the wall or couch repeatedly. He seems to have a very high pain threshold. He's defeated most of the child-proofing devices we've tried and often just breaks his toys if he can't figure out how to use them, like his shape-sorter. He struggles with simple tasks, like the shape-sorter, but loves to group items in ways that seem beyond his age level. For example, he'll gather his sock monkeys and Curious Georges together. Both monkeys, but they look nothing alike. He's got an appointment in two weeks with a neurologist for a full neurology workup, so we'll know soon exactly what his limitations are and what he's just being stubborn about. This is difficult for me because my husband is disabled from his time in the Army. Sometimes I feel like living with both my husband and my son is too much for any one person to handle. I just keep taking it one day at a time. Any advice or ideas for me would be more than welcome!

Anna - posted on 05/21/2009

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hi heather,yes we have already been asked to start the p.e.c's and have laminated photos ellis picked the juice card out of his bag once or twice so i realise it will help but just worry about how long it will take him to talk or if he will at all,i think we will be seeing a speech and lang therapist soon,have heard about s.p.e.a.k encouraging through play to copy and take the lead-goodness knows how you manage this with 3 a card for everything is hard with one to remember each time or if your late,must take such alot of organisation!!!! thanks for the info,did your son talk at all befor p.e.c.s?- anna x

Heather - posted on 05/21/2009

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Hi I am a mum of 5, 2 of my sons 13yrs and 11yrs have Autistic spectrum disorder and 1 son aged 5yrs has an undiagnosed communication disorder. The few pieces of advice I can give you is look in to P.E.C's (picture exchange communication) its brill there is a picture for just about everything or you can do what I did and make some of your own, it helps reduce frustration through visual communication I did this along side sign language that I learnt through a local college when I got the first diagnosis. We also have a visual time table up on the wall were we put school days days out or what ever we need to. In the bathroom we have picture to sequence what is expected of them like pictures for the toilet then the flush then to wash hands stuff like that these have got less over the years as once there is a routine there they will stick to it totally. When the boys first started with the pictures they had little books hooked on there trousers to take everywhere now they are both verbal and have good life skills so I know these things work. A speech therapist helped us to start the P.E.C's and I honestly couldn't recommend it enough.

Anna - posted on 05/21/2009

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hey marci-we like you are pending a diagnosis from our local child development centre-my son ellis is two in a weeks time but unlike your little one he has never taked he just babbles mum,dada.nan,yeah but not in context he has never been a able to count-resonds to his name quite often with family but then can blank people talking to him out and about although if hes watching tv or fixed playing you generally wont get a responce,normally have to show him items like shoes befour he realises hes going out- he is a happy boy -like you i just dont know what to think for now,but what will be will be and its out of our controll which is hard,the spectrum seems to be so big and each child shows different manifestations/behaviors but all seem to have difficulties with the social side of things-there are other diagnosis that are on the spectrum like pdd,aspergers and 3 others there is a web site called( early signs of autism-life 123) it tells you about these i found ellis fits pdd well as he is not at all totally in his own world and is interested in interaction with us and his grandparents not other kids much but then i think most two year olds go off and do there own thing so its hard to tell,i shouldnt really speculate as at the end of the day whatever result the proffetionals no best and second guessing is silly,just thought if you read up on it all may make you slighltly in the no befour your app.would love to hear how you get on,best of luck,i have been really encouraged by some of the reponces on hear as its seems even if it is the case theres help out there and room for big improvement and as you said it would appear to be more common than first thought.take care-anna x

Anna - posted on 05/21/2009

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hi leighann,thanks for your reply-it sounds like your son has come such a long way- not really scared of the diagnosis just worried bout the future for all of us,ellis is two in a week,am so suprised they can diagnose so early seeing as small children change so rapidly! have seen so much literature now but still cant make my mind up weather im sure this is the right thing although prehapes its because i dont want it to be if im truthfull but i think he is on the spectrum although he is a happy boy and quite passive in nature really just gets upset when frustrated. thanks for your advice,its been helpfull-anna

Marci - posted on 05/20/2009

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Hi my name is Marci, I have a son his name is Ryder. He turned 2 January 19. Before he turned 2. He was talking, even counting to 10. It really amazed his dad and I. But, for the 6 months we have really noticed a total change in him. He will not speak for nothing now. He could say mama,daddy, gracie which is his sister's name.he would say cup,tea,milk,chips,and loved phones of any kind. and that was his fav word for a long time.I have noticed a couple of times when I have been feeding him. He would ear bang.But, really I don't know. he wouldn't be hitting his ears hard or nothing. it's really confusing. Next thursday Baby's Can't wait is coming out to work wwith him. And got a appointment for the Marcus Instutite.I just hope everything will be alright. He is still very loving though. wanting to be held alot.and my son has similar actions as what I have read. sometimes he will give eye contact and sometimes he won't.every where I look lately Austism is everywhere. Like it is trying to hit me in the face!!!!Any answers or suggestions would be great!!!Thanks,Marci

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