DownSyn Forum

Amy · Posted: November 20 2008, 6:01 PM Post subject: Autistic - like Qualities?

Is this even possible? To have autistic-like symptoms ...but not actually have autism?

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Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

Helen · Posted: November 20 2008, 6:14 PM Post subject:

I don't know Amy. Expand ...!

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Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

EAS1971 · Posted: November 20 2008, 6:34 PM Post subject:

I'm no expert. But I thought "they" say that most individuals with Down syndrome have autistic-like behaviors without actually having true autism. I could be wrong!! My guess is someone could have some of the behaviors often seen in autism, but they don't meet all the dsm criteria???

But I don't know...

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

Adens mummy · Posted: November 20 2008, 6:53 PM Post subject:

Answer yes, we are having assessment and they are thinking Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) for my 5year old he has all the quirks that go with Autism not enough for Aspergers or any of the other ones.
But he has too many things going on all the time that we cant ignore.
Can you give us anything more?
http://www.jobaccess.gov.au/JOAC/Advice/DisabilitySix/Pervasive_developmental.htm

anyone feel free to PM me if you know more about this. we are overwhelmed

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Amy · Posted: November 20 2008, 7:12 PM Post subject:

Yeah. But it's hard to articulate. You really just have to be around him. The reason there are very few pictures of Austin at the wedding is because he was upstairs in the B&B having a 'head-slamming' screaming out of control melt down. For about 4 hours. The only time he was calm was when he was alone with his preschool teacher. Yet... at school (and he goes to two different ones) he's not bothered by the noise, activities and other people. However, If I take him to the same church on Sunday, and he goes into a different classroom than the one he attends at the preschool on Tuesday and Thursday, he starts a melt down.

He can not go to resturaunts, lunch rooms or the fellowship hall at church. If it's lots of people, food and any type of wait, he's ballistic. He'll hit his head, you can't get his attention, he's screaming, swinging his hands at who ever comes close. If he can't hit his head with his hands, (ie we are holding them) then he'll slam his head on the table.

Renee saw him in action and she's as perplexed as I am. I have a hard time discerning what is sensory and what is just plain old tantrum.
On the one hand he can be very social. He brings me toys, asks me for juice (one of the words he speaks consistently) he'll tug on my shirt and sort of 'herd' me in the direction he wants me to go to get him a toy, snack , plays outside ect. He even pretends with his siblings.

The teachers at school think he is awesome. But then, he eats in classroom and they aren't pushing toilet training ect.

We know he has audio sensory issue but the OT says its not defensive..it's mapping? (I have no clue what that really means)

Sometimes, he's totally out of control at the doctors office, then like last week he picked up the stethascope and put it on his chest... sat for the ear exam.. and well, had to be held down for her to see in his throat. (2 out of 3! I was happy.)

He will still spin a plate or two but not like he used too. However, he'll play the same song over and over and over again on his toy puppy. He'll scream bloody murder if the cd is not the one he loves the most (we ignore this)

The contrast between Austin and Kennedy is startling. I realize, boy vs girl. And I get that. But still... verbally and socially, Austin isn't even in the ball park as Kennedy.

I've talked to all his therapists, and the PT who's known him since birth says autistic qualities but not autism. His Ot won't say. She doing a sensory diet some time this week with him.. but she does say autistic like characteristics.

So we are trying to get an appointment for the Marcus Autism Center in Atlanta to see what's going on.

If this is transitional... maybe years of behavioral modification because he's stuck in the willful two's .. okay. I can take that. And I'll work on being consistent and training all the sibs to be on the same sheet of music (so to speak) as we are with him.
However, what if it's more, and we are wasting time getting him the therapy he really needs.

Austin is .... complex. For a while, we've excused his behavior and tried to deal with it, as a by product of being fairly non-verbal. But I think all of us have come to the realization that it's not getting better at least, not with the way we are handling him when he feels out of control.

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

jooniper · Posted: November 20 2008, 7:27 PM Post subject:

Amy, I am praying for you as you figure out what is up.

Hugs to you guys!

_________________
Gillian
wife to Sergei and mom to Elaina ( Cool

, Zoya (6) and Polina (2 1/2 DS)
http://lintofpocket.wordpress.com/

cymorales · Posted: November 20 2008, 7:38 PM Post subject:

Amy,
I do have to say that I love the picture in your siggy of you putting Austins jacket on...precious!

As for "tendencies" I know that from the 3 or 4 OT therapists that I've talked to they say that children with DS often show signs of autism. They can be very similar... now, when I see these weird "quirks" with Jaemen such as flapping his arms, and hitting his head when mad...to them they didn't quantify as autism. Now, do I think he has some sensory issues, YES! But his therapists think that some of those "quirks" are his DS. I do know a little boy here in CO that has DS/Autism he's absolutely adorable. But just like typical kids with autism, it seems to control his life and especially his social behaviors.

Edited to say: You guys are in my prayers!!! HUGS!

_________________
Carmen
Mom to---- Jayvier(13), Hailey(9) and Jaemen(4 DS)
http://mycrazylife-carmen.blogspot.com/

"...be content with what you have, because God has said, Never will I leave you; Never will I forsake you." So we say with confidence, "The Lord is my helper; I will not be afraid..." Hebrews 13:5-6

Adens mummy · Posted: November 20 2008, 7:42 PM Post subject:

Amy I will come back but have to go out now.

Matthew my 5year old is similar, nothing much fits when I read up on PDD-NOS but the Pead has said that is the whole point of that Dx because these kids just dont fit in anywhere.
Matthew does really well at Kindy the teacher has no idea what we deal with. Then i take him to Play group and he is melting down, shopping centres (but not all of them) even from birth fluoro light would have him screaming huge melt downs.
Head banging was a problem for us between 1.5 years and 2.5years, not if he has 282 in bread he will head butt. For us it’s not all about foods but eliminating some works, then others only short term. I guess there is no real one answer to what will set Matthew off.
He is affectionate, interacts really well with others… change environments and it all changes.
Yesterday we went ot the Civic centre, for our firs Summit to advocate for our kids, anyway his OT was there he held it together the entire time 4 hours being quite while people in Government Spoke. I sent her a PM 2 hours after we were home and said forget that child, he might have held it all together while we were there but now he has totally melted down.

Matthew has odd things like only Dad can get him a drink, while this is typical child behaviour, it is to an extreme that is far beyond typical. He has OCD as well as some Tics hand flicking, but he will try and hide the hand flicking he is so aware of what he is doing. That brakes my heart.

He has been fully toilet trained, then he starts weeing on the floor or in his paints the child is 1 month off 5years old. The OT said it’s all part of his Sensory disorder. He was telling me that he couldn’t’ talk while on the toilet, he would breath into his hands and flick the air or “talking” away, cause his words would go in the water and come back out. Now this isn’t’ just about having a good imagination, he was / is scared for his ‘talking” getting wet in the loo. The OT explained that because of his sensory problems, he can hear (we need a way to turn down his hearing lol) the different sound his voice is when he is over the toilet, he can internally visualise the sound of his voice entering in the toilet and echoing back out of the toilet.
So different rooms situation on different days depending on how his sensory stuff is going on that day, will determine how he copes on that day.
The other thing with going to school, Kindy… is that they get to know, that for x amount of time I’m going to feel over whelmed, they seem to hold it together cause they enjoy it or what ever. Then at other times they just don’t cope as well.
I wish I could articulate all this better for you. I could send you different emails I’ve had with our OT that might be helpful.
I know Matthews things are differnt but sounds to me liek it's within the same group .

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marlene · Posted: November 20 2008, 8:17 PM Post subject:

Amy, I don't have any advice, but I'm sorry you are dealing with all this! And my heart breaks for you about the day of the wedding. On one hand, you've got your first daughter getting married and you want to enjoy it and for it to be all perfect for her and then you've got your youngest having meltdowns! What is a mom to do and how do you enjoy this very special day? I'm so sorry! I pray you guys find some answers.

Btw, Kennedy is WAY ahead of Aleena as far as verbal expression goes, too! She's just some sincess!! Wink

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Marlene, mommy to my precious Aleena (1/30/04)

Downmama · Posted: November 20 2008, 9:16 PM Post subject:

Wow, Zach is 15 and has always had autistic "tendencies". He stims. He can become obsessed with it.

He goes into his own world. Nothing like I've seen with some of the kids in his class that actually get violent and out of control but still some very definite tendencies.

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ecki · Posted: November 20 2008, 9:16 PM Post subject:

For an autism diagnosis:

(I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)

(A) qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )

(B) qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

If a child has some of the criteria but not all as noted above, it could be considered PDD-NOS. Laurie has this diagnosis. Going to bed now and then gone all day tomorrow, but will come back with more info...

_________________
Ecki

MomMom of Kayla (Ds/Autism 4/5/04) and Laurie (PDD-NOS 7/12/01)

Our Blog - Opposite Kids
Kayla's Story http://www.ecki.com/kayla/

Friend me on FACEBOOK (please specify Downsyn, so I know who you are!)

Amy · Posted: November 20 2008, 10:24 PM Post subject:

Well Ecki. He has these. But I can't say that most children with DS don't have these tendencies/characteristics in varying degrees.

A.
1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level

B.
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

C.
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals

What is PDD-NOS?

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

EAS1971 · Posted: November 21 2008, 12:19 AM Post subject:

PDD-NOS is Pervasive Development Delay - Not Otherwise Specified.

Kristen's Ethan has a diagnosis of PDD-NOS, as well as some other kiddos on here.

PDD-NOS is a form of autism. There's true autism, and then all the other diagnosis that fall under the autism umbrella such as PDD-NOS, Asperger's, etc.

Oliver has many of the same behaviors that you described. He has never been a head banger. But he can have major meltdowns. He can lack eye contact with certain people. He can be a hand flapper/stare at his hands. He can, at times, totally tune out the world and ignore you. He likes to spin. But all of these things are just...at times. They aren't always there. He's very social. Very interactive. Likes to play appropriately with people of all ages. Loves hugs and kisses. Points things out and brings them to you. Loves pretend play.

We've specifically asked many professionals if Oliver has ADHD or autism. We get told "no". Except one dev. and behavioral ped. told us "maybe." But it's hard to say at this point. Right now we're told he's too young to know for sure. We expect some kind of diagnosis in the future....whether it be ADHD, autism or SPD.

But, we have made some dietary changes for Oliver. We have greatly increased his Omega-3s and we have mostly cut out synthetic food dyes. And we have seen a HUGE change.

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

Helen · Posted: November 21 2008, 6:04 AM Post subject:

Amy, I'm so sorry you're dealing with this. And the wedding must have been really hard for you - especially when you see the little 'cincess having such a great time and being so sociable.

I don't know if I can offer much help. From what you've said, it appears he has got some autistic-traits, but for a true diagnosis of Autism, he would need more. And it's great that he doesn't tick all the boxes - Matt used to when he was diagnosed. But Austin does tick enough for you to need to investigate this further.

If you feel you want to explore this further, then make sure you see someone who will do a thorough assessment, and really observe Austin. Matt was observed in nursery school, at home and in one other setting. The behaviours need to be present in more than one setting. If they are present in one and not another, it could be due to many other reasons. We had to fill in huge questionnaires on Matt, as did his teacher and his Portage worker to go alongside the observations. Matt's diagnosis - clear cut as it may have been - was made after a lot of thought, not just one visit to a dr's office.

Austin does not sound like he has Autism, so it's even more important he is properly observed and a diagnosis is not made in a hurry. I wish you well, friend. This can't be an easy journey for you.

xxx

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

Amy · Posted: November 21 2008, 7:02 AM Post subject:

Quote:

This can't be an easy journey for you.

No. I think the hardest part has been trying to rule out behavioral issues. Austin is by far, out of all of our children, is the most strong willed. And so, we have at times thought these episodes were just 'acting out' But at the wedding, at church wed night, it became apparent to the other 'principals' in his life, his Dad and older 2 sisters, that we are dealing with something more.

Smile

You all sound like his teachers and therapists. Not autism..but something.
I'm not really sure what to do with that.

Has anyone, (in the states) ever hired a behavioral therapist? Where would I find one. Austin isn't having any 'behavioral' issues at school, so I'm interested in finding one who will observe him at home and in public situations.

Quote:

But, we have made some dietary changes for Oliver. We have greatly increased his Omega-3s and we have mostly cut out synthetic food dyes. And we have seen a HUGE change.

We don't feed him any synthetic dyes at home. But how do you prevent this in a school setting? Or do you send his lunch? Will the school work with a special diet?
How did you increase Omega-3's. Austin will eat fish. Well, he'll eat salmon. Are you giving Oliver suppliments?

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

Tom · Posted: November 21 2008, 9:18 AM Post subject:

Sounds like PDD-NOS which is what Mikey has. Not full blown autism but autistic tendencies. Dr. Capone says that this is much more common in kids with Ds than ADHD. You might want to see about trying Risperdal.

Mikey used to head bang a lot but now he does it only rarely. We see a lot of this behavior:

http://www.randomthinking.info/wordpress/2007/10/06/mikey-stimming/

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Helen · Posted: November 21 2008, 9:27 AM Post subject:

That's not a label they use over here. It would just be 'autistic tendencies' or 'on the autistic spectrum'. You guys seem to have a name for everything! Lol

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

Tom · Posted: November 21 2008, 9:53 AM Post subject:

Helen wrote:

That's not a label they use over here. It would just be 'autistic tendencies' or 'on the autistic spectrum'. You guys seem to have a name for everything! Lol

Hey, we didn't make it up! Wink

It's from The International Statistical Classification of Diseases and Related Health Problems, otherwise known as ICD-10 (although in the US we still use the older edition ICD-9-CM). So you can blame it on the World health Organization who publishes the ICD.

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

LinMac · Posted: November 21 2008, 10:28 AM Post subject:

Amy

This thread is very interesting to me cos I have wondered about some things I see in Roberts behaviour since about last July. Its so difficult to work out what's going on at times with our kids. I too have wondered if Robert might have some Autistic behaviour....not full Autism but lots of things are as you said 'extreme' with him at times.

Everyone around me is telling me its late terrible twos, he's a boy, he's very stubborn, has red hair, I'm over anxious, I need to just love him as he is......you name it!

When I see Robert with out kids with DS especially the girls he seems very extreme.

We and Robert's preschool are working in a few areas to help Robert. We are discipline him much harder, requiring him to use more words that we know he can, etc. I am going back to review this in early Dec with his teachers.
If there are still problems I will take him to a dev specialist to see what is going on for him.

I guess I have come to realise this will take time to understand. We must pace ourselves.....Thanks for sharing Amy. Made me realise I am not going mad with my wee boy.
Lets know how this goes for you and Austin.

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

Amy · Posted: November 21 2008, 12:47 PM Post subject:

Do you really think it could be the red hair? Austin's hair is auburn. lol Very Happy

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

EAS1971 · Posted: November 21 2008, 1:46 PM Post subject:

Oliver's hair is red, too. LOL!!!!!

As for Omega-3s. I started by buying milk with DHA, yogurt with DHA and juice with DHA as well as eggs with Omega-3s. When I saw major improvements, I also started adding flaxseed to his oatmeal and his pancakes. I saw even more improvement. So, finally, I started adding a supplement to his juice. It's in a liquid form. I just put in 1/2 teaspoon into his juice. It's kinda...oily?...and smells slightly fishy. But he drinks it down, no problem!! He is not a meat or protein eater, so I couldn't get him to eat anything like salmon.

Now I no longer buy the yogurt and juice with the DHA. I still buy the DHA milk and Omega-3 eggs, add flaxseed to oatmeal and pancakes and add the supplement to his juice.

It hasn't been an issue at school yet. Last year, his school had a healthy snack policy. No junk food. Nothing but milk or 100% juice. So I didn't really have to worry about it last year. This year, he isn't in school yet. (Don't get me started on that.) When he does start school, I will try to make sure they follow his diet closely.

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

Amy · Posted: November 21 2008, 2:59 PM Post subject:

After I wrote that I went to Walgreens and found OMEGA 3 supplements for children..no additives. Lil Critters Gummy fish. THEY SMELL but they taste okay. I tried one. Rolling Eyes

Well see if there are improvements with that. We still do the vitamins for him.

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

pookeymom · Posted: November 21 2008, 3:45 PM Post subject:

We have had the PDD diagnosis now for over a year. Isaac was diagnosed just shy of his second birthday and after we started receiving services at home for him for that we were advised to take Caleb to be evaluated as well and in December it will be a year since his diagnosis.

Its really hard for me to tell what's Autism and what's Down Syndrome as I have never been involved with either of them before.

What stands out as PDD to me is excessive humming, excessive stimming, they are completely non-verbal so far and they are three now, they love love love crackers. Many days that all we can get them to eat. They are just now starting to participate in play activities with each other. They dont do crowds very well and no clapping or loud laughing around my boys, they scream and cry. With the holidays coming up its always very stressful for them and it makes me sad as we have a very large family an most events like Thanksgiving dinner or Christmas its nothing to have 50 people in the same house, bumping elbows and making lots of noise.

When we got the diagnosis, I was SHOCKED. I was not expecting it, and I had a very hard time with it. Believe it or not, I took it harder than the DS dx. We received the dx from our Down Syndrome Clinic. We went in for a routine check up asking why they hummed so much and balanced things on their thumbs for hours a day and we came out with the diagnosis. Sometime I still wonder if its true, but with the TSS that comes to the house everday she has validated the autistic tendancies they have and works with each boy 15 hours (each) a week.

I sympathize with you Amy. I hope that you can find some answers. I'll keep you in my prayers.

_________________

Stacy, Mom to Tristin 12, Camille 8, Elijah 6, Caleb and Isaac 4

Adens mummy · Posted: November 21 2008, 5:12 PM Post subject:

I couldn’t’ resist, my boy has red hair too

pookeymom

Quote:

What stands out as PDD to me is excessive humming, excessive stimming

that has been what has stood out for us to.
I felt a lot like you as well it was hard to take, even over the Ds DX. I have 2 sons now on the spectrum, so why I took so bad i dont know.

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Amy · Posted: November 21 2008, 5:19 PM Post subject:

did you say excessive humming. Add that to his list too.

Do any of you children seem obsessed with the washing machine or dryer?

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

elizasmom · Posted: November 21 2008, 6:31 PM Post subject:

I think if you have any questions or feelings it's worth it to go see the neurologist. My friends with kids with autism also say they had to go to a behavioral psychiatrist for the school district so maybe that may be a good person to check with especially if you are contemplating trying medication. I personally would also try the diet route. I know a couple people who have had great success cutting out dairy and gluten and it's affect on their child's behavior and attention. Omega 3's are great as well as some other supplements that parents swear are working. There is tons of stuff out there (and not all from Jenny McCarthy Laughing

) that it may be worth looking into. Please keep us posted!

Hugs!

_________________
Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

pookeymom · Posted: November 21 2008, 10:12 PM Post subject:

We have a front loading stackable washing machine and dryer. The washer is on the bottom and oh YES when its running, if the twins are within ear shot of hearing the spin cycle the jet into the wash room and stick their faces right into the glass part to watch it. Its actually pretty funny.

And I dont think that an autism diagnosis alone would have scared me as much as finding out my child now had a two diagnosis. Its not all that bad. I tell people I have boys with autism who were blessed with Down Syndrome because socially they make eye contact, they interact, and they are very lovey.

I think its worth getting checked out, if nothing else it will qualify your lil man for more services and we have seen a tremendous improvement over the past year with having the "extras". I'll be quite honest with you. We actually pushed a little harder to get Calebs dx after seeing what Isaac qualified for and got.

_________________

Stacy, Mom to Tristin 12, Camille 8, Elijah 6, Caleb and Isaac 4

Amy · Posted: November 21 2008, 11:42 PM Post subject:

what sort of things did the boys qualify for? Like could he get a one on one aid in school. Lol

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

McKenna · Posted: November 22 2008, 12:02 AM Post subject:

This thread is so interesting....I have thought Darah has "part-time autism." It comes and goes and she is not predictable. If you see her one day, you'd think I was a hypochondriac to think she had any autistic tendencies, and you see her the next and you would think she had the most severe autism out there. She does great at school, home, and church. Park trips or birthday parties are a toss-up and shopping trips are a no-no. Darah has complete meltdowns and withdraws completely. But, like I said, it's not full time. We also just don't do a lot of things with her because she is so unpredictable. So, it's hard to know if she really has improved like I think she has over the last six months or if it's that we are keeping her in her routine more rigidly. I think it's a combination. It's always been hard for me though because a lot of people don't see that "side" of Darah and that's made me feel like I'm making it up. Although, when DJ finally said "something's not quite right about her behavior" I had my confidence that I wasn't creating a problem in my head. Darah's on Omega 3 and we are starting Nutrivene tomorrow! Very Happy

I'm also taking milk out of her diet, but a lot of is a dice roll to see if it helps her psoriasis issues... Sad

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ecki · Posted: November 22 2008, 9:57 AM Post subject:

Tom wrote:

Sounds like PDD-NOS which is what Mikey has. Not full blown autism but autistic tendencies. Dr. Capone says that this is much more common in kids with Ds than ADHD. You might want to see about trying Risperdal.

I find it interesting that Dr. Capone doesn't seem to give a full blown autism dx to the kids he sees, but PDD-NOS. Kayla had 7 out of 12 of the DSM and he still went with PDD-NOS. Her Developmental Pediatrician went with full blown autism, though.

I would definitely go with a behaviorist if you can get one through the school district and see about applying ABA techniques to address the behaviors.

I wouldn't worry too much about Austin not getting what he needs without an actual diagnosis. Aside from getting ABA, Kayla's therapy didn't change too much. We did shift our speech away from trying to get her to produce sounds and towards a more total communication approach with signs and PECS. But if he is already getting therapy and his therapists already know your concerns, they should be addressing it anyway, regardless of an actual diagnosis.

Doing meds is a VERY hard decision, especially when your kid is SO young. Kayla is Austin's age and it was very hard for me to start her on the Risperdal (especially since she doesn't have any behaviors). In Austin's case, it may help. That would have to be done through a developmental pediatrician, psychiatrist, neurologist, etc.

We also do the gluten free/dairy free diet, although that decision was due to GI issues, not autism issues. I don't know if that has really helped socially or cognitively.

It is so hard to figure out what behavior is due to something they can't control or is manipulative. I'm having trouble figuring that out with Laurie because she is so good in school but a total monster at home! Technically, if the behavior is due to autism, it should be the same regardless of setting. That's why I find Austin's (and Darrah's) situation interesting. Although Kayla doesn't have the "meltdowns" associated with autism -- she is very easygoing! Laurie on the other hand, had the classic 30 minute or longer, multiple times a day meltdowns, so I know how frustrating that is!!!

I would really try to find someone who knows about Down syndrome/Autism. It's a unique condition separate from DS alone and separate from Autism alone. I made sure Kayla dev ped knew that the conditions could coexist before I made an appointment. And he is really more concerned with the Autism, since that is what is severely impacting Kayla's functioning.

Sorry I'm rambling...have to run out the door again! More later....

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Ecki

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kris10z · Posted: November 22 2008, 10:42 AM Post subject:

Ethan was just dx'd with PDD-NOS a little over a month ago. He was dx'd due to:

* being non-verbal
* stimming (he picks at his nails- even picked off part of the nail last night and it bled Sad

)
* repetitive behavior
* obsessions (he is TOTALLY and completely obsessed with our vacuum and broom)
* lack of initiated affection
* behaviors like swatting, kicking, growling...
* severe sensory issues

Many people who have met Ethan knows that he is social. He loves to smile back at you or laugh when you are laughing. He will reach his hand out to you, but not very often. He has had meltdowns in huge crowds (ie, Kansas City Convention, amusement park). He actually prefers loud noises- the louder the radio is, the better (within reason, of course).

We have not altered his diet at all, but I will look into it. Our dev. ped. did not recommend any other drug therapy. He went to school with Dr. Capone and thought that if we could see him, it would be a good idea.

I understand what you're saying. Ethan has just had so many other things, I didn't think that he would have to face this challenge too. I took the dx hard at first, but it doesn't change him. We already knew the behaviors were there- now, we just get some extra help in overcoming them.

Love to you.

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Kristen: Wife to Scott, Mama Bear to Ethan
(05/25/01, DS & ALL)
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LeeJo · Posted: November 22 2008, 12:54 PM Post subject:

My older son is a major sensory kid, and his official diagnosis is ADHD, but I have a feeling that if we ever see Dr. Capone that he would say PDD-NOS. For Alex, he exhibits anxiety which contributes to fits, and getting the anxiety under control with a sensory diet and Inderal (a heart medication that blocks adrenaline) has helped him a lot. We also use the same type of dietary interventions that Beth uses for Oliver with the Omega 3's, flax seed and coenzyme Q-10.

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mellysmom · Posted: November 22 2008, 1:41 PM Post subject:

We are in the same boat. Melissa just saw Dr. Pueschel and he says that he does not believe she has True Austism, but she definitely falls into the spectrum. I believe she will be labeled PDD-NOS.

Melissa is VERY different from her peers who also have DS. She is VERY stimmy. Loves to dangle anything and has to explore things with her mouth. She will often dangle and chew her toys.

She's not potty trained and has no interest in it.

She is very affectionate. She loves to play with adults and craves attention. She gives hugs and kisses. She brings favorite toys to us to play with her. She brings books to us to read ( sort of ) with her. She initiates play with us and other adults. She doesn't seem to care too much for the attention of children her age.

We have a friend who breeds Alaskan Malamutes. She LOVES these dogs and the dogs are very good with her. One puppy in particular truly enjoyed playing with her. She will give the dogs attention; then she'll grab and handful of dog leashes and spend the rest of the visit dangling them.

She does have ONE word sentences. She doesn't point , but will take our hand and lead her to what she wants if she can't say the word.

She has great eye contact. She will look us in the eye when she wants something and ask for it.

She is only just starting to do imaginative play. We need to play with her when she does.

She loves musical, light up talking toys. She HAS learned her letters and numbers this way. It may be a stimming type toy or activity, but she has truly learned her letter names and sounds and her numbers by playing with these.

Going to loud parties are not something she enjoys. She doesn't like loud crowds or crowded places. She tries to run and she cries.

Oh, and when she stimms, she lays on the floor. Drives me nuts because it looks so weird. Smile

It does hurt; this autism thing. I still struggle with it. Melissa is still Melissa and I love her to the end of the earth, but the autism hurts more than the DS.

I keep reminding myself of the things she can do. There are a LOT of things she can do and I'm so grateful for them.

Most of Melissa's annoying behavior is the fact that she thinks she is the Queen of the house. ...Okay, she is. Our biggest mistake was giving into her too easily. This is one of OUR bad habits we need to break. Smile

I hope this helps. This has been some of our experiences.

We love her. She's a joy... most of the time. LOL!

Michelle

mellysmom · Posted: November 22 2008, 3:22 PM Post subject:

Oh! I forgot to add... Melissa likes to line things up. Fortunately, she doesn't get upset if someone messes her lines up.

Also, with her dangling. She can do it ALL DAY LONG. It's not something she does only when she's frustrated or tired. Dangling is just one of those things that she does.

Michelle

Tom · Posted: November 22 2008, 6:09 PM Post subject:

mellysmom wrote:

It does hurt; this autism thing. I still struggle with it. Melissa is still Melissa and I love her to the end of the earth, but the autism hurts more than the DS.

That is so true. The Ds is easy compared to the autism.

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Amy · Posted: November 22 2008, 6:19 PM Post subject:

You are right. When you described Melly, it could have been Austin you were describing.

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Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

pookeymom · Posted: November 22 2008, 8:26 PM Post subject:

My boys "dangle" socks and anything thats a circle. The rings you put on a post, those loops you click together and can snap a toy on to hang from a baby car seat or stroller. But the socks are huge for Caleb, as a matter of fact we'll buy him some funky socks for Christmas just to dangle.

As far as services. We still get all the OT, PT, ST and Develomental teachers as we did before, but know we have a TSS (Theraputic Support Staff) a BSC (Behavioural Support) and a MT (Moblie Therapist) for my older children to be able to talk with her on a weekly basis about things they may be dealing with having siblings with special needs. And due to their diagnosis, we are trying to get into a preschool for autistic children too.

And yes, the TSS can goto school with the boys when they start.

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HannahsmomUK · Posted: November 23 2008, 7:23 AM Post subject:

pookeymom wrote:

Believe it or not, I took it harder than the DS dx

Oh I am so with you here, this really struck home with me, I found the autism so much harder to deal with than the DS. Before autism I could see Hannah progressing even if it was ever so slowly but then once autism kicked in NOTHING she just stopped developming. It is sooooooo hard. I cried more over this than over DS and I had to take time away, we went away for a vacation as I just couldn't face being around people

Tom wrote:

mellysmom wrote:

It does hurt; this autism thing. I still struggle with it. Melissa is still Melissa and I love her to the end of the earth, but the autism hurts more than the DS.

That is so true. The Ds is easy compared to the autism.

Amy sending you hugs, this must be a real hard time for you at the moment

Yes I too struggle with autism, EVERY DAY I struggle with it. Maybe I shouldn't post that and try to encourage you but this post has been so helpful in knowing that I'm not the only one dealing with this.

I still love Hannah to bits but I find it so hard to cope with the whole "she's in her own little world" and I wonder if she even knows I exsist sometimes. I long for her to look at me and say "mummy" She is 6 years old and I have never heard her utter the word "mummy" to me in recognition of who I am. This hurts so much.

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mellysmom · Posted: November 23 2008, 12:42 PM Post subject:

I can't tell you how much it helps to know that the feelings I feel are not unusual. For the longest time I felt so alone because my child with DS was soooo very different from other children with ds. I had no one to turn to; no one to talk to, because my friends had no idea what I was going through.

Also, for all of us dealing with this... I do believe it is okay to be sad about our children's struggles. Sometimes I'd felt guilty because I wasso heart broken about the autism. It took time for me to realize that feeling sad about my child's condition didn't mean that I loved her any less. I do love her, very much.( In fact, in my family, my children often tease me about Melissa being my favorite.)

It's okay to admit we still struggle. It's honest and it's true. This pain never really goes away. It does get better, but it doesn't go away. I think as parents we just eventually learn to deal with it and slowly accept it. Some days are better than others. We will have those days when the differences just seem to slam us in the gut. I think each time, it's okay to take the time to mourn again, but don't stay there. We as parents need that release; to cry, to let the hurt out, but then we need to put it down and go back to loving our child and enjoying the good and positive things about them and their lives. Everything , and every day; one day at a time.

With love and hugs to all,

Michelle

I'm going to pin one of my children down so I can get a picture of Melly here. I have NO idea how to do it. Plus, Melissa got a hold of the wire that plugs the camera into the computer. ( Yep, we dangled and chewed on it!!! LOL! ) I'm hoping the thing still works, because I really want to share my little girl with all of you.

ecki · Posted: November 23 2008, 3:32 PM Post subject:

pookeymom wrote:

And yes, the TSS can goto school with the boys when they start.

Actually, I think a TSS worker is something unique to PA, since that's the only state I've seen it mentioned.

Lately, I've come to see the joy in Kayla's stimming. She doesn't have self-injurious stims, she just stims when she finds something interesting -- the ceiling fan, a shadow, music, dangling a Groovy Girl. It does look weird. She has a few full body stims. The Stevie Wonder on speed head shaking, body twisting one. The super baby flying on the floor one. And the crossed arms finger flicking one (I have to get that one on video). But she really does seem so happy that I hate to interrupt it.

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MomMom of Kayla (Ds/Autism 4/5/04) and Laurie (PDD-NOS 7/12/01)

Our Blog - Opposite Kids
Kayla's Story http://www.ecki.com/kayla/

Friend me on FACEBOOK (please specify Downsyn, so I know who you are!)