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berryblondeboys
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19 Mar 2009, 1:04 pm

I'm sure you're all tired of new people coming in and asking questions, but while I wait for an evaluation, I'm beginning to get in a funk and I'm losing sleep.

I'm newbie and over the last few months I've done a lot of the evaluation/quizzes and reading and all I get is more questions, more worries and more confused. It doesn't help that my husband and I see it differently and 'score' him differently.

Last year, on his 3 year ped. appt I mentioned my worries to my veteran pediatrician and he didn't think there was a problem since he's social with good eye contact and good vocabulary. And... I started to feel better because with so much of my worries, it just seems more of a delay than a 'lack of ever getting there'. But at this point, it's becoming more and more obvious to me.

In November, through a friend's rec. I got my son in line for an eval within our school system. That appt. is for May - it's child find - of which I've heard good and bad things, but it is free, it is a start and it might be necessary no matter what.

Then, in a month my son turns 4 and when we go to the doctor's office I will get a psychiatrist's rec/referral who does evals for autism spectrum disorders.

I suspect it's Asperger's or PPD-NOS. These are the things we notice - some we didn't even know were 'issues' until doing some of those online tests.

1. flapping when excited.
2. monotone voice (not always though)
3. some pronunciation problems with letters (though I've been working on these and they are nearly gone) (y and l especially)
4. fear of trying anything new - new food, new potty routine.
5. No real conversation - sometimes he responds inappropriately, sometimes looks blankly, sometimes correctly.
6. repeats lines from TV and books - he talks nonstop, but not 'free talk'
7. doesn't play with toys in a normal way - puzzles, he looks and holds pieces.
8. obsessed with numbers and letters
9. Terrible fear (now nearly gone) of haircuts and hair washing and loud noises - haven't tried the dentist yet.
10. sleep problems run the gamut though FINALLY getting more normal
11. slow to walk (17 mos), still can't peddle tricycle (he'll be 4 in a month)

And I'm sure there's more.

Things that are 'typical' (which seems ridiculous to say since I don't think there is a typical!) problems with Autism spectrum disorders that he doesn't seem to share:

1. He's very social. If we go to the park and there's no other kids, he mopes around. If kids are there, he's all excited and runs and chases and plays hide and seek (though never has 'conversations' with these friends).
2. He has very good eye contact and loves to be touched (too much actually)
3. Very keenly aware of people's moods and feelings - again super aware
4. very verbal - first words at 10 mos. Full sentences at 1 year. Large vocabulary and while he repeats a lot of lines from TV/books, he can 'transfer' that to other things.
5. If I ask him things that don't require 'conversation' he'll respond appropriately. Like "Are you happy?" Yes., "Do you want more to eat?" Yes. "What would you like to eat?" Um - how about some crackers.
6. He understands humor and tries to make jokes (mainly by repeating one he heard but he understands it's funny because it doesn't 'fit')
7. Incredible memory


And again, I'm sure there's more.

I find myself incredibly sad that this sweet little boy (and he is very sweet and affectionate) is 'lost' in other ways. It worries me about his future and I'm scared for him.

And lastly, before we had him I just had this fear of autism. I have several friends who have kids with autism and it was a cross I didn't want to have to bear. I remember when we got the amnio results back I thought, "OK... but we still don't know if he will have autism." And that is just this fear in the back of my head that I feared it would happen... like foreshadowing even though we don't know of anyone who has it in the family (though now I suspect).

Does this all sound like a form of autism? What should I ask my doctor next month? He did mention a clinic last year, but there has to be more than ONE resource in all of the DC area.

And will he ever 'converse'? Like, does it just develop late? Oh, as far as intelligence goes - we think his IQ is high. He learns very fast, has amazing retention and comes from a family of pretty smart people.

I have so many questions.



GreatCeleryStalk
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19 Mar 2009, 1:46 pm

Hm. I have NLD and I was kind of like that as a child.



DW_a_mom
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19 Mar 2009, 2:00 pm

Honestly, he could simply be a perfectly normal preschooler. My NT daughter shared many of those traits, and we are really secure that she is NT. But, then again, my AS son also shared many of those traits ...

Personally, I think you can drive yourself nuts trying to diagnos any high functioning variation of the spectrum in a child so young. Classic autism shows up by then, but not always Aspergers or PDD-NOS. My son wasn't diagnosed until he was 7. And there isn't the strong need for the early diagnosis at the higher ends, anyway - your child is already busy acquiring the most essential life skills, and isn't yet confronting the things that cause AS children the most problems (that will start in K). If you are worried, do have a professional do an evaluation, but STOP WORRYING and stop looking for every little sign. There really isn't any point to it.

What EVERY child needs at his age, spectrum or not, is to develop at his own pace and to be allowed to be who he is. Get to know your child and adapt his world so his needs are met. Give him structure. Give him love. ASD or not, these are the things that your child needs most right now. When you do that, ASD or not, you will have given the best foundation possible for moving on as he gets older and things become more obvious.

If there was a good chance your child could never be independent, you would KNOW by now. Really KNOW; not just be worried. So it isn't that; if he is on the spectrum, he's high functioning, and his future is very bright, even if it may take a little more education and effort on your part. Nothing in there that warrants worry; just possibly awareness.

In the past 10 years autism awareness has gone way up, but so has fear, and the fear is out of proportion to the issue. You need to let go of that fear; it doesn't do you or your child any good. If he is AS, there is time to find out and get him what he will need. Plenty of time. Relax. Enjoy your little one - this time will be gone far too soon and you won't be able to get it back.


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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


berryblondeboys
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19 Mar 2009, 2:15 pm

Actually - thank you... For the longest time, that's what i did... not worry, but then friends of mine whose kids do have autism and aspergers told me I need to start things AsAP and timing is so important and then I felt like a bad parent for just letting things be.

I mean... I WORK with him, but like I would with any child. Like, about 2 months ago he still said, " 'j' as i the sound in jump for every 'y' sound as in you - so he would say jew instead of you... was kind of cute actually. He would say "thank a jew" when trying to say "thank you". So, I would repeat it correctly, he would watch my mouth and very quickly he switched to the true 'y' sound. I'm doing that now with changing his 'l' sounds which he vocalizes as 'w'. So instead of hello he says hey-wo. I did't feel the need to run out and get him into speech therapy.

I guess I started to worry when I would see all these 3 year olds CONVERSING and I realized more than ever he doesn't converse at all.

And I completely agree that fear has taken over - completely. I have a son who is TRULY ADHD, but we didn't get the diagnosis until he was nearly 11 because we felt that every kid who was active just got the label and we were fighting that... turns out after extensive testing, he's off the charts ADHD and now is doing GREAT with medication... I kind of bang my head for waiting so long. We had put in all the behavioral stuff before - routines, organization, writing things down, eye contact and so on, but it took the meds to put it all together (with the behavioral stuff we were already doing).

I'm a pretty educated woman and I have to wonder - is this increase of dianosis just classifying what used to be just what was considered a little 'odd' as now a disorder? And is it a disorder if they can function in society?

My older son's best friend has Aspergers. She's also a straight A student, EXTREMELY intelligent and while she's different, I would never say I felt she had a disorder... maybe she can't related to other kids as much (when she as diagnosed) because her intelligence was so high?

Ok... I'm going to try to not worry, but I still think he should be evaluated to see how we can help him.



LivingOutsideTheBox
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19 Mar 2009, 2:31 pm

Well being socially clumsy does NOT have to make you introverted per sé.
I for one, have always been a VERY engaging, social kid. I just sucked at actual contact, but I craved AND loved it.

You'll never really get an aversion to people if you love them in your heart.

And by my teen years I've pretty much learned to read people the way others read math: "Put in X, Y comes out, and that's fun for us both, or Z comes out, but then they're sad." I highly doubt that anyone can actually "hyper-adapt" to that kinda stuff, but I was born into a cult as a kid so I didn't socialize overmuch : )

Mind you though, I tend to actually REALIZE the way I analyze people.

If you want to know anyway, I might suggest asking questions about the factors that make him react: "Why did you ...xxx" If the response is: "Because xxx was sad" then that's pretty normal, but if it's: "Because xxx had fallen down, was screaming, and, and, and..etc" Intuition V Induction.

Also, you really are doing pretty well, apparently.

And if you're gonna have him evaluated, I'd suggest getting a quality...analyst. Not one who says: "Oh, he's looking into my eyes, he's normal, scat, gimme my three-fiddy..thousand"


The best to you and your family.



momofaspiex2
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19 Mar 2009, 6:14 pm

Hello,

I am new to this board too, but I have known that my son has had Asperger's for a while now. My son's motor skills were significantly delayed but if it weren't for that, we wouldn't have discovered the issues so early. Reading your post...I can identify with where you are right now. Even if he does not have an ASD diagnosis, it sounds like he is developing atypically in some ways and that you want to help him. Do not kick yourself or feel guilty. He is lucky to have you...it sounds like you really want to help him and you are putting together the resources to be able to do this. I don't believe in the whole wait and see approach so I think it is great that you are taking action now. It is still very early and there are so many things you can do to help your son's development.

I remember when I noticed that my son could not have conversations and how it made me feel. He is now 6 and is a lot better at it. He struggles at times but he can definitely hold a conversation and there was a time where you would ask him a question and response would be "circle" or "light". Have you heard of Stanley Greenspan? He has some great books on how to help your child with circles of communication. He is a psychologist and his books are popular. If you have never heard of this, it might be worth checking out. He has this whole approach called "floortime" and it makes a lot of sense. Google it and you will find lots of information.

You are lucky that your older child's best friend has Asperger's and that you have friends with kids on the Spectrum to give you advice. Lean on those people for help. I have found parents to be the best resources.

Regarding your husband and how your views differ. I have learned that this whole process impacts a dad entirely differently than it impacts moms. It can put a huge amount of stress on a marriage so I would recommend getting help now before it becomes a huge problem in your relationship. Your son may end up with no disability, but it sounds like you need to figure things out and you need support from your husband. It is important that you both can see things through eachother's eyes as best as possible. This is very complicated.

It sounds like your son has some HUGE strengths. I know it is hard to celebrate them completely when you also see all of the issues. But those strengths will help him conquer some of the challenges. Because you seem so aware of his strengths and challenges, I get the feeling that you will be able to help him with this. I am struck by how much you know about this and don't even have a diagnosis.

If I have been helpful to you at all and you are interested, please feel free to email me privately and I will try to share more info with you.



javabuz
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19 Mar 2009, 7:49 pm

I live in Virginia...I grew up in NoVA (springfield) I live in Blacksburg now, but have many friends still up there. Start here:

http://www.poac-nova.org/

Its the NoVa chapter of Parents of Autistic Children. I am sure they can point you to some good doctors and resources. Parents in the trenches usually know way more about this than the average general doctor or pediatrician



malya2006
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20 Mar 2009, 12:19 am

hi berryblondeboys

it sounds like your suspicions of asd is on target. there are a lot of myths about autism. for instance, my son loves to play with other children too, i thought that kids with asd does not like to socialize but they do, it's just that they don't know how. they're not sure what to say or what to do or how to play with other children. my son is also very affectionate, he loves to be hugged and kissed, not wanting affection is also another myth. another myth is that they don't have a sense of humor. my son is constantly telling jokes, of course he's the only one laughing at them lol. my son isn't keenly aware of other people's feelings but he has no problem knowing when im upset, of course my voice is raised or when im sad, ill usually be crying. he is also empathic to his little sister, if she is upset or crying because she wants a toy, he'll get mad at me and say "but she wants it!!" and tries to stick up for her. however, anyone outside of our family, he would not care or notice if they are upset or mad. everything you have listed as red flags for your son is the same qualities my son has, especially the non-conversational monotone speech, scripting from movies and tv, obsession with numbers and letters, and fear or new foods and toilet training. the only thing different was that he walked on time and rode a bike easily, however has fine motor delays and had a hard time coordinating two sides of his body, for instance to jump with both feet at the same time. and he's not a great dancer lol. my point is there are a lot of myths with asd. your best bet is to get his evaluated asap so he can get his services like occupational therapy, because he sounds like he has some sensory issues when you said he had fear of hair cuts and loud noises and also fear of trying new foods can be a sensory problem because he does like the taste or texture. speech therapy will also him him with the pronounciation, monotone voice and conversational piece. my son was dxed with pdd-nos by a dev ped/child neuro and dxed with aspergers by a child psychologist. they can't agree, go figure

1. flapping when excited.
2. monotone voice (not always though)
3. some pronunciation problems with letters (though I've been working on these and they are nearly gone) (y and l especially)
4. fear of trying anything new - new food, new potty routine.
5. No real conversation - sometimes he responds inappropriately, sometimes looks blankly, sometimes correctly.
6. repeats lines from TV and books - he talks nonstop, but not 'free talk'
7. doesn't play with toys in a normal way - puzzles, he looks and holds pieces.
8. obsessed with numbers and letters
9. Terrible fear (now nearly gone) of haircuts and hair washing and loud noises - haven't tried the dentist yet.
10. sleep problems run the gamut though FINALLY getting more normal
11. slow to walk (17 mos), still can't peddle tricycle (he'll be 4 in a month)

And I'm sure there's more.

Things that are 'typical' (which seems ridiculous to say since I don't think there is a typical!) problems with Autism spectrum disorders that he doesn't seem to share:

1. He's very social. If we go to the park and there's no other kids, he mopes around. If kids are there, he's all excited and runs and chases and plays hide and seek (though never has 'conversations' with these friends).
2. He has very good eye contact and loves to be touched (too much actually)
3. Very keenly aware of people's moods and feelings - again super aware
4. very verbal - first words at 10 mos. Full sentences at 1 year. Large vocabulary and while he repeats a lot of lines from TV/books, he can 'transfer' that to other things.
5. If I ask him things that don't require 'conversation' he'll respond appropriately. Like "Are you happy?" Yes., "Do you want more to eat?" Yes. "What would you like to eat?" Um - how about some crackers.
6. He understands humor and tries to make jokes (mainly by repeating one he heard but he understands it's funny because it doesn't 'fit')
7. Incredible memory



berryblondeboys
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20 Mar 2009, 10:06 am

malya2006 wrote:
hi berryblondeboys

it sounds like your suspicions of asd is on target. there are a lot of myths about autism. for instance, my son loves to play with other children too, i thought that kids with asd does not like to socialize but they do, it's just that they don't know how. they're not sure what to say or what to do or how to play with other children. my son is also very affectionate, he loves to be hugged and kissed, not wanting affection is also another myth. another myth is that they don't have a sense of humor. my son is constantly telling jokes, of course he's the only one laughing at them lol. my son isn't keenly aware of other people's feelings but he has no problem knowing when im upset, of course my voice is raised or when im sad, ill usually be crying. he is also empathic to his little sister, if she is upset or crying because she wants a toy, he'll get mad at me and say "but she wants it!!" and tries to stick up for her. however, anyone outside of our family, he would not care or notice if they are upset or mad. everything you have listed as red flags for your son is the same qualities my son has, especially the non-conversational monotone speech, scripting from movies and tv, obsession with numbers and letters, and fear or new foods and toilet training. the only thing different was that he walked on time and rode a bike easily, however has fine motor delays and had a hard time coordinating two sides of his body, for instance to jump with both feet at the same time. and he's not a great dancer lol. my point is there are a lot of myths with asd. your best bet is to get his evaluated asap so he can get his services like occupational therapy, because he sounds like he has some sensory issues when you said he had fear of hair cuts and loud noises and also fear of trying new foods can be a sensory problem because he does like the taste or texture. speech therapy will also him him with the pronounciation, monotone voice and conversational piece. my son was dxed with pdd-nos by a dev ped/child neuro and dxed with aspergers by a child psychologist. they can't agree, go figure


This does sound a lot like my son. I really wish I understood it more and even though I didn't DO anything to make him this way, I still feel it's my fault somehow.

I just really worry about his future - he's so cute (seriously, he's a cute kid). and so sweet and so loving that it will break my heart if he grows up feeling lonely without friends and not ever feeling he fits in (because you can see he wants to be part of it all).



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20 Mar 2009, 12:35 pm

My son is a lot like your child. He is also very affectionate, would rather be with his friends that with me, he hugs a lot but hates kisses. He has empathy in that he is the first one there when a child is crying and is extremely in tune with me and when I'm upset. He doesn't understand however, that his behaviors affect others. He understands that getting hit hurts, but doesn't really understand that when he hits someone it hurts them too. It's a tough connection for him to make.

He also didn't speak at all until he was 3 years old, however he is talking now. I did have a lot of issues that you have, such as potty issues, quoting cartoons, still doesn't ride a bike etc etc. My son has PDD-NOS.

I sent you a PM because I live near you. Please feel free to respond. I can give you a lot of information that is specific to this area. and most of all

Don't beat yourself up!! !! !! ! You are addressing it now, this is not your fault, and your child is still young. He WILL be fine. He will just have a different way of getting through childhood. With your help he can do it. There are a lot of things you can do for anxiety, language, motor skills, socialization. I have the same fears you have, especially with fitting in since his desire to be social is so strong, but there are things you can do to help him with that.

You will be fine! and so will your son!



DW_a_mom
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20 Mar 2009, 1:40 pm

berryblondeboys wrote:

I just really worry about his future - he's so cute (seriously, he's a cute kid). and so sweet and so loving that it will break my heart if he grows up feeling lonely without friends and not ever feeling he fits in (because you can see he wants to be part of it all).


I don't want to be falsely cheerful, but I honestly believe that fear is non-productive and out of place. You'll do what every good parent does: help your child meet each challange as it comes up, help him excel using his gifts, and help him learn to adapt for his weaknesses.

My son is 12 and he has friends. Not many, but enough, and definitely enough for him. He has always been very outgoing and social, just not very skilled at it, and always done much better with adults than children, since adults appreciate his precosciousness and think his confidence that he is right is cute. At the same time, however, he needs more downtime than other children his age, so the number of playdates he likes to have isn't that large.

As parents, we've played it all by ear, really. Encouraged friendships that seem positive, given him opportuntities to connect with new children, etc. Through school he gets social instruction as part of speech. Most peolpe have NO CLUE he is on the spectrum, they simply find him a little different, but in an interesting way.

He played soccer for 6 years, with last fall being his last season, always on a team coached by a friend's dad. He had a lot of fun with it, but he has reached the limit of playing just to play, without worrying about being overly competitive, and it was a nice social opportunity for him.

He got involved in Boy Scouts starting in 4th grade and many families find Boy Scouts to be a very good fit for their AS children. It's very tangible, what to do and how to advance, and that appeals to my son. And it is a social activity, where bonds are built.

Probably the one thing that did my son the most good without us ever really thinking much about it was a carpool. My son takes religion class once a week after school, and we immediately looked around for another family to help with driving. Starting midway through first grade we took on driving from school to religion class for both boys every week. Since there was an extra half hour to kill, I brough a small picnic every week. At first, the boys didn't know each other at all. Over time, even though they are very different, they became fast friends. This other child, it turns out, is now one of the most popular boys in school. Smart, social, and someone who thinks a lot of my AS child. I've observed over the years how he gently nudges my son on certain social behaviors and its truly a gift. He also defends my son to other kids, and talks up his gifts. Another mom I know told me car pooling did something similar for one of her children. Never underestimate the power of circumstance!

And then there are the gifts. My son's thing is inventing games. At first it always some sort of thing that made me want to roll my eyes, it was always so far out there. But over time he started to listen. We taught the concepts of beta testing and listening to the market. And so on. By fourth grade he was coming up with games that other kids found fun, and were willing to play. By fifth grade, he had a group of younger kids who became like groupies, eagerly beta-testing all his games when he went to aftercare twice a week. He actually finds those kids annoying, lol, but I love seeing them fawn over him :) It all gives him something to hold onto when things aren't going well: he KNOWS he has a gift that others don't, and that gains him respect.

Sixth grade and a new school has been more difficult, as his reputation needed to be rebuilt, but lucky him, he recently had a math homework assignment that involved inventing a game. He had a horrible time with the team he was assigned, no surprise there, but the teacher gave him permission to be a team of 1. When he brought the finished product to class he blew them all away, and his original team apologized for not following through on his original idea.

And so it goes. Challenges and victories.

It's not like NT kids get a free pass in the social world. My daughter is NT and little girls are, simply put, mean. I spend just as much time helping her navigate as I do my son.

My son's biggest challenge has been a co-morbid, which involves writing and spelling, and this still creates a lot of worry and challange. But we see the road, he sees the road, and we know he'll adapt.

I have no idea how life will turn out for him, but I'm not worried. I see NT kids facing far bigger hurdles than he does, just for being born into difficult families or so forth. We accepted long ago that we would invest more time in him than most parents invest in their children - this was obvious long before we knew he was AS - and that is part of how we live life at this point. We've molded the schedule around the fact that we have a child who needs "more." It's an investment that pays off in making him stronger, more able to cope, and more of who he was meant to be.

I've had the nights I've cried my eyes out for him, when things have been difficult. And I've seen victories that have made me so very, very proud. There is not a lot of steady & average raising an AS child, but that doesn't make it horrible.

As for the practical .... writing all the above and thinking about your original post, perhaps it would be effective for you to consult with a speech therapist. Speech therapy goes far beyond how letters are said, into the pragmatics of language and how it is used effectively. My son has gained a huge amount from speech, which I would never have thought, but so it is. Even if your son is not AS (since you don't know at this point), such consultation could help you with the issues that currently concern you, while also setting up a venue for therapy if he does turn out to be AS.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


Last edited by DW_a_mom on 20 Mar 2009, 2:02 pm, edited 1 time in total.

RhondaR
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20 Mar 2009, 1:56 pm

Hmm...your son sounds a lot like my son at 4. I knew he was hard-wired a little differently, but I couldn't ever put my finger on what was going on. I just knew he was different than my daughter, and all my friends just kept saying it was because he was a boy. I suppose that's partly true, but he also has High Functioning Autism as it turns out. :)

Not everything with autism is cut and dried, which is why you see so many things that you can second guess. I did that FOR YEARS before I finally had my son evaluated. A lot of things are so subtle that I completely missed them. I mean, my son used to be so excited when we'd go to the park or to do MOMS Club events - he loved the other kids. But now that I think back on those times, he would run around and play - but not really WITH anyone even if other kids were there. He wouldn't really talk to the other kids, he'd just be there with them, if that makes sense. So, I can totally see where you're coming from because I spend a lot of my time wondering if I'm making something out of nothing too. (and like I said - my son has been diagnosed already - for 2 years now. :) ) There's a spectrum even within Aspergers and High Functioning Autism - just try and remember that. Not everyone is going to have all the classic signs, and not everyone is going to need the same amount of help - or ANY "help" per se.

I totally agree with DW_a_mom in that the fear is non productive. Just be a parent like you would for any of your kids. All kids have their own idiosyncracies, they have their own challenges, and their own successes, and you'll find the same with a child on the spectrum. Even if your child is diagnosed tomorrow with ASD of any kind, try to remember it's not a sentence to a lonely life, a horribly sad childhood and especially not a death sentence. I know that's hard to do sometimes - I have trouble with it myself - but there are so many other things out there that really ARE horrible, and yet ASD is something that makes your child who he is, and that can't be a bad thing. :)

All of that said, I'm not going to lie - there are definitely challenges. My son HATES school and always has. He has few friends and he is still learning how to ask kids over to his house, (he invited his classmate to his birthday party. His birthday isn't until July...and he asked him in February. :)) but overall he means well. I think he'll figure it out and we're trying our best to help him. Of course there are some days where I'm more positive than others - you just happened to catch me on a good day! :lol:



berryblondeboys
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20 Mar 2009, 4:31 pm

Thanks everyone for the responses. I try not to worry about the 'what ifs' and I do enjoy my son. We had 2.5 years of infertility before him and my older son was close to 9 when we finally had him. I've tried to enjoy it this time instead of rushing forward so fast because he was so long in coming and because he is just such a sweet little boy. His smile just melts my heart and his laughter and giggles are so contagious. I just adore him.

In so many ways he's like me - very polite, likes to be close to mom and sensitive. My older son is just like my husband - to the T... so I just feel I have a special bond with him and I was looking forward to that bond growing and I think that's where my sadness is really. I just hope we can keep that special connection but yet have him grow up to have a full life of his own.

I have two close friends with children with Autism. One friend's child had three chromosomes get switched around in the ends. Everything is there, but just jumbled. Their daughter will never be able to live on her own and is truly in her own world 100% of the time. Another friend has a daugther with Asperger's and you would never know it. She 'might' be considered a little odd, but I would never know. It's like both ends of the spectrum you see. It's hard to believe they are even considered the same thing.



malya2006
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21 Mar 2009, 5:23 pm

hi berryblondeboys,

you have the same worries and fears i did when i found out my son was dxed a year ago. believe me i still have those worries but it's going to get better i promise. just get him help now for the things he is struggling with. look on the bright side..we live in an age where 1 in 50 kids have asd. he's not going to be as lonely as all the statistics states. yes, a lot of asd kids grow up to be bullied or depressed but so are nt kids. when i found out i was completely devastated because, similar to yourself, i worried about his future. i always imagined him as very popular and would have a lot of girlfriends lol. when other kids talk to him rudely and he doesn't defend myself, it kills me!! but again i just try to focus on the good things for instance i pretty much know he never try drugs or alcohol because he's scared of medicine already and he hates unfamiliar tastes so that is a plus! he also has an amazing memory and is also very bright. maybe some day he can be a computer programmer or a web developer. even though i have more on my plate then other parents, i am blessed to be his mother because he has taught me so much, patience, humility, and unconditional love. in my state i have a lot of support which is great. when he was born, i knew he was different, i just thought he was over-sensitive, i always had a sick feeling in my stomach whenever i left him to go to work, like a premonition that something was about to happen. then we bought him to a dr and they dxed him and that feeling is gone, asd i can deal with. anything like a life threatening disease would kill me.



2ukenkerl
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21 Mar 2009, 9:37 pm

berryblondeboys wrote:
I'm sure you're all tired of new people coming in and asking questions, but while I wait for an evaluation, I'm beginning to get in a funk and I'm losing sleep.

I'm newbie and over the last few months I've done a lot of the evaluation/quizzes and reading and all I get is more questions, more worries and more confused. It doesn't help that my husband and I see it differently and 'score' him differently.

Last year, on his 3 year ped. appt I mentioned my worries to my veteran pediatrician and he didn't think there was a problem since he's social with good eye contact and good vocabulary. And... I started to feel better because with so much of my worries, it just seems more of a delay than a 'lack of ever getting there'. But at this point, it's becoming more and more obvious to me.


Actually, a good vocabulary is a SYMPTOM! That IS supposed to be a hallmark of AS. And there isn't anything it truly PREVENTS.

berryblondeboys wrote:
In November, through a friend's rec. I got my son in line for an eval within our school system. That appt. is for May - it's child find - of which I've heard good and bad things, but it is free, it is a start and it might be necessary no matter what.

Then, in a month my son turns 4 and when we go to the doctor's office I will get a psychiatrist's rec/referral who does evals for autism spectrum disorders.

I suspect it's Asperger's or PPD-NOS. These are the things we notice - some we didn't even know were 'issues' until doing some of those online tests.

1. flapping when excited.
2. monotone voice (not always though)
3. some pronunciation problems with letters (though I've been working on these and they are nearly gone) (y and l especially)
4. fear of trying anything new - new food, new potty routine.
5. No real conversation - sometimes he responds inappropriately, sometimes looks blankly, sometimes correctly.
6. repeats lines from TV and books - he talks nonstop, but not 'free talk'
7. doesn't play with toys in a normal way - puzzles, he looks and holds pieces.
8. obsessed with numbers and letters
9. Terrible fear (now nearly gone) of haircuts and hair washing and loud noises - haven't tried the dentist yet.
10. sleep problems run the gamut though FINALLY getting more normal
11. slow to walk (17 mos), still can't peddle tricycle (he'll be 4 in a month)


1 is ASD
2,3,5,6,7,10 are POSSIBLY ASD

4 is NOT a fear, but a DISLIKE!

As for 9? I think you are WRONG! I don't know about haircuts, but that could be because of the cut hairs. They can itich like mad, etc... almost like "angel hair". The washing is ALSO probably tactile hyper sensitivity. The loud noises almost certainly are. In any event, AGAIN ASD!

The good vocabulary brings it closer to AS.

BTW I had 2,4,6,9,10 and a good vocabulary. I started walking, talking, and reading, early. I was reading before I was 4yo.

berryblondeboys wrote:
And I'm sure there's more.

Things that are 'typical' (which seems ridiculous to say since I don't think there is a typical!) problems with Autism spectrum disorders that he doesn't seem to share:

1. He's very social. If we go to the park and there's no other kids, he mopes around. If kids are there, he's all excited and runs and chases and plays hide and seek (though never has 'conversations' with these friends).
2. He has very good eye contact and loves to be touched (too much actually)
3. Very keenly aware of people's moods and feelings - again super aware
4. very verbal - first words at 10 mos. Full sentences at 1 year. Large vocabulary and while he repeats a lot of lines from TV/books, he can 'transfer' that to other things.
5. If I ask him things that don't require 'conversation' he'll respond appropriately. Like "Are you happy?" Yes., "Do you want more to eat?" Yes. "What would you like to eat?" Um - how about some crackers.
6. He understands humor and tries to make jokes (mainly by repeating one he heard but he understands it's funny because it doesn't 'fit')
7. Incredible memory


1 is APPARENTLY a possible symptom ASD BUT, if you are looking for the typical social problems, FORGET IT! He is too young.

2 is APPARENTLY a possible symptom ASD.

3 who knows?

4 is an AS symptom.

5 means nothing really.

6 means nothing

7 can be a symptom of ASD!

I had 1,4,5,6,7

berryblondeboys wrote:
And again, I'm sure there's more.

I find myself incredibly sad that this sweet little boy (and he is very sweet and affectionate) is 'lost' in other ways. It worries me about his future and I'm scared for him.

And lastly, before we had him I just had this fear of autism. I have several friends who have kids with autism and it was a cross I didn't want to have to bear. I remember when we got the amnio results back I thought, "OK... but we still don't know if he will have autism." And that is just this fear in the back of my head that I feared it would happen... like foreshadowing even though we don't know of anyone who has it in the family (though now I suspect).


The fear of AUTISM is pretty stupid. It SOUNDS like your son will probably be diagnosed AS! So he will act "weird", have an odd set of abilities, etc.... HEY, I did! I have done OK with myself. I may not be a millionare, or married, but I am doing ok. I own a home, live by myself, and make an income several times the national average. I have a plan so I can ride things out if the get worse. I am hoping that I can ride through this depression and make back everything I lost in this depression and then some.

berryblondeboys wrote:
Does this all sound like a form of autism? What should I ask my doctor next month? He did mention a clinic last year, but there has to be more than ONE resource in all of the DC area.

And will he ever 'converse'? Like, does it just develop late? Oh, as far as intelligence goes - we think his IQ is high. He learns very fast, has amazing retention and comes from a family of pretty smart people.

I have so many questions.


You said he has a good vocabulary, so he must be communicating somewhat already! I actually "dumbed down" the words I generally use, and a LOT of people around me use BAD grammar, etc... Hopefully, MY level meets with your approval.



berryblondeboys
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23 Mar 2009, 8:45 am

Thanks everyone - I should say, he doesn't JUST repeat lines from TV/Books, but when he is amusing himself or just wanting to 'do' something with me, he usually repeats things he heard from Blues Clues or a couple other shows. The kid has been obsessed with Blues CLues since he was less than 18 months.

Interestingly too, he does sometimes pretend that he's a cat or a bulldozer, but he looks sheepish when he does it, like he knows it's not real... that he's being silly with pretending. Once in awhile he'll talk to his stuffed animals. Like, "Don't worry mousie, it's OK. I missed you so much."

The other thing he has NEVER done until this past weekend is point for something he wants. For now I tell him that I don't understand pointing and he needs to tell me what he wants. He'll point again (in a mostly aimless direction) and then I'll ask him to tell me again and about 50% of the time he'll then say what he wants - bashfully. Sometimes I ask him if he wants what I think he is point at and then he'll say, "Yes, I want to go outside".

In the past couple weeks we've noticed 'some' conversant skills too, but brief.