lost..

Carri - posted on 02/04/2011 ( 17 moms have responded )

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I dont even know where to begin!!! Brian is our first kid and is 3 years old. he has been through so much in his life and is our lil trooper.. he was 37wks gestation and born with a cleft lip (no palate issues). He had neutropenia of childhood, and also suffers from a "floppy" Trachea and a narrow upper airway.

He has always be ahead of all the other kids.. so smart!! He knows his numbers up to 50, all his letters and sounds they make, he know his shapes, and all his colors. He memorizes things like instantly! and is a walking commercial (recites a million radio/tv commercials).He is our first kid so we dont know what is normal for language development... but his pedi asked how he is with other kids... He doesn't interact much but if he tries they dont play with him.. they come to me and ask if he is a baby..this is why... He has such a HUGE vocabulary but doesn't seem to use it. He can't answer any questions, can't tell how his day was, where he wants to go... he recites books we have read and will repeat his games to us.. but if you ask do you need to go potty .. his answer is " I dont need go potty".. then you take him over to the potty and he will pee like crazy (as if he held it for ever). He is potty training right now but can't find the words to tell us he needs to go. so we set out a potty for him and explained what he needs to do. now when he needs to go pee he just runs over and pees. wont tell us he needs to go or that he went. he can't draw anything beyond a squiggle. (we never thought it was an issue.. we just thought it was normal for 3 year olds... we didn't realize he was behind and suppose to already be able to carry on conversations.) Oh and if he gets playing something he gets soo wound up in it that he won't no there is a world around him.
They are doing a speech evaluation on the 14th.. and then an Autism "test".. I am a lil worried because my husbands cousin is very much autistic.. does it run in families? does my boy sound like anyone elses kid?

If you have more questions before giving an opinion on this PLEASE ask.I am sure I may have left out one or two things (very flustered about this). I am in need of so much support after all I have been through with my lil boy!

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Theresa - posted on 02/08/2011

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Hi Carri, please don't get too upset just yet until your son is evaluated by a developmental pediatrician. He may have something more mild like expressive language disorder which also causes children to shy away from playing with others and conduct actions independently. It is good that you are addressing his problems at an early age so that you can begin work now and get him into good habits of self confidence and language building. With work and help from speech therapy you may be able to relieve the stress of the disease for him and make him comfortable before he begins attending school. I hope everything goes well for you on the 14th.

Also just out of curosity at what age did he begin speaking? I ask because I am on here because my son is 2 and only has a vocabulary of ten words at most. He understands everything we say to him but he can not express him self with words. He even has very little 'repeatative' language. This is classified as ' Expressive Language Disorder'. I am sure they will also test him for Autism as many of the symptoms are similar/ or overlap.

All the best to your family x

Sheila - posted on 02/04/2011

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Hi Carri,

My son is approaching his 7th birthday. He was diagnosed with autism at age four.

I don't know if your son will test "within" the spectrum. But, you have described an issue that is often common amongst children living with high functioning autism...that is the ability to speak but not converse. My son did not begin to truly be understood until around 3.5; however, he did not converse. He repeated, made "announcements"....I said it was like living with a sports commentator at times. He would just say something like, The couch is blue! I might then say, oh do you like blue? Then nothing. As well, he repeated what I said. He also memorized lengthy bits of dialogue from favourite tv shows...and if I read him a book that I had read before and substituted a word like big instead of reading huge, he would pipe up, HUGE! HUGE!

I also teach kindergarten. At three, most children are still scribbling...some are beginning to draw circle people (arms & legs jutting out of head) Typically, three year olds play along side each other...more respectful of personal space than a two year old, and they are beginning to "negotiate" sharing. If he is closer to four than three, than more interaction would be expected. Imaginative play is big (so putting on a construction hat and walking around with a hammer, fixing things)

Does he have any repetitive behaviours (e.g running into a chair over and over again, going up and down stairs) Does he line up toys? does he get down to carpet level to check and see if the toys are lined up perfectly? (so that his face is close to the ground and his bum is up in the air) Does he flap his hands or finger flick? How is his eye contact?

This is a scary time, but you are miles ahead. With the gift of speech comes the ability to truly communicate. At seven, my son is communicating. It can be very rigid, and highly structured at times...but he is also telling me about his day. Again, if I ask, he may or may not respond...however, he will spontaneously offer information to me now and has told me about homework assignments before I have seen them in his communication book.

I don't know where you are, but it is my understanding that your local school district is your primary area for support/services if you ar ein the US. In Ontario, Canada you first go through either a pediatric referral for testing or through Community and Social Services, preschool services..once you hit school age, it changes to the schools (not for diagnosis, but for educational support...therapies are primarily left to parents to pay for out of pocket or you go on a huge waiting list for ABA therapy).

Good luck to you...take a deep breath. Autism is not the end of the world, it's just a different world than you had expected.

Sheila

Joy - posted on 02/04/2011

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Please calm down you sound like you have a remarkable and special little boy. My son also had a difficult start in life and was diagnosed with ASD when he was 5yrs old although we knew much earlier than that that there was something different about him. We found that from a very early age it was important to accept him as he is but also work on developing some very basic social skills. Little tricks like touching his nose before speaking to him was quite cute when he was as young as your child but ensured that he made eye contact when we were talking to him. He is now 11 yrs old and has learnt through repetition that it is appropriate to look at who you are talking to. Language and communication skills were definitely v tough and frustrating to deal with - and at times still are! We found having a very strict but simple routine helped and quite boring ways of asking regular questions. Oh and having to wait what seemed like ages for a reply to anything (and I am not the worlds most patient mum). Having said this my son is the most loving of my three children, he never ceases to amaze my with his knowledge and compassionate insights into the world. He is gentle and kind and loves animal and cooking. By all means have you son tested but then please use the information to support you your husband and your little boy to find ever more interesting ways of looking at what can be a very dull world. Good luck

Christina - posted on 02/04/2011

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Hi there. Im so sorry that you and your little one have been through so much. My son is 3 and a half now. He does most of those things as well. His language is that of a two year old. Repeats the same things over and over. He isnt the most sociable but will play next to the other children and watch them. I had to go thru the speech evaluation and just last week and this week the occupational screening and developmental pediatrician. They diagnosed him in the autism spectrum. From what Ive learned so far they arent sure what causes autism but it may have to do with genes and run in families. There is a lot of info out there. Even read about how some kids have an allergy to certain foods like gluten and dairy products that can cause the symptoms of autism and with dietary change some of them stop the symptoms altogether.
My thoughts are with you. Feel free to write me anytime. Im still dealing with finding out the diagnosis...just got it on tuesday. Feels like a roller coaster ride. Trying to not cry in front of my precious baby boy.

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Diane - posted on 02/15/2011

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Hi Carri



My 5 yo son is autistic (mid) and he displays a lot of the same characteristics that you talk about. My son's comprehension of language is not very good, so although he is far from stupid, it is hard to understand what is going on when you cant understand the language. Anyway, I know it sounds trite but try not to worry until you get your diagnosis. I found that things started to improve almost immediately as even during the assessments I was given tips that helped enormously.



I cant speak for anyone else here but although I was relieved to finally get a diagnosis, I was devastated by it. It took me some time to get over it, and I found the whole thing daunting, even on how to get therapies etc. I decided to learn as much as I could, I attend seminars, read a lot, learnt the system, and feel much better. He has just started school and it is going OK, sometimes good, sometimes not so good. And even now, I sometimes still cry and worry for my little boy.



BTW, my daughter (6) was born with laryngomalacia, as well as a narrow windpipe. And I spend many a night sitting with her, rushed into hospital and a few operaionts with it. She still has the odd breathing problem and the Laryngomalacia was still there at 4 but as it was only mild after two operations, we are having no further treatment. The windpipe problem gets better as they age, as the narrowing is not as noticeable, and has lesser effect on their breathing. The one thing I found invaluable was Redipred, as it helped with the very scary stridor. So it seems you have my two kids, rolled into one. And one thing for certain, with both the throat problems and the autism, it does get better.



Best of luck to you.

Carolyn - posted on 02/15/2011

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Hi Carri
I have a 10 yr old with ADD/ODD, a 5 yr old with ASD, and a 4 year old with ADD/PDD. What is helping me is a good pediatrician, a good Behavorial pediatrician (which I had to have a referrel from the pediatrician to see him), and then Speech therapists, Occupational Therapists, and Developmental therapists. My kiddos have come leaps and bounds. I wouldn't count only on the school system (or at least where I live) because as soon as they reach the school's level of achievement--which is pretty low--they are kicked out of the system of help. (Like they can cure autism?) You have to do most of the pushing, asking, finding out what is available--
Three years ago I thought that the two younger ones would never be able to play with neighbor friends--and I am amazed at how far they have come. They play with the neighbor kids every day. (and the neighbor kids come to our house to see if they can play!!!) Love, Love, Love my new OT. She has me come in every week and I am always part of the therapy. (the last OT wouldn't even let us in the room.) You will learn a lot from these boards--these women are wonderful.

Take Care,
Carolyn

Noelle - posted on 02/09/2011

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just wanted to clarify what i said about the school district. It can be a good starting place and a place to get FREE help. I too would not leave it all to the school district, infact I teach my kids at home. but free help is nice and if you have more time (to advocate for your kid) than money or insurance for specialists, your school district can be of SOME help. I think alot of moms don't know about what the school district is required to give children when it comes to special ed services as part of the Individuals with Disabilities Education Act (IDEA). I don't know your financial situation so just wanted you to know there is some help out there even if you do not have the money to pay for it. it can be a real challenge to say the least dealing with the school district(which is why I teach my son at home) but when he was little he got free preschool and speech therapy at the preschool at our public school and it helped him tremendously. they even had a bus that picked him up and dropped him of. just wanted to suggest it so you know all your options and can get the help you need. every school district is different so you may or may not get good help where you live. either way it is a free option if you need it !

Margaret - posted on 02/09/2011

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Hi, Carri. It's very frightening when you are not sure what you're dealing with, and even when you do it's still frightening. The good news is that your boy is healthy and sounds very smart.
Yes, autism does run in families. If the testing had been as accurate twenty years ago, my brother would have been diagnosed autistic; at that point, all they really considered was ADD.
My son is 6 and has the vocabulary of about a 2 or 3 year old. And this is an improvement from what it was. He was diagnosed at age 3 as mid-to severe autistic. He is extremely good at problem-solving, very smart, very caring, but he cannot put into words what he means. School has helped him, and his vocabulary has expanded. He goes through phases: sometimes he'll say he needs to go potty, other times he won't say a word until we take him aside and check his diaper and it's full.
Socializing is also an issue for him. He wants to play with other kids, but other children tend to ignore him as he cannot talk to them. It's a heart-breaking thing, to watch your child ignored. There are some friendly kids, though, who will try to play with him, and that it wonderful.
It sounds as if your child is definitely on the spectrum. If he can't quite put to words what he needs, like our son, here is what we tried: we either found pictures or drew pictures of common items (potty, different foods, activities, things he knows) and created a poster board for him. It's a double teaching tool: my son recognizes them, so he can point to what he needs, but it also has the word, so he can recognize the word and we sound it out.
There is a neat book called "What you can do right now to help your child with autism." by Jonathon Levy. While I don't agree with everything, and some of it is contradictory to other things I've been told, it's a good tool. It gives some great, simple ideas on how to try to communicate with your child. Sometimes just sitting in the same room and watching is a great way.
Does your child have any outstanding traits--does he flop his arms, or spin in circles, or stack items obsessively? These are stims, and they are quite normal with autistic kids.
If it happens your son isn't autistic, I'm sure there are some other great tools you can utilize to work with. I hope you find the answers you need, and realize that you have plenty of support out here. It's a difficult thing to realize that your child needs special help; at least you know plenty of us share the same thing. Good luck!

Angie - posted on 02/08/2011

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I don't have much time right now to respond. I will say, contact me. I have two on the spectrum, and I have taught myself how to work with them. Leaving them to the school district is not a good idea. If you're lucky and are in a good district, that's pretty rare. Otherwise, you'll be spending more time fighting them to provide services and your son will go longer without help. Try to get services, but I can teach you how to work with him at home as well. It makes a world of difference!

Noelle - posted on 02/08/2011

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your little guy sounds just like mine did at that age. he is six and is an aspie. so is my hubby and both of his parents so yes, I think it does run in families. my boy taught himself to read at two but played next to kids not with them. he would tell us facts but could not answer a question like "how are you? " and he would play with his trains for hours by himself. he too was our first. as far as vocabullary I think that is part of the tricky thing with AS kids they know alot of words and can almost sound like little professors as they say but they have a hard tiem with what the words actually mean. that is why they can do things ;like recite commercial(my boy LOVES the "slap chop" commerical") since you boy is 3, you should be able to get testing and help for him through your local school system as part of the special education program.but you must ask for it andbe your kiddos advocate private child psychs can help you too if you have the insurance or the money. there are a ton of great books out there too. totally happy to answer any questions you may have as this AS world can be a bit overwhelming. my best to you and your little guy!

Thea - posted on 02/08/2011

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Hi, he does seem to have traits for the ASD spectrum, probably on the higher functioning side (aspergers). My advice to you is this... Take it day by day, there is a lot to learn and a lot to discount, bit by bit have a look at an aspect and take time to consider it. Everyone is different and has a different journey and a different child but the beauty of forums like this is that we share bits and pieces in common. Listen to your instincts and be prepared to critically analyse advise from evryone around you, your son will be the best indicator of what works and what doesnt. The experts say that they cannot link austim to genetics..YET! They are working on it pretty hard and they think its just a matter of time. Stay on this forum, its a wonderful place with wonderful helpful people who have experienced your current situation, there is nothing better than a room full of sisters :-)

Brenda - posted on 02/08/2011

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My son was 5 when he was diagnosed with aspergers syndrome,ADHD,OCD you name it.I didn't recognize the signs because he was my only child.His teacher noticed that he didn't move like the other children.Aspergers affects the motor skills.He didn't climb like other children and he also didn't like to color because his hands hurt.His fine and gross motor skills were affected.His vocabulary is way ahead of children his age as is his way of thinking.As far as mingling with other children he didn't understand personal space which scared them at first.My son is now 10.He has been accepted in class by his friends.He is also on medication due to the ADHD and has a teachers aide to help him along.I don't know his future but anything is possible.

Janet - posted on 02/08/2011

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bless u, u both have been through so much. autism is a massive spectrum so yr boy needs the test to see if he is on the spectrum or not, u maybe wil hear from others who have children with similar attributes but they are not on the spectrum, is there an autism support group in your area, they are in most towns and cities, go there, u wil be welcomed with open arms and offered knowledge and support and advice, they wil be yr best bet

good luck x

Jennifer - posted on 02/08/2011

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Carri - wow, my son too has neutropenia! Not a fun disease at all. He also has autism. From what you have described, it sounds to me like your child could have echolia. That is the ability to repeat but has little understanding of the words or meanings themselves. Dont panic, this is not a death sentence. If he beat neutro he can beat anything! :) With a loving mommy and catching it early, dont worry, you all will overcome! :) Speech eval is good..also please consider Occupational Theraphy eval. The handwriting delay could be a simple as a sensory processing delay that can be easily corrected with a little OT. You can learn more about that at http://incrediblehorizons.com/sensory-in...
I have 15 years of Autism knowledge crammed in my head, and neutro knoweldge too. So, if you want feel free to ask me anythin you want. :) Best of luck!

Carri - posted on 02/05/2011

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I don't know if your son will test "within" the spectrum. But, you have described an issue that is often common amongst children living with high functioning autism...that is the ability to speak but not converse. My son did not begin to truly be understood until around 3.5; however, he did not converse. He repeated, made "announcements"....I said it was like living with a sports commentator at times. He would just say something like, The couch is blue! I might then say, oh do you like blue? Then nothing. As well, he repeated what I said. He also memorized lengthy bits of dialogue from favourite tv shows...and if I read him a book that I had read before and substituted a word like big instead of reading huge, he would pipe up, HUGE! HUGE!

*****that paragraph sounds just like my Brian!******
Does he have any repetitive behaviours (e.g running into a chair over and over again, going up and down stairs) Does he line up toys? does he get down to carpet level to check and see if the toys are lined up perfectly? (so that his face is close to the ground and his bum is up in the air) Does he flap his hands or finger flick? How is his eye contact?

He definitely lines up stuff.. he will do it with even crayons.. and heaven forbid if you move one of them out of line. instead of just getting upset to things he will freak out and whine/cry like a little baby.. Also he does "windshield wipers" with his fingers. if he gets creative he will take two objects (his favorite are daddy's screw drivers) and he will slowly move them in the motion of car windshield wipers.

I have a feeling reading these posts and other in another Autism group that my son will def be tested in the spectrum..

I will keep you all posted once we get the evaluation and thank you for your support.

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