Wondering what you think?

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Registered: 03-26-2003
Wondering what you think?
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Tue, 06-22-2004 - 8:52am
My name is Jayme. I am 24 years old, living in Utah, and have two little boys. Johnathan is 3 year old, and Ethan is 8 months old.

I have some concerns about Johnathan. Here are some bits and pieces of messages I've written to different boards. Please tell me what you think?

*****

Johnathan is a very bright little boy. He has been telling us the alphabet from written form, as well as numbers 1-9 since he was 18 months old. He can now also recognize numbers 10, 11, and 12. He knows many shapes including octogons, hexagons, parallelograms, trapezoids, pentagons, crescents, etc. He is just recently picking up on colors.

Johnathan has been working steadily on potty training since last summer, and now goes all day (excluding naptime and bedtime) in underware. He rarely has a wet accident. He has recently begun telling us when he needs to go. He will pull his pants and underware down or up with a little help. We're having some trouble getting him to poop in the potty. He does not wipe himself yet. He needs help washing his hands.

He repeats things that we say to him, throws a tantrum when things change suddenly (if the change is unwelcome), likes to organize things (he will line all of his cars up, etc), he memorizes quickly, will get stuck into doing things in patterns, will become focused on one interest for a while (right now it's dinosaurs), will not open a present for anything, has to be coaxed into doing things in certain situations, and sometimes has a short attention span.

My dh (his dad) was diagnosed with ADD as a teen. I was diagnosed with OCD as a teen and SAD as an adult. My mom and I have always wondered if I, too, have ADD but I have never been diagnosed.

Johnathan was tested today for an early intervention program that offers free preschool to children that qualify as developmentally delayed. The tester mentioned that she thinks that he shows some signs of minor autism. But was baffled that he is as far as he is in potty learning. Trusting my own instinct, I don't think he is autistic, but rather has problems with ADD, OCD or SAD (or a combination), as his dad and I do.

However, my mom has mentioned that the reason that she thinks I might have ADD is because there has always seemed to be something a little "off" with me. So maybe it isn't ADD but minor autism. I still really don't think so, but am curious about what you all think, since you have some experience with it.

I am planning on doing further research on the web, and possibly talking to his doctor about it. However, I have brought up the possibility of autism with our pediatrician in the past (when my dh once mentioned concern), but she thinks it's more likely one or a combination of the disorders I mentioned above.

*****(taken from the Autism board)

*****

Johnathan was tested for early intervention preschool and speech therapy last Monday. He scored 83 in cognative language, and 81 in behavior. 85 is considered average, so he is just barely below average. However, he only scored a 65 in motor skills which has me pretty baffled. So, we will be going back in July to see if he will qualify for speech therapy and preschool. And because of his motor skills score, we already know that he qualifies for occupational therapy, and he will be doing that this fall. I'm a little concerned about him. The tester told me that he shows autistic tendancies. However, if he were to be autistic it would be a high functioning form. He is verbal, and really isn't difficult to understand. His temper tantrums aren't any worse than most other kids his age. He is doing well in potty training, with only a couple of hurdles that we haven't quite overcome. He makes eye contact and is affectionate (though he wasn't very affectionate as a baby). I have found some information on asperger's syndrome that seems to fit. However, it shares symptoms with attention deficit disorder, obsessive compulsive disorder and social anxiety disorder. Corey was diagnosed with ADD as a teen. I was diagnosed with OCD as a teen, and SAD shortly after having Johnathan. Though I have never been diagnosed, my parents and I have often wondered if I have a minor case of ADD myself. All three are hereditary, so his problem could simply be one or a combination of these. However, many AS people are originally diagnosed with one or more of the above, and are now finding out that it's actually AS. Johnathan is me in a miniature, male form. My mom has told me that she's always felt that there was something a little "off" with me (which is why we've always suspected ADD), but now after the info I have researched, we are beginning to wonder if I might have been misdiagnosed with SAD and OCD and might actually have AS. But again, there are pieces that don't fit, because according to what I've read, most AS patients never marry or have families, they rarely make eye contact, they are clumsy, and several other things that don't fit. However, it would explain a lot, why I was always the scapegoat in school, why I never cared for or got along with my peers, why I tend to focus (almost dwell) on something for a long period of time, and why it is so difficult for me to break certain habits. So now I'm beginning to wonder if Johnathan just has ADD, OCD, SAD or a combination, or whether it's really AS. And I'm wondering the same about myself.

***** (taken from the Latter-Day Saints Families board)

*****

I have Ethan's 9 month appt set up in July about two weeks after Johnathan goes for his second early intervention testing session. There is supposed to be a psychologist at that session, and hopefully he can tell us more. I'm thinking of bringing Johnathan with me to Ethan's doctor's appt and asking our pediatrician what she thinks. The thing holding me back there, though, is that she was my dh's doctor, and his sister's doctor, and is currently his brother's doctor, as well as our kids' doctor, and his sister's ds (and Carson before he passed away last year). Dh has ADD, as well as both of his siblings. She also knows about my problems. So, I'm a little concerned that she will automatically assume ADD. I'm not saying that it can't be that. Just that now that I've looked into this other, I want to be sure.

Maybe I should also mention that my dh thinks that asperger's syndrome is Mr. Asperger's way of cashing in on ADD, and that there isn't really anything to it. I can see why he might think that, but there are some pieces that just don't fit.

I mentioned that Johnathan is me all over again. Everything he does reminds me of myself. He sings to himself as he goes throughout his day. He likes to be read to. He's very interested in my piano, and I'm planning on beginning to teach him in another year or two. He's had a hard time with playing with other kids, but has always connected really well with dh's sister's little boy. And just recently, has started playing with my sibling's kids, and the kids in nursery really well too. He is very loving with his baby brother. Wants to kiss and hug him, and bring him toys, and when Ethan begins to cry for me in the mornings, Johnathan comforts him until I get there.

A little more about myself, I was the scapegoat in school and no one knew why. I taught myself how to read and write at age 4. As a child, I talked like a little adult, but we always figured that was because my siblings were so much older than me that I was just talking like the people I was around the most. I had a very hard time around my peers. I never seemed to know what to say, and still don't. I don't attempt jokes, because for some reason, when I tell them, they are never funny. Even if I am telling the very same joke someone else told that was thought to be funny. I am usually the last person to figure out the punchline of jokes too. I have had people tell me several times that I have said something with a sharp tone to my voice or in a mean way, but I didn't hear it, and certainly didn't mean it that way. I become depressed and frustrated easily.

*****(also taken fromt he LDS Families board)

Sorry this is so long, but I'm really trying to get some advice and see whether people who are actually dealing with it think it could be a possibility.

TIA

Jayme

 

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iVillage Member
Registered: 12-22-2003
Tue, 06-22-2004 - 11:34am
Welcome to our cyber home, Jayme.

You covered lots of ground in your post, but I think there are a few basic issues that need to be addressed.

Let's start with your son's age. 3 years old is young for any diagnosis. This tends to be the age where they identify areas of concern, i.e. speech/language, fine & gross motor, etc., then treat the areas of concern...keeping a watchful eye on the child's development. It's not unheard of for a 3 year old to be Dx'd with something or another, but it's also unlikely that said Dx will "stick" over the years. Many of us on this board have kids who were Dx'd with PPD-NOS early on, and those Dx's have changed as our children have grown. (My son's Dx is now Asperger's.)

Now, on to some of the "misinformation":

First of all, the ability to potty train is in no way an "indicator" of whether or not somebody falls on the spectrum of autism. For example, a great many children Dx'd with ASD also have problems with Sensory Integration Dysfunction. SID can be a cause for both early potty training and delayed potty training. It all depends on the child. I'm not sure what qualifications the Early Intervention tester has, but I seriously doubt, based on that comment, that he/she is as well versed in the world of Austism Spectrum Disorders as he/she might like you to believe.

Secondly, your DH's feelings about Asperger's Syndrome is unfortunate. I know lots of people (both youth and adults) with ADD who do not struggle with the same issues as those with Asperger's Sydrome. It sounds to me that the idea of ADD is more acceptable to your DH than the word Austism (probably because of the family's history with ADD), and therefore he's not willing to consider other possibilities.

Thirdly, I'm not sure what you're reading about AS, but the idea that people with AS don't marry or have families, never make eye contact, and are clumsy...well, that's just somebody making broad generalizations. My husband and his mother are both AS, both are married and have families, while they tended to excel more academically than in sports, I wouldn't say either of them are clumsy.

No matter what tag is put on it, Austism Spectrum Disorder, High Functioning Autism, Asperger's Syndrome...many of the symptoms overlap, many of the treatments overlap...the real key is getting a proper diagnosis. I'm pretty confident that the ladies on this board will tell you that you're not likely to get the proper Dx from your school district, or your pediatrician. If you decide to pursue the issue, what you need to do is ask for a referral to a specialist. At the very least you would need to consult as Pediatric Psychatrist, a Pediatric Developmental Specialist or (this is the ideal referral...but they're hard to find and even harder to get in to see) a Neuropsych.

Now...where's Renee/Paula/Sio/Candes/"and the rest"??? They can all add ALOT to what I've mentioned, no doubt.

HTH

Amy

Meez 3D avatar avatars games

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Registered: 03-26-2003
Tue, 06-22-2004 - 12:12pm
Thanks so much for your reply. I appreciate it so much. I have always agreed that ADD, OCD, SAD and the like should not be diagnosed until at least 1st grade, and unless it is a major case of ADD, preferably not until puberty because I believe a lot can change during that time. But this tester acted like if autism of any form was a problem, that the sooner we find out and begin working with it, the better off he will be. I have to admit that I am so confused about a lot of this. My dh actually wondered if he might be autistic a year or so ago, and I told him he was crazy. At the time I was not aware of HFA or AS. I believe a lot in mother's intuition, and mine was telling me that there was no way this child was autistic. But now that I've been reading about AS, I'm beginning to wonder. I can't remember any of the websites I was looking at now, but the info I found about families had me really confused, because like I said, if Johnathan has AS, I really think there may be a possibility that I have it too. It sure would explain a lot about all the problems I had as a kid. But here I am, married for almost 5 years with 2 children. I am happy. I am a sahm, and love it. I'm planning on trying to get a job with Weight Watcher's in the next few weeks. I have never had any kind of medication, other than a few times that I've been on paxil when I was having some major problems with depression.

I don't remember where it was, but I found a "test" online that did not claim to diagnose AS, but would give you an idea. It said that most people with AS score 32 or above. I scored 30. A lot of the things it had on it were way over my 3yo's head, so I didn't do one on him.

A few more thoughts. When Johnathan was a baby, he never put things in his mouth. We finally had to make him feed himself by putting a biter biscuit in one of his hands and pushing his hand to his mouth. He never got into things, and never really has. He is a curious kid, yes, but rarely causes much trouble. If we are outside, he will just wander with no care in the world as to whether we are still at his side or not. Anything that makes a buzzing noise is just terrifying to him. He totally freaks out! He is also terrified of the shower. He paces a lot, and sometimes when he paces he just stares up at one spot on the wall as he walks back and forth. He will also freak out if he spills on himself, even if it's just a couple drops. He also doesn't seem to understand that other people can hurt just like he does. I've been trying to teach him this, but it's like talking to a wall. When he hits me, I will tell him "Ouch! That hurt Mommy! Please don't hit me again.", then if he does it again, he goes to time out for 3 minutes. After time out, I go and talk to him and try to explain to him that if someone hits Johnny, it hurts Johnny. And if someone hits Mommy, it hurts Mommy. When I try to explain things like this to him, it's like it's falling on deaf ears, and it is so irritating. I know he can hear me. I just can't seem to explain any of those things to him so that he will understand.

Ok, that last part kind of turned into a vent I think. Sorry. Sometimes I just wonder what in the world I am doing, you know? I try and try to get through to him, and fail over and over. I love this kid so much and I just want the best in the world for him. Sometimes I feel like he deserves better than what we are offering him.

Jayme

 

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iVillage Member
Registered: 03-26-2003
Tue, 06-22-2004 - 12:56pm
Amy really did a wonderful job repling to your post so I don't have alot to add, but tend to be a bit longwinded anyway.

I would suggest there is an online test at childbrain website that is a good screener for PDD's. The boards are a bit funny with links and sometimes will delete the post, but if you do a search for childbrain and PDD it should come up pretty easy. Then #6 on the PDD page is an assessment questionaire for PDD's that works pretty good for kids.

Although there are some little flags present, it is impossible to tell if your son is on the spectrum or not. SOme of those flags could be symptomatic of something else. I think you are doing the right thing by getting all the evaluations completed and getting him therapy young. Regardless of diagnosis, it is the early treatment that is important and you are seeking that out and getting it done.

If you take that quiz and find he does have a number of ASD symptoms you may want to take him to someone who specializes in ASD's for an evaluation. Your local Autism society of america will probably know the professionals who are best in your area. I have had good luck with neurologists, but know many who have seen psychologists or developmental pediatricians.

However, be warned at this young age it is hard to diagnose kids on the mild end accurately. Some kids will exhibit ASD symptoms due to other problems and get a diagnosis that is later found to be incorrect and some kids will get another diagnosis that is incorrect when they are actually ASD. So you will want to do your research as well for you know your child best and what you say to the examiner will make alot of difference. My ds went to a well renowned autism neurologist at 3 y.o. DH and I were insistent at that age that he was not PDD and answered the questions as such. We also knew all the right words to use as we both worked in the field and she was our older ASD dd's doctor. She evaluated him for an hour and based on that and our reports said he could be mistaken to be PDD and had some symptoms (mostly sensory) that appeared to be PDD, but based on the strengths we mentioned that she felt he was not PDD but rather CAPD and SID. Others have said ADHD. That was wrong and he is definitely on the spectrum now. It just took ustil he was about 7 for his symptoms to be so pronounced that it couldn't be ignored anymore.

That is my MORE than 2 cents worth.

Renee

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Registered: 08-22-2003
Tue, 06-22-2004 - 2:07pm
Hi Jayme,

My name is Shelley and I have a 3 yr old DS that is (finally) seeing the developmental pediatrician tomorrow for his eval. I was amazed to read your post because I could have written it verbatum about my DS. He taught himself the alphabet, out of order at 18 months (not with the song), knew all letter sounds (phonics) a month later. He was first obsessed with octagons, then triangles and squares. Memorized "Volare", "That's Amore" and "Fly Me to the Moon" and loved to entertain my dh's Italian family with his vocal skills. Loves the drums and "air" guitar. HOWEVER...had killer tantrums from 2-3 yr old (much better know), hated transitions, not much interest in other kids, (that too is improving), lined up EVERY thing in the pantry cabinet, craves sensory input (puts inappropriate things in his mouth, likes the feel of satin on his face, loves to be tickled). He is also a bit clumsy and has an odd gait. Very verbal, testing off the charts for expressive and receptive language but has difficulty telling me how he feels. Often quotes books, movies, TV. He is exactly at the same stage of potty training as your DS (eerie isn't it). Anyway...you get what I mean.

My DS recently qualified in our school district for special ed preschool services. He will get OT 2x week and PT 1x and ST 2x per week. They felt he needs a couple years to develop social skills and learn to redirect his preoccupation with numbers and letters (his obsession) to more age appropriate imaginative play. They will also help with his sensory issues and with his picky eating. He will be going to school 5x per week for 2 1/2 hours.

I feel my DS is probably Aspergers with some SID, he may also have some hyperlexia. I can't wait to find out as I, too have been suspecting something since 18 months. My DH has been skeptical but supportive since he's seen some of what I've been concerned about. He agrees to get him help now so that life will be easier later. I feel DS is on the mild side and very high functioning but his quirks may affect him socially and affect his self esteem. I will post tomorrow and let you know what the ped. finds. Feel free to email me to talk further...Welcome to this very supportive board. You will find lots of help and friendship here.

Good Luck!

Shelley

iVillage Member
Registered: 06-23-2004
Wed, 06-23-2004 - 10:11am
Hi Jayme,

I know the frustration of trying to explain things to a child who is bright, who is loving and wonderful, but who just doesn't seem to "want to hear" or to "care". I emebmber so well the feeling of being betrayed... where was my beautiful, sweet baby, my smart, precocious 1 year old? Who was this 2,3,4,5 yr old who woud NOT do as he was told, would not be gentle, or listen or understand? Well, as he got older he seemed to be a bit more aware, and to make a bit more of an effort to try to follow directions, or to listen to others....

Long story short, as there were so many things going on, though at the time they were subtle and could all be explained away by his age, or circumstances, etc... It turns out that my ds has AS, and what a relief, in a way, because now I know it isn't my parenting, and he's not purposly being mean, or rude, or not complying. Also, there are strategies, and ways of helping or supporting him that work well.

Also, the future is bright. After elementary and highschool (which I admit are/could be tough) he'll be able to choose his own subjects of interest, and he may very well go on to be an engineer (like my father whom I strongly suspect has AS), or a professor, or doctor... whatever most interests him he is very likely to excel at. And since his family and closest friends understand him, and know what he is dealing with, we are there to support him.

A very good book (I keep taking it out of the library) is "The OASIS Guide to Asperger Syndrome" by Patricia Bashe and Barbara Kirby. Also, Dr Tony Atwood is a great source of info, and has written very good books as well as having a web site. (He also speaks at conferences around the US and worldwide) his website is: www.tonyattwood.com.au/ the OASIS on-line asperger syndrome support website is: http://udel.edu/bkirby/asperger/

Hope some of this helps,

Good-luck!

Carol

Avatar for cathby
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Registered: 05-16-2003
Thu, 06-24-2004 - 8:26pm
Sorry, typing w/ 1 hand while nursing.

That chilbrain site someone mentioned also lists the crieria for autism, called DSM IV. I suggest printing it and putting yes or no in the margin and taking it to your evaluations.

Cathy

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Registered: 03-28-2003
Fri, 06-25-2004 - 9:38pm
Jayme,

Hugs and welcome sweetie! We encourage and want venting posts! This is a support board, so if you have something to say, we genuinely want to hear it. Other then that, I am very happy you found us, and I hope you feel comfortable and welcome. All our list mates pretty much covered all the thoughts I had. I cut and pasted some links for you.

This is a link to the scale. But I think you've already found it. http://www.childbrain.com/pddassess.html

This is to the DSM IV criteria as listed on childbrain:

http://www.childbrain.com/pddq3.shtml

This is to our community websight:

http://pages.ivillage.com/cl-drendrewolf/index.html

I really like Tony Attwoods books, too.

I do have one other thought. Does your son engage you in his interests, like by pointing to things?

Welcome,

Sio

iVillage Member
Registered: 02-13-2004
Tue, 06-29-2004 - 12:44pm
Hi Jayme!

I am also in Utah! My name is Barb and I have 2 boys, Jake is 6 NT and Isaac is 3 and we are currently waiting for a DX on him. I too have just started this long journey to find out what is going on.

I suggest that you call The Children with Special Health Care Needs, run by the state Health Department. They have been great help to me. They offer a lot of services for children with all sorts of needs. They bill your insurance company and if they won't pay for any of the services, then the fees are waved. They are located at 44 Noth Medical Drive, Salt Lake City, UT 84114 (801)584-8510. They are right next door to Primary Children's Hospital.

So far we have met with a Developemental Pediatrician, Physcologist and Audiologist. They have been so nice and organized and the facility is really nice too!

I wish you luck!

HTH

Barb

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Registered: 03-26-2003
Tue, 06-29-2004 - 2:54pm
Thanks. Yes, Johnathan does involve me in his interests. He just learned all the basic sounds of the letters last weekend (in one weekend!), and we have been having fun, discovering what different words start with, and he is now very proud to say that "j-j-Johnathan starts with j-j-J! I have relaxed a bit. I have decided that if he does have AS, then it's probably safe to say that I might have it too, since watching him is like watching myself as a child, and many of our mannerisms are the same. If I have it, this is just a guess, but I think I may get it from my dad. I have married and have two little boys, and am a very happy sahm. I am a musician, and progressed faster than any other piano student my teacher had ever taught (I started taking lessons at age 11 and was a virtuoso by age 15). I haven't finished school but that is because I feel my family comes first. Some day, when my children aren't as needy of me, I will go back to school and get my music education degree. I plan on auditioning for the Mormon Tabernacle Choir once I'm eligible. My dad has also married, had 3 children and currently has 9 grandchildren. After 40 years he is retiring from a very succesful position as a mechanic. He will be sorely missed, as he is the only one in his company who knows how to do what he does. I am certain, that whether Johnathan has AS, ADD, OCD, SAD or whatever else may come up, his future is bright. I cannot imagine him not having a family when he grows up. And I'm sure he will be very succesful in whatever he chooses to do. I am prepared to do whatever I have to do to help him achieve his goals. I guess it's just hard for anyone to hear that something may be wrong with your child, no matter what it is. But, I just try to remind myself of how lucky I am. I have a SIL that buried her baby last year after a year and a half of raising a very high needs, multiply disabled child. My brother's youngest ds has cystic fibrosis, and while the desease has come a very long way, many CF patients still aren't living past their 20s. They may face a funeral someday themselves. So, I am lucky. If the worst I ever have to worry about AS, or some other learning or psychological disorder, I am a very lucky woman. Thanks for welcoming me here. I think I will be sticking around for a while, at least until we figure out what's going on.

Jayme and boys Johnathan and Ethan

 

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iVillage Member
Registered: 03-28-2003
Wed, 06-30-2004 - 10:01am
Jayme,

I'm very sorry it took me so long to get back to you! Though I'm happy I did. I think I just about cried reading your post! Kudos to you, girl! You have your thoughts and priorities in the right place!

I think all of us basically want the same thing as mothers: for our kiddo's to grow up and be happy, productive adults. I also want mine to reflect fondly on their childhood! In my case, my son isn't actually PDD or Asperger's, but due to a combination of a few different disabilities, he has an atypical social interaction vibe going on. Basically, he is very comfortable being alone, and gets distracted quite easily. This combined with a propensity to become overwhelmed by sound makes for one Quirky 7 yo boy! I say he has Liamism. And, what ever it is, I see a very bright future for him.

One thing my child has as a strength is his ability to comprehend and understand the feelings and emotions of others. I think this ability to naturally think abstractly in the perspective of others is what makes him not autistic (to some degree, this can be taught). (Although I'm not sure). Suzi, Candes, or Renee could better address this, but I *think* if your child at his age is engaging you, or inviting you into his world, then that is a very good sign. Of course, I'm not an expert! So don't just take my word for it! Also, you may want to ask yourself these same things. Do you, as an adult, instinctively understand the subtle nuances of unspoken language? Does your father? Is Johnathan engaging you in his letters games, or are you engaging yourself? Here is a link to an article I posted on another thread:

http://www.wired.com/wired/archive/9.12/baron-cohen.html

I will say, I think if you are this concerned, both for yourself and for your child, you should consider getting an evaluation done. It is simply amazing to me, the advances that any special needs kiddo can make with the proper supports! So regardless of what comes out of an evaluation, you could learn some really great stuff. Sure, I learned Liam was not on the autism spectrum, but that was not the 411 I got that ultimately got him on the right path. I also learned he has a major processing problem, (CAPD), and that he has severe ADHD-Inattentive, to go with Sensory Integration issues and Dyslexia. For us, this knowledge led to services. At 7, he is a lot happier then he was at 5 and 6. And, he is successful in school. Something he wanted for himself. (Although he still thinks he isn't a good reader even though he actually is).

Also, if you want to know, this board is like my home away from home! The people here helped me see my child for who he is, and helped me understand all the things I just didn't get throughout our evaluation process. And, they held my hand when it all got to be too much. As well as helped me celebrate our successes. I truly am glad you found us, and I hope you stick around, as I know they/we will do that for you, too!

Sio

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