Re: Help Help Help!!!!!!

[Guest guest]

Wow!!  Im no expert, but that sounds like classic autism.  Reading your post, it

was like you were talking about my son.  I was like you, for awhile I attributed

these behaviors to the Downs, but something told me there was something more,

and when I worked with an autistic child who acted just like my son, I

immediatly requested an evaluation.  Sure enough, he was autistic.  Once you

know for sure, its like a weight is lifted, for me at least it was that way.  I

would get him assessed.  Good Luck to you and your son. Take care, Leilani

________________________________

To:

Sent: Tuesday, October 28, 2008 8:51:01 PM

Subject: Help Help Help!!!!!!

I have several ask me why the ST may suspect that Ty has Autism too.

I beleive she suspects autism for several reason some of which I do

too. Mainly for the high sensitivity. Ty doesn't like to be touch

much at all. If you do touch him alot of times he pulls away and

makes that emmmm sound. I have a horrible time washing him in the

bathtub, clipping fingernails, brushing hair, cutting his hair,

getting him dressed. He just wants to pull away and he is so

strong. He has always had a terrible time with crowds. I remember

for the longest we couldn't even go to an outdoor game and watch my

nephew play sports for the YMCA because the cheering of the parents

would cause Ty to Zone out. Or he would just bury his head into mine

or his Dad's chest. We still avoid basketball games in the gym. HE

is always moving his head from side to side, always has for a long

time... And he is always making sounds with his mouth... I tune it

out so much now I don't even relize it like my other people do. He

has these episodes that are believed to be seizure... He has had

them since 7 weeks old, has never been diagnoised as seizures

though, however, Ty has been seen by many many therapist over the

past 6 years and they all say they look like seizures. So I got it

the other day. He had to have a thyroid test done, and well that was

like killing him you would think. He got so worked up, when we got

back to the room he had an " episode " so I got my phone out, and I

recorded it. SHowed it to his ped. Dr. and he made the referral to

go back to St. Louis to see his neuroligist. .. So we have a lot of

sensory problems. Like I said before, I am at the mercy of others

here, Am I seeing normal behavior of a child with Down Syndrome or is

it possible that of a child with Down Syndrome with Autism too? I

don't know... So any help would be great. I know every child is

different but I know they are similar too... Also another thing too,

Ty doesn't socialize either with children, he is more of a loner, He

doesn't play either, I would give anything for him to sit in the

floor and play cars and trucks with his 4 year old brother. But he

shows no intrest... He would rather sit with an adult, shaking his

head from side to side and making his cute little noises... THanks

to all for any help!!!! AMY TY TY's MOMMY

[Guest guest]

Hi Amy>Ty sounds a lot like my son . had ds/autism and also

epilepsy since 5 years old. He is now 11. He also does the shaking of his head

like he is saying no and makes sounds but the neurologist told me those are not

part of his seizures. He does it because he likes it and sometimes makes himself

laugh so hard he falls over.>> also cannot tolerate crowds or  hair

brushing, hairwashing, trimming nails and hair. The nails and  hair I usually do

in his sleep. He also HATES to wear shoes and even socks.>> does however

love to be touched and hugged but only when he is in the mood. He is very

affectionate which I thought most autistic kids aren't. But I guess that comes

with the down syndrome.>I'm sure when you see the  neurologist they will do an

EEG as that is the best way to diagnose a seizure or seizure activity.

has had a few but there was no doubt that he was having seizures. His were Grand

Mal at first. Now they call them tonic clonic (sounds like a drink to me).>He is

very well controlled on medication.>It seems like a lot of others are having

some types of seizures lately. My neurologist said that many autistic kids have

a higher incidence of seizures.>I hope you get answers. Maybe Ty just like

shaking his head.>Terry Help Help Help!!!!!!To:

 

[Guest guest]

Wow, How amazing, I too have to do Ty's nails in his sleep, and

still have trouble with it then too. Thank you so much for your

input. You know you just don't know where is the line. Ty is very

affectionate too, when he wants to be... Something that was making

iffy on the Austic part, but sounds like it isn't always that way..

Thank you, AMY

>

> Hi Amy>Ty sounds a lot like my son . had ds/autism

and also epilepsy since 5 years old. He is now 11. He also does the

shaking of his head like he is saying no and makes sounds but the

neurologist told me those are not part of his seizures. He does it

because he likes it and sometimes makes himself laugh so hard he

falls over.>> also cannot tolerate crowds or  hair brushing,

hairwashing, trimming nails and hair. The nails and  hair I usually

do in his sleep. He also HATES to wear shoes and even socks.>>

does however love to be touched and hugged but only when he is in the

mood. He is very affectionate which I thought most autistic kids

aren't. But I guess that comes with the down syndrome.>I'm sure when

you see the  neurologist they will do an EEG as that is the best way

to diagnose a seizure or seizure activity. has had a few but

there was no doubt that he was having seizures. His were Grand Mal at

first. Now they call them tonic clonic (sounds like a drink to

me).>He is very well controlled on medication.>It seems like a lot of

others are having some types of seizures lately. My neurologist said

that many autistic kids have a higher incidence of seizures.>I hope

you get answers. Maybe Ty just like shaking his head.>Terry-----

Original Message -----From: amylyn2b Date: Tuesday, October 28, 2008

11:51 pmSubject: Help Help Help!!!!!!To: ds-

autism  

>

>

>

[Guest guest]

Amy- So glad you are asking questions about Ty's behavior and not sitting

around waiting for someone to tell you that there is something unique about

your son,. Welcome to the land of unique behaviors.

Many of the kids on this list have behaviors or actions which resemble what

you are are saying about Ty. And sensory issues are a huge part of that.

He may also have seizures which the doc will help you evaluate. But a

sensory diet can be done by you even while awaiting an evaluation by an

OT/PT who understands sensory needs. Hating to be touched is part of this

because he may feel overstimulated by touch. Rocking and bouncing things

may help. Where he can adjust the amount on his own. My son's favorite

place in the whole world as a little child was burying himself in the ball

pit at Mcs. In fact there was many a time when one of my other

children would have to go get him out because he would fall asleep

buried!!!

I gave up on BATHING Elie many years ago- now we use various bath gels or

bubble baths so he soaks clean. Finally I can shampoo his hair as long as I

sluice water from a pitcher - he will not allow a shower or shower hose near

him. For years haircuts were done by 4 people!! Even asleep he would fight

haircuts. We still cut his hair at home with a razor - not scissors- but he

now sits still for a haircut. Nail cutting is done by negotiation - you

want this? First we cut your nails.

> I have several ask me why the ST may suspect that Ty has Autism too.

> I beleive she suspects autism for several reason some of which I do

> too. Mainly for the high sensitivity. Ty doesn't like to be touch

> much at all. If you do touch him alot of times he pulls away and

> makes that emmmm sound. I have a horrible time washing him in the

> bathtub, clipping fingernails, brushing hair, cutting his hair,

> getting him dressed. He just wants to pull away and he is so

> strong. He has always had a terrible time with crowds. I remember

> for the longest we couldn't even go to an outdoor game and watch my

> nephew play sports for the YMCA because the cheering of the parents

> would cause Ty to Zone out. Or he would just bury his head into mine

> or his Dad's chest. We still avoid basketball games in the gym. HE

> is always moving his head from side to side, always has for a long

> time... And he is always making sounds with his mouth... I tune it

> out so much now I don't even relize it like my other people do. He

> has these episodes that are believed to be seizure... He has had

> them since 7 weeks old, has never been diagnoised as seizures

> though, however, Ty has been seen by many many therapist over the

> past 6 years and they all say they look like seizures. So I got it

> the other day. He had to have a thyroid test done, and well that was

> like killing him you would think. He got so worked up, when we got

> back to the room he had an " episode " so I got my phone out, and I

> recorded it. SHowed it to his ped. Dr. and he made the referral to

> go back to St. Louis to see his neuroligist... So we have a lot of

> sensory problems. Like I said before, I am at the mercy of others

> here, Am I seeing normal behavior of a child with Down Syndrome or is

> it possible that of a child with Down Syndrome with Autism too? I

> don't know... So any help would be great. I know every child is

> different but I know they are similar too... Also another thing too,

> Ty doesn't socialize either with children, he is more of a loner, He

> doesn't play either, I would give anything for him to sit in the

> floor and play cars and trucks with his 4 year old brother. But he

> shows no intrest... He would rather sit with an adult, shaking his

> head from side to side and making his cute little noises... THanks

> to all for any help!!!! AMY TY TY's MOMMY

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

Hi ,

Thank you for you input on this, This is making me have an AhHa

moment. LOL... I am from around Sikeston, MO. NOt far from it. We

use St. Louis Children's and we will be going to the Down Syndrome

Clinic in January. Our 2nd visit to them. has helped me

alot, I really like her. I am nervous about Ty going back to the

neuroligist, I am seriously thinking about calling and changing the

Dr. this Dr. actually released Ty less than a year ago, saying that

these episodes are behavioral.. I don't think they are for one,

they started when he was just 7 weeks old. Thats not possible... No

behaviour problems at that age I don't think... But anyway, I am not

sure about him seeing that same Dr..

Well it is nice to hear from others. Thank you so much. AMY

> >

> > Hi Amy>Ty sounds a lot like my son . had ds/autism

> and also epilepsy since 5 years old. He is now 11. He also does the

> shaking of his head like he is saying no and makes sounds but the

> neurologist told me those are not part of his seizures. He does it

> because he likes it and sometimes makes himself laugh so hard he

> falls over.>> also cannot tolerate crowds or  hair brushing,

> hairwashing, trimming nails and hair. The nails and  hair I usually

> do in his sleep. He also HATES to wear shoes and even

socks.>>

> does however love to be touched and hugged but only when he is in

the

> mood. He is very affectionate which I thought most autistic kids

> aren't. But I guess that comes with the down syndrome.>I' m sure

when

> you see the  neurologist they will do an EEG as that is the best

way

> to diagnose a seizure or seizure activity. has had a few

but

> there was no doubt that he was having seizures. His were Grand Mal

at

> first. Now they call them tonic clonic (sounds like a drink to

> me).>He is very well controlled on medication.> It seems like a lot

of

> others are having some types of seizures lately. My neurologist

said

> that many autistic kids have a higher incidence of seizures.>I hope

> you get answers. Maybe Ty just like shaking his head.>Terry- ----

> Original Message -----From: amylyn2b Date: Tuesday, October 28,

2008

> 11:51 pmSubject: Help Help Help!!!!!!To: ds-

> autismyahoogroups (DOT) com 

> >

> >

> >

[Guest guest]

Like I said before, I am at the mercy of others here, Am I seeing

normal behavior of a child with Down Syndrome or is it possible that

of a child with Down Syndrome with Autism too?

Hi Amy, one of the reasons why I had asked if the ST suspected the

autism was so that you have a witness who noticed the same thing as

you've mentioned which is more power your way to request for the

testing needed and mother does not seem odd, trust me you can come

across this too.

What you wrote, yep, can totally relate, this is not a typical

individual with DS. There are some that do have some challenging

behavior issues but like what you have described is a little unique

alright.

Can you relate?

Autism is a developmental disorder that affects children in three

areas: social interactions, communication, and repetitive behavior.

Autism has a strong genetic basis; however, it is unclear which

mutations cause the disorder. The prevalence rate has been reported as

1 per 150 births and it is four times more common in males than

females. Signs and symptoms of autism can present during early

infancy, however, the diagnosis can be delayed due to varying degrees

of presentation per child or an initial normal presentation with

regression during later years. Autism Spectrum Disorders also includes

Asperger's which is similar to autism except individuals with

Asperger’s generally do not have language or cognitive delays.

Early diagnosis is important as early intervention with various

modalities such as Applied Behavioral Analysis, Occupational Therapy,

and Speech Therapy has been shown to be beneficial. Biomedical

treatments are also offering different methods of treatment and a

possibility of recovery from such a complex disorder.

Symptoms of Autism Spectrum Disorders include but are not limited to:

* Resistance to change

* Difficulty in expressing needs, using gestures or pointing

instead of words

* Repeating words or phrases in place of normal, responsive language

* Tantrums

* Obsessive attachment to objects

* Difficulty interacting with others, especially with peers

* Not wanting to be touched or cuddled

* Little or no eye contact

* Unresponsive to normal teaching methods

* Sustained odd play

* Spinning objects

* Apparent over-sensitivity or under-sensitivity to pain

* No real fears of danger

* Noticeable physical over-activity or extreme under-activity

* Uneven gross/fine motor skills

* Non-responsive to verbal cues; acts as if deaf, although hearing

tests in normal range

* Hand flapping

The interventions mentioned above at an older age as my son was dx'd

with autism at 13 y/o, is where my son benefits from so do continue

your mission seeking the assistance needed.

The school psychologist back when no one believe me was due to her

having a brother with DS only and since working with many individuals

with autism, she applied the test needed first time she met my son,

she immediately noticed the autism. I luck out due to never knowing

anything about autism until I was desperate for some solutions on the

toilet training and a lot of those challenging behavior issues

Dr. Bonnie out in Ohio added on to my mission which helped

tremendously. I even came across several psychologist and

psychiatrists for other reasons and without even testing him, they

recognized the autism traits and were surprised to see how autism

could co-exist with another disability.

Since learning about some of the Positive Behavior Support, it is

stepping back to analyze and ask -

Why do we do what we do?

Answer:

To get good things.

To escape from or avoid bad things.

All behavior serves some purpose or accomplishes something.

Every person is unique.

The best way to help someone.

Change his/her behavior is to first understand the reasons behind the

behavior.

Since my son was dx'd with autism, this open lots of doors towards the

interventions needed, so hope you will find some towards your way for Ty.

Over on the left hand side if reading directly from the listserve,

click under the links file then scroll to sensory integration and

there is a site with a check list, this helps to see if TY fits right

along with the sensory process disorder which seems like.

Irma,20,DS/ASD