New Here!!

iVillage Member
Registered: 03-27-2003
New Here!!
7
Wed, 06-11-2003 - 10:31pm
Actually I've probably been here before--I seem to hop around to all the other boards too. I guess I'm just nervous about next Monday. My 3yo has a 3-hour appt at the autism clinic to rule that out. On one hand I'm worried that he will be a perfect angel and they will think I'm nuts to even bring him there. On the other hand--what on earth am I going to do with a aggressive/destructive 3yo for 3 hours???

How hard are these appts that last 3-hours?? My kid doesn't play with any toys longer than a few minutes---if at all. Should I bring snacks? What about bring my own items for him to play with? He will stay occupied with a string/rope for hours.

What did you guys do??

Holly

iVillage Member
Registered: 03-26-2003
In reply to: hollym4k
Thu, 06-12-2003 - 6:44am
3 hours? Wow, that seems kinda long. All of my kids' appointments have usually been around an hour. Except the IQ test that took a little longer.

I say bring the string. They will keep him pretty busy while he's there but it might help them to understand him more if they see him playing endlessly with string. Plus with an apt that long you very well might have some down time with him. I always bring my kids' favorite toys with me, no matter which kid is going to be seen and no matter the kind of dr apt. Most of my kids are pretty easy going at the dr's. But my 8yo dd, Jade, drifts from thing to thing, okay, she actually bounces from thing to thing. LOL. But her Leap Pad seems to keep her entertained for a while. For Eva it's her talking Poe doll. She will 'mommy' it and cuddle it for hours, but it IS a bit irritating after a while. If your ds likes string then bring the string. At least string doesn't talk. LOL.

I know what you mean about being nervous about how they will behave once they are with the drs. I was sure Eva was going to be a perfect little lady when we were there and they were going to think I was out of my mind. And in her own way she was a perfect little lady. But the dr could 'feel' the scipting in her mannerisms. And she did start to get tired after the first 20 minutes, so the staff was privy to a small meltdown. Then she went and played in the corner with Poe and ignored all the other toys they had for her to play with. And then she wouldn't play with the dr when he tried to lead her in play. She just stuck her little nose in the air and said "No! I don't WANT to play with you." She does that alot.

Anyway, I hope everything goes well for you guys on Monday. It's hard when you aren't exactly sure what the reason for your kid's behavior is. Heck, right now I'm still trying to convince my ex-dh that my 12yo is on the spectrum. It's plain as day to everyone else, just not to him and his new wife. Sigh, but that's a whole other thread.

Good luck and bring the string.

Candes

Peace,
Candes  
iVillage Member
Registered: 03-21-2003
In reply to: hollym4k
Thu, 06-12-2003 - 9:10am
Hi And Welcome!!

Did they say what all they were doing at this appointment?

When Tim was dxed we had to go two days in a row. One day was for morning

and they did the Wisc test, CARS, and some others, Then the next day

they had us go in the afternoon. They wanted to see the different

time frame behaviorwise and how he answered questions, behaved and many

other things. Even how he acts if his

favorite toy isn't around. At that time, Tim didn't have a favorite

toy. He just liked to watch video movies all the time.

I'd say to bring the string. The dr may try to have him put it aside and

will note any behaviors about how he handles it. Or the dr may wish for you

to not let him carry it in with him and to just keep it in case he needs it.

Good Luck Monday and let us know how it goes.

Rebecca

iVillage Member
Registered: 03-27-2003
In reply to: hollym4k
Fri, 06-13-2003 - 7:20pm
Thanks!! At least a string is easy to put in your pocket!!

Our appt consists of seeing the neuro-dev. ped dr., speech path, and a neuro-path dr.? An hour with each person.

Another question-----

I'm assuming my kid won't be diagnosed with anything on the spectrum. I did this online PDD assessment and it came up moderate PDD. Then I ask other people about their children and they all say--"my kid did that---that's normal". So--how often does your child not play with toys? Or what age is "normal" for starting to play with others?(sitting down and playing cars or something together without aggressiveness) Or is all of this normal for a 3yo? I know that to some extent--it's normal---but at what point makes it NOT normal?? And is it normal for kids to play for hours with a non-toy item---strings, belts, cords, hangers.

Or when they say---"the kids' in their own world"---what does your kid do? And how often are they in their own world?

What about saying phrases over and over---do they do it everyday, every hour, or every week?

Does the child carry on a conversative and at what age is this expected?

I guess I keep hearing different stories that alot of this is normal for a 3yo.

And do any of your kids have seizures and how are they presented?

Holly

iVillage Member
Registered: 03-26-2003
In reply to: hollym4k
Fri, 06-13-2003 - 8:38pm
I'm glad that you're going ahead with the eval even though your friends have told you that the things your ds does is 'normal'. When my dd12 was 3 she used to do a lot of the same stuff. Her non-toy items were catsup and and cheeze. She made more messes than I thought any kiddo could. And all my my friends told me this was normal. She had grand-mal (shaking with eyes afixed) and peti mal (zoning out) siezures when she was a baby and toddler. We were told they all febrial (caused by fever) and that they too were 'normal'. She never quite learned how to carry on a give and take conversation. She would either listen or speak, but there was no in-between. She was agressive when she got tired and thought 'body surfing' down the stairs was good fun, even AFTER she dislocated her knee. She seemed somewhat 'judgemental' of everyone, especially her sisters and the other kids in the neighborhood. And these too were called 'normal', and not just by our friends and neighbors, but by her ped as well.

Now she has to undergo intensive behavioral managment therapy and social re-education because she didn't start SP, OT, psychol, etc as matter of early intervention. We lost all those years that we could have spent helping her because we listened when non-experts called her normal. She's not normal, she has PDD. If we had gone ahead and insited on the eval 'back when' then she might be more 'normal' today. At the very least she wouldn't have as many problems interacting with others as she does now.

Your ds may very well NOT be on the spectrum, but only an autism expert can say that with any certainty. Cudos for you for getting the eval done, even if it's 'just to be sure'. Too many parents hide their heads in the proverbial sand when they see something 'strange' about their kids. And something else I've seen is that other parents often go into denial over one person's kid because they see the same things in their own kid and don't want to admit that it is something to be concerned about. And they will often use excuses like "Well, why should I put my kid through the trauma of an eval only to find out there is nothing wrong?" Here's some news folks. It ISN'T tramatic to put a kid through the eval. It's actually kinda fun for them, an adventure. It's only tramatic for the parents, and that's due to the inconviniance and doubts that arrise. To the kids it's one big game.

My mother put my sisters and I through a complete developmental eval when we were kids and I STILL look back on it as a great adventure. This was way before AS was recognized in the U.S., so the twin's autism went undx'd. But the findings DID help my mother make descisions where the answers might have otherwise elluded her. And one of my sister's turned out to have mild brain damage that my mom didn't even suspect. Knowing about it helped her prepare my sister for life as an adult. In another kid it might not have mattered (that's how slight the damage was). But she has an identical twin who is incredabley intellegent and seems to have the Midas Touch. So when the question "Why is my twin so good at everything when I'm not?" came up our mom wasn't taken off-gaurd. She had answers to give her that helped her become a fully functioning adult instead of a depressed isolationist. So even if your ds turns out not to be on the spectrum the drs will have advice on how tohandle situations you are concerned about.

Again, kudos to you! Tonight at our hs co-op meeting I will raise a glass and make a toast to you and those like you. Thank you for being realistic about your ds. Someday he will thank you too (though I have to admit, probably not until he is out of college....and THAT is normal, LOL).

Peace,

Candes



Peace,
Candes  
iVillage Member
Registered: 03-27-2003
In reply to: hollym4k
Sat, 06-14-2003 - 12:07am
Thanks Candes!!

We've known he was a SK --but not until 18 mo old. After our ped told us every well-child exam--he's just an SK boy and it's normal, we still had our doubts. But he is our only boy and we only know girls--who aren't like this!!

I KNEW something was not right when one day just this past January--I actually hated him. I know it's sounds so horrible to hear a mother say they hate their child. Considering I bonded the best with him at birth and thru babyhood--until 18 mo---it's hard for me to even admit it. This one day in Jan.---he screamed off and on for about 5 hours total. He threw fits all day for every little thing and I finally couldn't take it anymore and threw him across his room(on to his bed--of course!!) I was to the point of calling CPS and have them take him away. I called my sister instead!! :) She told me about a friend of hers who kid sounded like Jacob and he has Asperger's. So that's when I called my school district and got him eval'd. (this is all after Jacob's 3y check and the Dr thought his behavior was due to lack of sleep). The school couldn't get us in until end of March. 2 days after I made the appt---they called with a cancellation and we got in that day!! I felt horrible even taking him there. I knew nothing was wrong with him. The school said something was wrong---he wasn't"normal" and they don't know what it was. Then I made another appt with our ped and got referrals. Alot has happened to us since Jan!! He started school in March and we've seen a psychologist twice who has referred us to the autism clinic. He also started OT in April for sensory issues.

A person can see all of my son's behaviors as a "normal" 3yo----if seen individually--but when you put ALL of the weird things together---it's not normal.

He has totally turned our lifes upside down and has made our family pretty stressful. I have homeschooled my 2 older girls--7y and 8yo for the last 2 years. Next year they will be going to public--because of Jacob. I couldn't teach them this year what they needed to know. My 7yo can not read and may have to take first grade over again in the fall. We have wasted a whole year!! Our house is always a noisey mess and my girls were always so distracted by Jacob yelling, screaming, bouncing off the walls--we couldn't get anything done. He stopped taking naps last Dec--so we never had any down time.

Besides feeling like a total failure at teaching my kids (my 3 sister's all hs their kids)---My friends and parent's think I'm a failure as a parent also: unable to discipline my child and he's a total hellion!!

As for seizures--I don't know if he's having those or not. One time in March--we took him to a Wiggles concert(bought tickets before we knew he may have a disorder)--and after him being really overstim'd, he was screaming commands at us on the way home. He also was hitting his baby sister over and over. He yelled--"you stupid mom!!" and then before I could even turn around in my seat--he had passed out. I figured he was really tired and emotionally exhausted. But then to realize--that could have been a seizure after an emotional outburst like that. He also does some weird eye stuff. This week I noticed him have some head jerking--about 5 jerks in a few minutes. Maybe tics? Seizures? Who knows!! Just another thing to tell the Dr on Monday. No grand mals or anything that noticable.

Now I feel like I'm nit-picking every little movement he makes and trying to find something wrong with him.

Thanks for the support!!

Holly

iVillage Member
Registered: 03-26-2003
In reply to: hollym4k
Sat, 06-14-2003 - 8:37am
Oh sweety, it doesn't sound like you are nit-picking at all. What you have described of your ds sounds very A-Typical Aspie. You aren't going insaine, and I don't believe you are a bad mother. If you were then you would probably be trying to beat your ds into submission instead of getting the evaluation. I've heard way worse horror stories about bad parents with Aspie kids than you could possibly imagine. I know a woman who's entire back was covered in scars because her mother switched her every time she acted up. And because the poor woman was an Aspie she was often seen as acting up. And that's one of the nicer stories because she lived. Believe me, throwing your ds onto his bed may not have been the best sollution but you deffinately could have done worse.

I think you are on the right track with the eval. You wil gain a lot of valuable information from it. And if he is given an AS dx then there will be a lot more services available to him, and you, that weren't before. You will not only be eligable for extended services through the psd and insurance but in some areas you can get respit care so you can get a night or so off.

I think what I would like to stress the most is that you are not alone. I know it probably seems like it with everyone telling you that your seeing ghosts, but you're not. All of us here have been through the same situations; the yelling, the screaming, the interuptions to daily life, and life in general. We've all also had to deal with the scrutiny of others and the disbelief. I still have people that try to tell me that Jade isn't autistic and that her problems are my fault for smothering her. But these people AREN'T autism specialists so I have learned to ignore them.

I choose to listen to people who know what they are talking about and to follow my gut instinct. I have to say that I have learned more about handling an autistic child from other parents of autistic children then I have from books or drs though. Books are usually very narrow in focus and drs are good at saying WHY a child acts this way or that, but not how to fix the problem. Other parents have been where I am and have lived through the situation. It really helps me when I hear others describe situations in their own homes and I can sit there and say "HEY! That's us!" (Btw, I did that a lot with your last post, LOL). Being able to identify with others is what gives us our sense of community and belonging as well as personal validation. My next door neighbor sees my kids every day and yet she has absolutely no clue what life is really like for me. But Renee, here on the board, lives 500 miles away from us, has NEVER met my kids in person, and yet she has a way homing in on exactly what is going on with my kids at pretty much any given time. All I have to do is type a few words and she understands exactly what I mean. And she's not the only one, all of the ladies here are like that. Why? because we live each others lives every single day.

Now, I'm going to say something that Renee and the rest are gonna get a good laugh from..... I HATE SHRINKS!! There, I said it. I feel much better now. And the reason that is funny is because I am a 'shrink'. I have my phd in ergomnimonics and a master's in educational psychology. I am the co-director of research for a curricula development foundation for the nuerologically impaired, a practicing behavioral therapist, and I council homeschooled families with special needs kids. And I hate shrinks. I hate the idea of sitting there pouring out my entire life's story and all the torrid details to someone that I know little or nothing about. That's probably why I never became a clinician. I think the best way one person can help another is to give them something to identify with. And I simply wouldn't be able to do that claming up and never actually letting them know WHY I know what they're talking about.

So please, stick around. Even if your ds turns out not to be on the spectrum it sounds like a lot of his issues are pretty close to what we here see and live with everyday. And WE aren't going to tell you that you're out of your mind, chasing ghosts, or anything of the sort. We have a saying. Being a homeschooler you're probably familiar with it already. "The best expert on any given child is that child's parents". If YOU think there is a problem, then probably is. Our job as members of the support board is to give you, and each other, support.

Peace,

Candes

Peace,
Candes  
iVillage Member
Registered: 03-27-2003
In reply to: hollym4k
Sun, 06-15-2003 - 6:35pm
When I read others posts--I feel like my kid isn't THAT bad, so maybe he isn't PDD or AS. When I talk to my best friend--who compares her dd with my son--she makes it sound as if Jacob's normal or that her dd isn't normal---because they behave the same. Well--they don't. I made her take that online PDD assessment from Childbrain.com(just in case) to see if maybe her dd really has a problem. She's 3.5yo and doesn't talk. I can NEVER understand a single word the kid says. My 20 mo old talks better than her. My friend won't take her in to get her speech eval'd. My friend's dd scored a 31--no PDD, while my son---after doing the test twice and being very "nice" about how "severe" symptoms are--he still scored 140---moderate PDD. Who knows how accurate those tests are and those questions are hard to understand sometimes what they mean.

Then at times I feel like he's getting better and everything will be OK--if I give it time. So maybe there really isn't a "disorder" at all and it's all maturity.

One real reason why I don't think he is AS---is because he is pretty "social". He likes other kids and tries to play. the problem is--his way of playing is aggressive, kicking, hitting, throwing things. He'd be great if playing meant nothing but "football". He does like playing by himself--because no competition. But he rarely does that and only when he's in the mood. He will only play Legos, or small Polly pockets, patterned blocks, etc. His fascination with strings, ropes is going to drive me nuts!! He's even "hung" himself with rope burns on his neck from the miniblinds. He will just climb the window sills and get them.

I'm now rambling!! I will tell you guys how our appt goes tomorrow!!

Holly