Advice

January 21, 2012

I keep thinking things are getting better with Kit and then she does something

and makes me think she's not getting better. She has always been my " wild

child " --from almost as soon as she could walk. She has been extremely active

and constantly into everything. BTW, she is 10 years old now. I took a year

off from my job when she turned 5 so I could, hopefully, work with her

consistently to help with self-control, toileting issues and behavior concerns

(she is also very dominating, controlloing and often just not nice (can be mean

to family members and rude to her peers, so she would be better prepared for

school. K-2 grades were extremely difficult years at school--she had many many

accidents, and many difficult behaviors--often ending up in detention and

several times " emergency removed " from school. The past two years have been

MUCH better. At 5.5 after much thought and talking to many people (possibly

even many of you) we began to try medication. Over a course of a

bout 2-3 years and seeing several different specialists we tried about 8

different meds (some of them pretty potent things I typically wouldn't have

tried with such a young child) or combination of meds. I also sought help from

child psychologists and behavior specialists. Things have gotten

better--especially at school--I can only remember one time this year where I've

been called because of her behavior. For the past 2-3 years she has been only

on on one medication, Focalin XR. It does seem to help take the edge off, but

certainly isn't a total fix.

Some of her behaviors include, non-stop chatter (which often seems

meaningless to me, but probably isn't to her) which is often loud, some

perseveration of words/questions hearing " mom " 44 times in 10 minutes (that's an

actual count) can be quite annoying, or " where going? " in the car over and over

when she knows exactly where we are going, she will change her clothes 20 times

a day or more (I've locked most rooms and she only has a handful of clothes she

is supposed to be allowed to change into), hoarding/packing bag--she will take

her suitcase, beach bags, purses, etc...and just fill them with all kinds of

things and then carry them around (often we can't find remotes, batteries, mail,

etc...because she has them in one of her many bags), being bossy and demanding,

when it's time for lunch or something similar in her attempt to be helpful she

will pull everyhting out of refrigerator, or if I mention doing laundry in a day

or two she will immediately run upstairs and brin

g down any clothes she can find (clean or dirty), at restaurants she continues

to make a " room " around her eating place--putting the menu up, lining her

silverware, ketchup bottle, salt/pepper shakers, etc.. around her plate area,

destroying things (she will still write on walls, clothes, tv's, etc...,

tear/cut things up) often there is a purpose to this in her mind, but it is

still destructive.

Today I am in tears because I'm just tired of it and am not sure what else to

do. It seems I have to constantly be with her and make sure she is not in

trouble. Maybe this is just going to be the way it is with her, but it is

exhausting. She was upstairs in her room this am (I just redid her bedroom for

her for xmas and she loves it) and I thought was playing nicely or watching a

video. When I went upstairs, her room was covered in clothes--somehow she got

in the room that is usually locked--and had all the summer clothes and boxes of

garage sale/Goodwill clothes all over her bedroom. I had made her a cute

corkboard and covered it with pictures of her, family, friends, pets, etc...

She loved to look at it and talk about the pictures. Well she had taken ALL of

the pictures off and the pictures out of the three picture frames in her room

and cut them into tiny pieces (some with a purpose to put them in the picture

section of a wallet she had found). Ugh.

People often think Mac is so " high functioning " and " brighter " compared to

Kit. I don't necessarily believe that. She is very bright, but unfortunately,

often all people see (at times including me) are behaviors. These things aren't

constant all day long, but at least one or two of them happens

everyday--somedays, of course, are better/worse than others. She is GREAT 1:1

(for the most part) and can be a happy, cooperative, entertaining, loving,little

girl in a group. I would just like to see that side of her more often. Any

words of wisdom from those of you have been through this or continue to go

through this.

Thanks for listening/reading. I feel better just being able to share this

with all of you.

Jill

Mom to Mac (13, 8th grade, Ds) and Kit (10, 4th grade, Ds)

January 21, 2012

Kit also metabolizes quickly...the doctors thought she would only need the am

dose and it would last 8-12 hrs. Like you, it only lasts about 6 hrs. and then

she would need another dose. I don't see as big of a difference in the pm as I

do in the am when she takes it and often I don't feel the need for a pm dose.

Perhaps she is getting " immune " to the current dose or the meds and needs

something else--either that or I need something!!!

Thanks for sharing and knowing where I " m coming from. Today has been a doozey

of a day and I'm ready for it to be over!!

---------- Original Message ----------------------------------

Reply-To: DownSyndromeInfoExchange

Date: Sat, 21 Jan 2012 21:48:56 -0500

>Jill

>Does she has a diagnosis of ADHD? She sounds exactly like my twins who are 7,

not Ds. They both have a diagnosis of ADHD and one also has Aspergers syndrome

(at least until the DSM-5 comes out).

>My boys pull EVERYTHING out and put nothing away! Even when I stand over them

the lack of attention makes is impossible to get an entire mess cleaned up.

I've even tried hand over hand. They just laugh and think it's funny.

>They often get up before we wake up. They will go down to the kitchen and get

any and all food out of the pantry, make a HUGE mess, and waste a ton of food.

They cant finish most things. One is in OT and that is one of his goals -

finishing something before he moves on.

>They will say mom over and over if I don't verbally answer them, drives me

crazy. They will also talk over each other and other people. Not yelling trying

to be heard, they just talk like the other person isn't talking. They talk

nonstop! Unless they are medicated and it's working well.

>We took Drew out of brick and mortar public school (he is in a public cyber

school in 1st grade) because he just couldn't handle being in a classroom with

all of that sensory input. The school would not give him an IEP b/c he wasn't

failing and it was easier for me to bring him home than to fight that battle. He

brother is still in brick and mortar public school and does well. When his meds

wear off in the afternoon he has behavior problems and then the bus is a

nightmare, but as long as I dose him again he does well.

>My boys are both well meaning, loving, sweet little boys. But sometimes it's

hard to see past the ADHD to see that. One of mine takes Focalin XR as well, it

works okay but he metabolizes it so fast he has to have it again around 1pm and

then it wears off before we can finish homework. We are trying to find the

right dose to help this but it can be frustrating. Maybe Kit needs a higher

dose or a different medication.

>I know how frustrating some days can be!

>Ruby

>

>> I keep thinking things are getting better with Kit and then she does

something and makes me think she's not getting better. She has always been my

" wild child " --from almost as soon as she could walk. She has been extremely

active and constantly into everything. BTW, she is 10 years old now. I took a

year off from my job when she turned 5 so I could, hopefully, work with her

consistently to help with self-control, toileting issues and behavior concerns

(she is also very dominating, controlloing and often just not nice (can be mean

to family members and rude to her peers, so she would be better prepared for

school. K-2 grades were extremely difficult years at school--she had many many

accidents, and many difficult behaviors--often ending up in detention and

several times " emergency removed " from school. The past two years have been MUCH

better. At 5.5 after much thought and talking to many people (possibly even many

of you) we began to try me dication. Over a course of a

>> bout 2-3 years and seeing several different specialists we tried about 8

different meds (some of them pretty potent things I typically wouldn't have

tried with such a young child) or combination of meds. I also sought help from

child psychologists and behavior specialists. Things have gotten

better--especially at school--I can only remember one time this year where I've

been called because of her behavior. For the past 2-3 years she has been only on

on one medication, Focalin XR. It does seem to help take the edge off, but

certainly isn't a total fix.

>> Some of her behaviors include, non-stop chatter (which often seems