Re: MDS mid-line problems/tactile defensiveness

[Guest guest]

Hi Barb, Jakobs doctor does the same testing on him. Isn't it great

how we all help each other. I thought Jake was the only one to have

these problems now I find out a lot of the other Moms have this with

their children. Maybe by all of us talking about these problems

we'll find out that this is typical of MDS. WOW!!!!! By the way,

who is Dr. koop and what does he do? Let us know if you find out

anything significant. Thanks for your continued input. Talk to you

soon. HUGS TO WALKER AND JONAS TOO!!! Jakob was so happy to see

you sent him hugs, so he told me to send some to your boys!!!! Take

care.

[Guest guest]

Hi Sharon, Wow, does Matt sound like Jakob!!!! He does the same

thing. Gags and sometimes throws up. We try all the time to get him

to try new things but it gets to be such a hassle. HE WILL NOT VARY

HIS MENU!!! He also loves fish sticks, french fries, pizza, hot

dogs, most all fruits, chicken nuggets, toasted cheese, french toast

sticks, bagels, noodle soup (but not with meat in it), and NEVER ANY

VEGETABLES. I make sure he gets a vitamin everyday which his doctor

suggested and we take him to a nutritionist so I can make sure he

doesn't eat too much. I would be so tired of eating the same things

day after day, but he will not budge. They told me a lot of this has

to do with the tactile defensiveness, and I thought it was because I

didn't vary his diet. Well, we learn somthing new everyday. By the

way, Jakob is 7 also and in first grade. Thank you for your input.

Take care. P.S. Do you live in Pennsylvania? We do!!

[Guest guest]

Hi Sharon, Maybe Jakob does eat more than Matt, but it's the same

things all the time---no variation ever! And he does the peanut

butter and jelly thing almost daily the other days it's turkey on a

bagel. I know, it makes me nauseous just making it!!! Ha! Ha!

He is also very fussy about his socks, tags don't bother him as

much, if there is a lump in his sock (where the seam is) he tells

me " something is not right here!! " , then we have to take the shoe off

and fix the sock so it feels ok. Which usually takes longer than I

have in the morning before school. ( I guess I need to work more on

patience!!)lol Oh well! Take care! (Mom to Jakob, 7)

[Guest guest]

Hi :

I get the

biggest laughs reading about Jakob/Matt. They are SO much

alike. I usually lay out the clothes for school the night

before. If something isn't right...suddenly the shoes don't

fit..the socks are too tight...etc. There is NO okay for today,

it's change it and change it NOW!

He isn't

very athletic either Judy...we tried T-ball last year but

it was too cold, he didn't like all the running, etc. BUT he will

play at the school playground for hours. We have a playset but it's

not as elaborate as the schools. He prefers the computer when at

home and that has helped him tremendously in school. He is not

overweight either but I still prefer a more active lifestyle.

Sharon (mom to Matt 7, MDS and 9)

[Guest guest]

Hi again Sharon, When is Matt's birthday? Jakob's is November 17th. You're right, they sound so much alike. Every time I get a message from you I call my husband in here to read it, we thought Jakob was "one of a kind" but I guess he and Matt have a lot in common. The computer has helped Jakob in school also. He writes pretty well but they think that later (when he has to takes notes in school) he may not be able to keep up, so if he learns how to type well then maybe he can use a word processor when he needs it. We'll just have it written in his IEP. Is Matt in first or second grade? We'll have to keep in contact so we can find out how else they are in common. Take care. (Mom to Jakob,7) Re: Re: MDS mid-line problems/tactile defensiveness Hi : I get the biggest laughs reading about Jakob/Matt. They are SO much alike. I usually lay out the clothes for school the night before. If something isn't right...suddenly the shoes don't fit..the socks are too tight...etc. There is NO okay for today, it's change it and change it NOW! He isn't very athletic either Judy...we tried T-ball last year but it was too cold, he didn't like all the running, etc. BUT he will play at the school playground for hours. We have a playset but it's not as elaborate as the schools. He prefers the computer when at home and that has helped him tremendously in school. He is not overweight either but I still prefer a more active lifestyle. Sharon (mom to Matt 7, MDS and 9)Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Matt's birthday is February 5th. He is in 1st grade. Matt loves

to read and is very good in Math. His problems in school are with

comprehension...explaining his thoughts and ideas, explaining what a story

was about, etc. He isn't a very neat writer either but he doesn't seem to

mind it. His brother hates to write and will make his answers as short as

possible in order to avoid writing any more than he HAS to.

perhaps I should stop glaring at kaitee's teacher then.... she has recently started sending home activities for kaitee and us to do at home to help her develope expression of thought and comphrension....

last week was the book "if I had my own rainbow" which we read three million times in the week... the project was to draw a rainbow, name the colors okay that was easy ... then she had to draw four things under the rainbow that made her happy and tell me why they made her happy so I could write next to the picture what she said.... I seriously didnt think she was getting the ideal at all until I went into the bathroom and told her to write her name on the picture so they knew who did it .. when I came back she also had mom under the rainbow and I asked her why. she said you make me happy too. BY GEORGE SHE GOT IT !!

this week we have harold and the purple crayon....and the activity is for her to draw a picture for her room then be able to explain what it would be like to live in that room and what you see when you live in the picture....... Thank god for blues clues and blue skidooing into pictures lol...... we have lived in so many pictures this week I am not sure what reality is anymore lol.....

but they told me this will help kaitee learn to comprehned and explain things ... debbi mom to kaitee 5 mds , jaimee 8 and chuck 17

[Guest guest]

Hi :

I told about Jakob. We find it interesting as well. See

is this is the same....Matt is very " this is how it's done and there is no

other option " .....Matt fits in very well with a structured environment and

doesn't do well with fly on the cuff...He fit in very well with

school. When the teacher would give the class an assignment that wasn't

due for a couple of weeks, she would tell the students you don't have to do

it right away...to Matt that meant not until it was due did you start on

it. Also, when they were teaching things like words that end with ed...you

said the ed, so that is the way you said every word that ended with ed like

instead of bak-t it would be bak-ed...(that is hard to explain this way

but maybe you get it). They would give out assignments on Monday for the

whole week and he would do them only in the order she would give

them...etc. Basically " there is only one way to do things and that never

changes " !!! Does this sound familiar?

Matt's birthday is February 5th. He is in 1st grade. Matt loves

to read and is very good in Math. His problems in school are with

comprehension...explaining his thoughts and ideas, explaining what a story

was about, etc. He isn't a very neat writer either but he doesn't seem to

mind it. His brother hates to write and will make his answers as short as

possible in order to avoid writing any more than he HAS to.

Sharon (mom to Matt 7, MDS and 9)

We'll have to keep in contact so we can find out how else they are in

common. Take care. (Mom to Jakob,7)

>

[Guest guest]

That's funny. I have tried to do " extra " things at home with Matt but

there's no way! However, if the " teacher " sends home extra work, he will

spend hours doing it with no problem at all. Those are good ideas they

gave you. I think I will give them a try. Thanks for the hint.

Sharon (mom to Matt 7, MDS and 9)

.... the project was to draw a rainbow, name the colors okay that was easy

.... then she had to draw four things under the rainbow that made her happy

and tell me why they made her happy so I could write next to the picture

what she said

[Guest guest]

Hi Sharon, Wow!! These two could be identical twins!! Everything we have taught Jakob from little till now, brushing teeth, combing hair, etc., HAS to be done the same way we originally showed him or he will say" this is not right! we do it this way!!!" . If I stand on the "wrong" side of the sink in the morning when he's getting ready for school ( to help him get done more quickly) he has a fit! "THIS IS NOT THE RIGHT WAY!!! he'll tell me. Sometimes I wish he would vary his routine a little, but forget that. And he also does very well with routines at school. (structure) At his school they have day 1-5, day 1 is music, day 2 is art, etc., and he knows what each day is to be and God forbid if the days get changed because of any vacations they may have. He cries and gets very "bent out of shape" and can't understand why it isn't the way its always been. We even have a tough time at the beginning of the school year, until he gets to know the routine and where he is supposed to be at different times during the day. (He is mainstreamed but has learning support classes and he changes classes all day long. This is fine as long as its' the same everyday and what he is used to.) Jakob also loves to read!! And is doing very well in reading and math. His problem is also (I CAN'T BELIEVE THIS!!) comprehension. He reads at a higher level than anyone in his class and his teacher said she could actually move him higher but she's afraid he won't comprehend what he is reading. How is Matt's memory? Jakobs teachers think he has a photographic memory. (If there is such a thing) HE NEVER FORGETS ANYTHING!!!! He can remember about a book I read to him 2 years ago. Another thing before I finish this; is Matt slow at doing things? I mean, everything with Jake is very slow and methodical. I always tell him he goes at a snails pace. He has no idea what HURRY means. Ha! Ha! Dave and I were wondering what else these two have in common. We thought Jakob was "one of a kind" but I guess Matt must be his "twin". Take care and talk to you soon! (Mom to Jakob,7) Re: Re: MDS mid-line problems/tactile defensiveness Hi : I told about Jakob. We find it interesting as well. Seeis this is the same....Matt is very "this is how it's done and there is noother option".....Matt fits in very well with a structured environment anddoesn't do well with fly on the cuff...He fit in very well withschool. When the teacher would give the class an assignment that wasn'tdue for a couple of weeks, she would tell the students you don't have to doit right away...to Matt that meant not until it was due did you start onit. Also, when they were teaching things like words that end with ed...yousaid the ed, so that is the way you said every word that ended with ed likeinstead of bak-t it would be bak-ed...(that is hard to explain this waybut maybe you get it). They would give out assignments on Monday for thewhole week and he would do them only in the order she would givethem...etc. Basically "there is only one way to do things and that neverchanges" !!! Does this sound familiar? Matt's birthday is February 5th. He is in 1st grade. Matt lovesto read and is very good in Math. His problems in school are withcomprehension...explaining his thoughts and ideas, explaining what a storywas about, etc. He isn't a very neat writer either but he doesn't seem tomind it. His brother hates to write and will make his answers as short aspossible in order to avoid writing any more than he HAS to.Sharon (mom to Matt 7, MDS and 9)We'll have to keep in contact so we can find out how else they are incommon. Take care. (Mom to Jakob,7)>

[Guest guest]

Hi :

I can't help but laugh when I read your postings. They ARE twins. His

speech teacher said that he is the only student who brings his speech

folder EVERY day. She said that one day she went to his class as usual but

this time the teacher was talking and Matt saw her at the door, so knowing

that Matt saw her, instead of interrupting the teacher she went on back to

the room. She waited a few minutes then went back to Matt's class. He

said he was waiting for her to come in and get him like she always

does. Yes, Matt can remember things I don't even remember. No one has

said anything about a photographic memory but he does remember things I

wouldn't even notice. Thank goodness at school they keep things on the

days of the week they are suppose to be on...if they miss Library on

Monday, then they just miss it...THANK GOODNESS. and I are

undecided about the slow. You can't rush him for sure but we don't notice

him being exceptionally slow. Where in Pennsylvania do you all

live? Close to Hershey? That is and Matt's favorite place to

go. Talk to you soon.

Sharon (mother of Matt 7, MDS and 9)