Concerning Behaviors

March 9, 2006

My hands, my legs, everything is full! ;o) But she's well worth it . . .

Kristy Colvin wrote:

,

I agree that this is a GREAT discussion! We always wonder what is " normal " and

what isn't! I know that I wondered it all the time that Tim was growing up. One

thing that I did discover in raising him though is no matter the reason for the

behavior, if it was unacceptable, it was unacceptable! It may take longer for

children with MDS to learn what is and is not acceptable behavior, but in order

for them to get along with the general population they still have to learn it!

As for the potty accidents it looks to me as he is regressing because of new

baby . I would make a big deal about what a big boy he is, but also make

sure he gets extra cuddling. I know your hands must be really full with 3 babies

in the house!

Kristy

and wrote:

Luanne,

It's funny because the more I read everyone's descriptions the more it sounds

like my son. Aidan's only 3 1/2 and took us a whole year for the potty training

to finally catch on, then another 6 months or so for it to be consistent. Then

he was doing great, sleeping through the night dry and everything. About a

month ago he started wetting his pants again during the day and then when we put

him to bed at night he would wake up wet several times. I told my husband I

wonder if there's something that would cause a person to suddenly lose the

ability to hold it in - because he used to hold it for a very long time until we

had to remind him to go.

Anyway, he also used to bite and hit - A LOT - when he'd get frustrated with

people, but most of it was because of his lack of communication. Now that he's

in preschool and they focus a lot on repetitive reminders (like using signs for

" my turn " and holding out his hand) he no longer bites. He does still hit his

sister a LOT when he gets annoyed with her and has to be reminded CONSTANTLY to

use his words. He definitely shows frustration with his body actions and

screaming a lot more than pouting or tattling I see from his cousins.

Kristy, I love these kind of comparisons because it gives a lot more insight

on what kinds of behaviors are to be expected and for me, reminds me to be more

patient with him as I see that other people are going through the same things.

Plus, with all the unknowns about MDS, it's nice to have so many norms that we

can still find through communicating with one another!

Aidan 3 1/2 mds, a 2, 1 month

Luanne Eckert wrote:

Mahrya pretends all the time and has a hard time transitioning to " real life "

when she is in the middle of role playing something. She seems to need to

finish with the pretend or she gets really put out. She doesn't do the hand or

arm flapping that has been mentioned. She doesn't seem to have rpoblems with

hitting or biting, but she has pretty good communtication skills, so that

probably helps. One of the main things we are having issues with right now

(Mahrya is 9) is wetting her pants. She had been very reliable, but all of the

sudden she is having a few accidents a week. She has yet to stay dry at

night....ever. Anyone else have these issues?

Luanne

Kristy Colvin wrote:

Hi Everyone,

I was wondering if you could characterize some specific behaviors in your

child with MDS. I know that frustration builds when there is a delay in

communication, and that often causes the child to lash out by hitting, biting,

or thowing a fit. (perhaps you can include your input on that)

Also, as I wrote in our last newsletter, Wandering is a big issue with

children with MDS.

Are there other specific behaviors that you are dealing with or have dealt

with? And, what age is or has your child exhibited this behavior?

Thanks

Kristy

March 10, 2006

Hi All!

..I was interested to see the questions here regarding our children's

behaviors...Now we all know that for our children Down Syndrome is somewhat of a

Spectrum Disorder...some our children look typically DS and some do not...some

fall right in the middle...Some have average or above average IQs and some do

not etc....I would like to know how everyone elses children are socially...do

they have a lot of friends? Do you think that they act immature?...Do they tend

to talk out of context?...Im asking this because Ariel, who some of you may

remember was diagnosed with as High Functioning Autistic a few years back, is

definitely socially immature...I have seen many posts over the years concerning

children that had the same issues. As our children get older, Ariel is 12, how

are their friendships, how do they relate to their peers? For Ariel friendships

have gotten harder as she has gotten older...how about for anyone else?

Sincerely,

Mom to Ariel 12 MDS, and the twins 7

March 13, 2006

I would like to ask the mothers with older children with MDS when their child

first rolled over, sat unassisted, crawled, walked, first word, first tooth

etc. I have a 6 month old who has not done any of these things yet and would

like to see what is the " norm " for MDS babies. I know it will vary. She is my

fourth child and my other children at this age were sitting, rolling, eating

baby food, had at least two teeth and reaching and interacting with toys really

well. I know things will come along slower with her but was just intrested when

other children with MDS experienced these milestones. Thanks! mom to

MTDS 6 months old

March 13, 2006

...

Well..shame on me for not keeping good records, but I can tell you, by 6 mos,

no, my son wasn't doing any of those things either. I recall going to his

10mos well baby visit and asking the doctor why he wasn't crawling...sitting, or

rolling yet (he wasn't diagnosed MDS until 16 mos). His teeth did seem to

come in on appropiately though... I think everything was about 6 mos behind for

... he sat closer to 12 mos than 6... he was starting to crawl commando

style by around 12-13 mos too...regular crawling was more like 16-18 mos, and

walking was 20-24 mos old. Of course every child is different, but

that's how developed!

~ANGEL~

mom to (13) Mosaic Down Syndrome/Hirschsprung's Disease

Lance (17), Tyler (14), (11)

Jaeda (9) and Shayne (3)

March 14, 2006

Hi, yes, we too, have always given Craig early reminders whenever he is

transitioning from one activity to another and he seems lately to be

" trying " not to get angry when he has to make a change. I think his slow

processing and inability to find the right words along with wanting to be

more independent (he keeps telling us that he is almost 18)are a part of

his physically lashing out. He wants to do things " right " and quickly

without assistance and yet has to ask for help- we can see it frustrates

him. He also does do self-talk to help himself with situations as is

stated in the posted article. That was good to read. We are trying to set

up some behavior help right now (these processes take so much time). I have

also posted your " behavior questions " , Kristy, that you posted some time

ago to remind me of what to calmly ask him; hopefully, before he can process

giving me a karate chop to the wall! Teenage years are tough on parents

with all kids! Just takes a little longer and a little more digging for a

longer period of time to figure out what we are dealing with and how to

help. Actually, as I think about it, there is a lot of digging along this

whole mds road. To those on the beginning of this adventure, this site is

very helpful and a wonderful outlet for many questions, fears, frustrations

and joys. It would have been good to know about this site years ago as I

find it helpful to know I'm not the only parent on this journey on those

days I need a place to know others understand what I am talking about.

Kristy, regarding your autistic question, we have always wondered if he has

some autistic tendencies tossed into the pot but it is not diagnosed.

Others have mentioned that their children like to play in their room by

themselves with their things or do self-talk. Craig also likes to go to his

room after school and spreads his toy friends all over as they are " doing a

play " (movie, play and concert reinactments). I, too, have wondered if its

his social outlet and gives him a situation he has control over. We are

trying to find sources for peer interactions-where he is comfortable- and

hope it will eventually help reduce the isolated play and hopefully even

help with his personal frustration level as he finds a place to " fit in " .

Time will tell. Terry, mom to craig 17mds

Concerning Behaviors

>>>

>>> Hi Everyone,

>>> I was wondering if you could characterize some specific behaviors in

>>>your child with MDS. I know that frustration builds when there is a delay

>>>in communication, and that often causes the child to lash out by hitting,

>>>biting, or thowing a fit. (perhaps you can include your input on that)

>>> Also, as I wrote in our last newsletter, Wandering is a big issue

>>> with

>>>children with MDS.

>>> Are there other specific behaviors that you are dealing with or have

>>>dealt with? And, what age is or has your child exhibited this behavior?

>>>

>>> Thanks

>>> Kristy

>>>

March 14, 2006

I am new to this site and found it because I have a sister with mosaic downs.

I have also worked at a place called Hope Haven with disabled people. One home

I worked at had several people with autism. We did a lot with deap pressure

and sensory things. And know from experience that the less words you can use

the better. Sometimes handing them a picture card with a picture of what you

want them to do will do the trick instead of talking. Just some thoughts I

thought you might find helpful.

My sister that has downs is pregnant. Our family would love any prayers

given on her behalf and for the baby. They are not sure yet if the baby will

have downs but my sister and her husband are not high functioning enough to be

parents. So, the next year will be very interesting as lots of decisions are

made. Does anyone have any suggestions? What are the odds of the baby having

downs? Has anyone been in the same situation? My sister and her husband want

desperatly to have a child(ren), but don't understand that their household is

not suitable for a baby or children.

Stefenie

mother of (10), (6), Clara (4), and Paige (2)

Terry Van Evera wrote: Hi, yes, we too, have

always given Craig early reminders whenever he is