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Post by hgiglio on Jul 18, 2005 21:19:41 GMT -5
I am curious about those of you in the unomas world who have a dual diagnosis for the child.
Jake (6) was just diagnosed with PDD and we are taking him for further evaluation at an autism clinic at Kennedy Krieger in Baltimore.
Jake has many "autistic traits" such as dangling things, patting things on his face, turning switches on/off, opening/closing doors, humming, decreased eye contact, no awareness for safety, loves anything with buttons, loud music, etc. I could name a million things.
I have been on a DS-autism web ring and so many people have said that they were blown off by people/docotors/teachers/therpist when they talked about all their child's quirky traits. "It is just part of the DS and the retardation."
I have been around many kids with DS and Jake is different in so many ways. We have talked about it since he was little bitty. We finally feel validated in one respect. But, it has opened a whole entire world. So much to learn, etc.
So, just wondering if there are others out there. I love this site and miss all the interaction with everyone.
Holly
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Post by ALLISA on Jul 18, 2005 23:45:48 GMT -5
Holly....I know A. (Adrienne) Russell's mom has an Autism diagnosis as well..... and dual diagnosis have definitely been discussed a lot here. My daughter is scheduled for an eval in a couple of months ( that was the earliest appt.) I fear that she, too may have a dual diagnosis. She has pretty much every symptom you just described (except the dangling...she has never done that). She is 5 and her communication is very limited beyond her tugging me or hitting ( see my post on the general board !) I pray that I am wrong and I'll keep seeing improvements because honestly I have in the past year....but today while at the beach, she was just "doing her thing" walking on the dock and "chanting" ...I heard a little girl say she thought Erin was a zombie  Another little girl piped up "she's not a zombie...she just has special needs"  That was sweet....but still ....ouch..... |
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Post by momofrussell on Jul 19, 2005 8:23:52 GMT -5
Holly, my Russell does have a dual DX... and not PDD... he is Autistic in the eyes of the Ped Neuro  Not that it makes much difference... but he does have a dual DX. What would you like to know? We had a great thread a while back on all of this, on the main BB forum... I may have to hunt it down so you can see it. For me.. and our doc... this is how I feel "Autism" is. It is a set of characteristics that CAN BE brought on by another DX/S or by itself. Some children JUST have Autism, and some have Fragile X and are Autistic, some are VI and have Autism, and some have DS and have Autism. You even can JUST be MR and Autistic. I saw a CNN Presents show in a girl who was JUST MR and Autistic... so... some people need to get their heads out of the sand and realize Autism is not it's own entity at times... it can be brought on by other impairments also. In fact, our Ped Neuro said that children w/TWO DX's are WAY more likely to have Autism then the next guy with one or no other DX's... Hence... Russell He has DS and is VI (Cataracts at birth, Nystagmus, Ambliopia, Strabismus)... so for Russell, his brain processed things differently due to all of this. Now... there are plenty of our children that have "quirky" traits or things that can be "austistic" in nature. BUT.... twirling and dangling alone does not mean a child is Autistic. Things like little or no eye contact, no appropriate play with toys, no pointing, gesturing, parallell play, little or no interaction with peers, ect... no communication and/or skills.. (not speech... communication)... THESE are a few of the things that incompass Autism. When I look at Russell and I look at other kids w/DS.... I know that for what ever reason, Russell has something else going on... it is obvious. We finally went to a Ped Neuro that only specializes in this field and he DX'd with Russell w/Autism. Now, in retrospect, I just had a mom who's daughter is in Russell's class ask me on the phone how I knew and about the DX. She said her daughter does do "sustained odd play" or "self stimming". I had told her I have seen her daughter and she will look at you, engage in your world, communicate, ect... and she too agreed... for which I said, she probably doesn't have Autism BUT... if the "sustained odd play" or "self stimming" is getting in the way of her learning, especially at school, make sure the school does NOT let her do this. THIS right her I try to drive home to others when we talk about it. There are kids w/DS that don't have Autism but self stim plenty.. and self stimming alone causes a child do block out outside stimuli and no learning can get in. So, it's important for the schools to know this! When we moved to IL and got the DX... our school also said they didn't realize that a child w/DS COULD be Autistic too. Most are only familiar with a child who only has Autism and not other DX's. And then they met Russell LOL.... And then after he got the DX, and we moved to MO, the EC Center would say they thought it was JUST the DS and Eye stuff... for which our Ped Neuro and Eye doc would say NO LOL... So.. it's all how they look at it.. I personally can tell and see more stuff in Russell that is Autistic then DS in behavior. And our Eye doc is pretty well known in ST Louis and ALL The schools and centers KNOW our Ped Neuro... so I am ok with their DX of him. Holly, feel free to email me if you want. momof3oneds@sbcglobal.net I am always there if you need me! Or feel free to ask away on the quetsions here! There a few kids here that do have the dual DX. I don't go on the Dual DX Yahoo list serv anymore because I personally found it depressing at times LOL... I really dind't want to know what could be in store for us later in life LOL.... Also, if your son has a DX of Autism or PDD or whatever, there might be a local support group JUST for Autism there you can call or tap into. I find this very important for me personally. I learn alot and have learned to turn to the Autistic community for answers too. They help me alot to understand Russell actually! Hugs Holly!!!! Oh.. and I love the name of your bunny! heehee... we have a bunny too! Oreo is his name! A. |
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Post by momofrussell on Jul 19, 2005 8:46:44 GMT -5
Hey Holly, if you go on the main BB forum I bumped up two Autism threads for you. a. |
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Post by Chris on Jul 19, 2005 9:08:25 GMT -5
I was just discussing Ds and autism with a woman who's son has fragile X and autism. She said for males with fragile X, about 30% also have autism. I was just wondering what percentage of kids with Ds also have autism. Does it autism occur more frequently in kids with Ds more than the typical population?
Chris
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Post by wrblack on Jul 19, 2005 9:22:03 GMT -5
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Post by AnnieM on Jul 19, 2005 21:25:15 GMT -5
Hi Holly,
First off Hugs to you!! I *KNOW* how you are feeling right now, Mikey also has the DX of PDD/ASD. He was DX'd about 2 1/2 yrs ago.
For me the DX came with mixed emotions. Sadness mixed with a sense of relief(if that makes sense?)
I have ALWAYS known Mikey is "different" than others with DS. He has all the quirks/obsessions,rituals/ HUGE speech delays ETC. He fits the list to a TEE.
For me there are some days I don't think he has it, I am SURE the DX is wrong, because he is PROGRESSING and, talking more(words, but hey I take what I can get!) Even though he had extensive testing through the DS clinic I still have questioned it, however, Like today for instance I was at a b-day party and there were about 6 kids with DS ranging from age 5 yr -10 yr olds, keep in mind Mikey was the oldest (and smallest lol) They were ALL WAY more advanced I guess is the word I am looking for. The difference hit me like a TON of BRICKS today it was HUGE and actually kind of a sad day for me. So there are days where it is very apparent to me.
Anyway wrblck gave you a great website River bend DS they have a great PDD/DS section.
P.S
I THINK I meet you and Jakey at Cinnci a couple years ago??
Hugs to ya!!
Annie
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Post by Jenn on Aug 30, 2005 10:04:20 GMT -5
I am glad yall can get the dx.... The problem I have is....Courtney is 11 so her doc thinks she is too old to be dx.....They even recognize she scores high on the checklist.....but why is it that she developed these characteristics so late?  ?hmmmm.......she has always had some characteristics.....but more have come up in the last couple of years....I need an expert down here... Jenn |
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Post by wrblack on Aug 30, 2005 12:43:33 GMT -5
Don't know, but maybe worse than having the dual dx is not having it when you should, and it possibly could do your child some good. Also don't know if there's a good behavioralist developmental pediatrician associated with the clinic listed on Dr. Leshin's list,
Louisiana:
Children's Hospital, New Orleans
200 Henry Clay Ave.
New Orleans, LA
Phone: (504) 896-9254
email: jlovel@lsuhsc.edu
but might not hurt to ask them. And, if not, maybe they know where there is one.
Of course, just this minute, might not be the best time to be trying to contact people in New Orleans. -- Good luck, Bob
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Post by momofrussell on Aug 30, 2005 12:56:10 GMT -5
Jen.. what doc said this? Your ped or a specialist? Also... would it change placement or school stuff to have this DX? Not that getting it should be such a chore like you are going through.. just wondering if you live in a district that is saying Courtney could be getting more services WITH the Autism DX. Which is bit inaccurate but alot of districts do this. I can't see how "too old" means you can't have a DX for Autism.. you either HAVE it (or some variation, i.e. PDD ,ect) or you don't.. age is kinda irrelivant dontcha think!? I know you have been on the dual DX list serve on Yahoo but maybe go post there too might help! And maybe that info Bob gave you there might help guide you! Good luck! I have IM"d you a couple times in the past but you aren't there I hope all is well and glad you are ok after KATRINA hit!!!! Ironic... the 80's band.. Katrina and the WAVES! A. |
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Post by rickismom on Aug 30, 2005 16:38:53 GMT -5
Autism is commoner in kids with DS as compared to the "regular" population, but LESS than the children "with Retardation" population as a whole. (Sorry about the R word, just using it technically)
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Post by Jenn on Sept 22, 2005 8:40:08 GMT -5
yes Courtney's ped said that...."because" kids usually get diagnosed around age 3-5....."so it would be a bit ODD for her to go this long undiagnosed":.... WELL....If Courtney is developmentally 4 or 5 ...then wouldn't that "age" not apply? I believe Children's hospital in N.O. is not functioning at the moment....Oh Well.... I will post again soon, I have to take pictures of our belongings and pack up to leave....Preparing for storms and tornados.......  c ya later... Jenn |
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Post by paulinemjc48 on Sept 22, 2005 14:19:58 GMT -5
Hello. Nicky is 18 and has DS and when he was around 6 the paed suggested he has autistic tendencies as he likes to dangle things and wouldn't have eye contact. He STILL likes to dangle but now has good eye contact so I am not sure if he might ASD or not . My 9 year old, Ryan, has severe Fragile X and is autistic and ADHD , he has many autistic traits and there is no doubt about his duel diagnosis. Pauline UK |
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Post by momofrussell on Sept 23, 2005 9:48:35 GMT -5
I can understand what the doc is trying to say... BUT.. there a a few kids w/DS that don't get DX'd when they should...because some dismiss it as JUST DS and being "severe" or something like that. And again.. you can have "tendancies" and not the whole ASD thing. The most important thing is that they (school, whomever) are aware if she has "tendancies" and make sure it does not impede her learning. Jenn.. you becareful of Rita!!!!! Post up soon and let us know you are ok after it all blows over!!!! A. |
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Post by wrblack on Sept 23, 2005 10:09:15 GMT -5
Hope Children's in New Orleans gets back in business before too long. And, of course, would like for Jenn to keep Courtney out of harm's way in the meantime.
Looks like Rita may be going closer to Dr. Leshin, in Corpus Christi, than folks in Louisiana. Sure hope he and his stay safe. Wouldn't want Dr. Leshin, nor his web site, to sustain any hurricane damage. I believe he is or will be participating in a mandatory evacuation, may not hear much from him for the next few days. -- Bob
oops, update, guess I was wrong about that. Just saw a post from about 2 hours ago:
<< We ended up not leaving. I was waiting till this morning to see what Rita was going to do, so I'm still here in Corpus. Looks like the area from Galveston to New Orleans is going to get hit hard. Best wishes for those people. Len >>
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That was sweet....but still ....ouch.....
Not that it makes much difference... but he does have a dual DX. 
?hmmmm.......she has always had some characteristics.....but more have come up in the last couple of years....I need an expert down here...
