RE: ? 4 Janice

[Guest guest]

,

LOL!  I am so sorry dear! I just can't help it.  Your child " doesn't do the best

wiping himself " ??  Do boys/men ever learn? I have a 35 year old husband who

still leaves occational skidmarks! I wouldn't put high hopes on that particular

skill!

Joy

________________________________

From: Vander Vere <loveisfosteringhere@...>

Sent: Friday, November 21, 2008 6:39:06 PM

Subject: [ ] ? 4 Janice

For everyone to begin with.  I saw a post a month or so back and someone had an

issue with the word " mentally retarded " saying something like " who says that any

more. " Well I asked a friend of mine (who is a social worker and was a medical

assistant) what the difference was, if any, between global development delay and

mentally retarded. This was the answer.  They are not the same thing.  You can

be mentally retarded (having a slower processing mind/comprehension than your

peers) without having anything " wrong " with your physical body - so you can

jump, climb, swim, be coordinated etc.  Or you could have a perfectly normal

brain (comparable to your peers), but have a body that has issues (lack of

coordination, poor fine or gross motor skills - whatever -you get the point

right.) Also, on all of the doctor appointments that I take him too, they

actually have a code number that they use and they write mental retardation on

most all of the paperwork. 

I've also seen global developmental delay (on the paperwork at the doctor's

visits, as well - so I was confused.  Were they one and the same, but maybe one

is more politically correct?  I was told, " NO, they are not the same. "   When I

say MR, it is an abbreviation for mentally retarded and it is not the same as

calling someone an MR - which is horrible (I've worked with disabled - " mentally

retarded " -children & adults since I was in high school -started with work

experience in the special ed. department, then I went on to work at a school for

children who were mentally retarded, and then our family ran a group home with

adults with the same issues (for 4.5 years), so I do not mean any disrespect or

demeaning at all, as they are beautiful people that we can learn a lot from -

including acceptance, unconditional love, forgiveness and patience, just to

mention a few of the biggies.  So with that said - I'm on to the questions for

Janice. 

Based on past posts, I have a few questions for you if you don't mind.  To begin

with, you stated that your child was in a SDC for the mental retarded in second

grade, I believe, and now is 100% mainstreamed and getting mostly As, some Bs

(and in honors classes at that)-being at the age of 13 now.  I'd first like to

know why he was considered mentally retarded.  Was it based on a low cognitive

score or was it based on emotional behaviors or the physical behaviors or

characteristics ie: lack of coordination or what.  Did you believe your child

to be mentally retarded (truly in your heart) or is that just what others (I'm

assuming doctors, teachers, ie: professionals) told you.  If based on cognitive

score, do you know what testing they used and would you care to expound on the

subject.  Then somewhere along the line, you (or someone) must have realized

that he wasn't mentally retarded (or did you just start mainstreaming and he

happened

to do better than expected?) Whose idea was it to mainstream him and how did you

go about it.  Was it in small steps, like 10% mainstreaming -say in Reading

class for X amount of time (most likely a year with an IEP) and then the next

year up it to say 25% or what?  How did you go about this??? How did all of that

transpire??? 

I have a child who is so similar (in an SDC class for mentally retarded) and I

just don't think that he is (and neither did the DAN doctor, neither does the

children's director at our church (and she ran a preschool for about 12 years

and has a teaching credential) and neither does his Mental Health worker, nor

his Court Appointed Special Advocate (CASA).  I'd like to push for more

mainstreaming, but I don't know really how to do this or how to justify it.  He

is currently in a county program which I'm learning is saved for the children

with the most severe disabilities.   He is the smartest kid in the class and I

just don't feel like he belongs there.   The DAN doctor told me, " You don't want

your child to be the smartest in the class.  I have patients who are much worse

off than your child who are 100% mainstreamed with an aide. "   Almost everytime

that I go there, he is just walking around the room, because I believe he is

bored (there is

a lot of downtime due to the disabilities of the other very needy students..) 

The teacher's own words said that there is a lot of time where he is " left on

his own " because the needs of the other children outweigh his needs (as they

have to actually feed other childrens as well as physically help  them to walk,

take them to the bathroom etc.)  He is pretty much able to do everything himself

(though he doesn't do the best wiping himself, but he is working on it). 

Sometimes, he does remind me of the people that I have worked with in the past -

sloppy face when eating, will go into a room in a public place (ie: bathroom )

and get lost when coming out - I could be looking right at him waving my

arms saying his name and he'll just be looking all over saying, " Where mommy

go? " .  He is very uncoordinated, but he has come such a long way since living

here the past two years and is getting more coordinated all the time and

stronger as well (I take him to therapy 2xs a month and she tells me what to

work on at home and I come home and do it -though I admit - not daily which I

really want to start incorporating. )  He does throw temper tantrums still, but

they are getting better.  He seems like he understands everything.  When he

doesn't understand something he says,

I don't know what (blah, blah) means?  Then I explain it to him and he says,

" Oh, thanks for telling me what " blah, blah " means. I not know that before. "  

Does this sound like you son (in the past) at all? - I've read about behavior

problems with others in this group, but most are talking about younger

children.  He didn't even come to live here until he was 7.5 y.o. and with a LOT

of emotional issues, as is common for foster children and the life that they've

lived through and the things that they seen and been exposed to - which

apparently was pretty bad for him, so that too would explain the temper tantrums

combined with being completely nonverbal - can you imagine????  But your child,

also was, older when he started making progress, so I was hoping that you could

give some examples of what he was like and how you made the switches to where he

is today. 

I am learning that these issues are common for children with apraxia/dyspraxia

(he just started talking in single words last summer and in sentences a few

months ago (after starting the oils in May) and when he first came here, his

body would shake uncontrollable when I tried to get him to do exercise (I don't

think he ever used his muscles - now he can climb and hang etc - much stronger -

much more to do though.    I'm thinking that he is going to get better and

better (yes, I'm expecting a lot, but I feel like I have to have hope for this

little guy - nobody else has for his entire life).  I hope that I'm not setting

myself up for a fall (but I don't think so) as I realize that it is a

possibility that he really is mentally retarded and will always be, but we'll

never know until we try to help him to the best of our ability.  We are

currently eating an almost totally organic, milk-free diet (still making the

switch and we have some old food to

use up first - condiments especially), he is on probiotics, a really good

multivitamin (suggested by DAN dr.), the oils, has OT at school 30 min. a week,

ST two times a week (30 min each time), one group, one individual (most of the

time), APE 30 min/wk (all at school) and I take him to PT 2xs/month.

He is 9.5 years old by the way. 

 

Blessings to You,

 

************ ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* ****

Peace I leave with you, my peace I give unto you:  not as the world giveth give

I unto you.  Let not your heart be troubled, neither let it be afraid. 

14:27

 

[Guest guest]

asked,

I'd first like to know why he was considered mentally retarded. Was it

based on a low cognitive score or was it based on emotional behaviors or the

physical behaviors or characteristics ie: lack of coordination or what. Did you

believe your child to be mentally retarded (truly in your heart) or is that just

what others (I'm assuming doctors, teachers, ie:professionals) told you. If

based on cognitive score, do you know what testing they used and would you care

to expound on the subject. Then somewhere along the line, you (or someone) must

have realized that he wasn't mentally retarded (or did you just start

mainstreaming and he happened

to do better than expected?) Whose idea was it to mainstream him and how did

you go about it. Was it in small steps, like 10% mainstreaming -say in Reading

class for X amount of time (most likely a year with an IEP) and then the next

year up it to say 25% or what? How did you go about this??? How did all of that

transpire???

===== Without actually looking through the paperwork, they phrase that they

used (this one I remember exactly) was 'borderline mentally handicapped' in the

report. I know that they took Mark for 5 days of testing and that this was

split up. I think it was the Wisk (or something like that) and the test was

divided into verbal and non-verbal components. So basicly, it was separated

between the physical skills and the intellectual skills. On the physical skills

side of things, Mark was bottom of the barrel low. Because Mark never really

exhibited any real emotional issues (far too laid back and 'hypo' for that!), I

cannot imagine that this would have been taken into account.

On the intellectual side, he didn't fare too badly which is why he was

described as 'borderline' I suspect. But he couldn't have done too well since

at that time, his speech was extremely poor and his ability to communicate with

any efficiency was fairly severe.

I never thought for one moment that he was MR... not for a second and I

completely discounted the testing as being 'shoddy'. But, I should have taken a

better look at it for inside that testing were 'clues' as to where Mark needed

some definate help.... processing, for instance. Mark's processing was very low

but at that time, I didn't understand the true implications of this.

The problem with this test was when it was time to go into special education,

they wanted to put Mark into an " Opportunities " class (which meant that he would

learn 'skills' rather then academics) rather then the 'high-level' and very

'expensive' Strategies program for kids with normal IQ's. I fought like a DOG

to put him in this class. I wrote letters and refused to take no for an answer.

I got lucky and they allowed him entrance BUT because of his low testing scores,

I really didn't have a legal leg to stand on. I felt like the Mom (Sally Field)

on Forest Gump.... sweet-talking my kid into the 'good' special ed instead of

the 'Opportunities' class. (except I wrote letters... didn't have to go quite

as far as she did in the movie!)

So, we went to the good special education class where you only get to go for 2

years at a time but for Mark, they told me they would make an exception and

would let him stay indefinately and not give him the 'boot' after 2 years. This

was the kind teachers doing, not the part of the system. We had some really

wonderful teachers at that school who just 'loved' my son. I am forever

grateful to them. One still checks in with me time to time and emails to ask

about his progress.

When Mark turned 11, I began to realize that he was in big trouble and seemed

to be getting more and more behind 'regular' kids with each passing year. I

remember bawling my eyes out for about 2 weeks straight as it dawned on my that

his global dyspraxia was not getting resolved and that he was just kind of

getting weirder with time. He was growing up physically but he wasn't mentally

or emotionally or with his self-help skills.

In desparation, I began to read and to research night and day. I found The

National Association for Child Development known around here as NACD

(http://www.nacd.org) and flew my son stateside to get an evaluation. They put

me on an intensive home therapy program whereby we did close to 3 hours of home

therapy every single day to work pretty much every area for Mark. We really

focused on his processing, in particular his auditory processing and his ear

functions. Mark started out with NACD processing at the level of a 5 year old

at the age of 11. By springtime, we had brought his processing up to normal

levels and it made every difference in the world to his function. We did a lot

of other things too but this was the 'kicker' that changed his life right

around. His teachers were dumbfounded and couldn't believe the change in him

from September to June. NACD had me pull casien from his diet which eliminated

the chronic brain fog that my son was in and they did a myriad of things which

changed his function in a zillion different ways. We also caught Mark up

academically and NACD taught me how to teach him more effectively so that we

could accomplish this. In our first year of NACD, Mark went up by close to 3

levels in math skills. Our one consolation with Mark was that he was a

tremendous reader and could decode words at a very high level. But.... he was

considered hyperlexic since his comprehension was poor. When we brought Mark's

processing levels up to norms, his comprehension of written material caught up

to his decoding ability.

When we decided to mainstream Mark; it was because his processing had so

vastly improved. His school testing of reading comprehension at the end of

grade 6 in special ed tested out at the college level! (See what a little

improvement in processing can do!!!) His math was on grade level but he still

had severe issues with organization and dysgraphia. The school gave me the

option; I could mainstream or stay in special ed; it was my choice. By this

time, Mark was doing so much better in his processing that he began to see the

kid in special ed as being 'odd' and he longed for normal peer relationships.

So.... we made the leap.

The first few months of mainstream were pretty scary for me. Mark had trouble

finding his way around the school and I worried that he would get picked on by

the other kids. But he did fine. He also still had some severe dysgraphia

issues but NACD had me teach Mark how to type and so he brought a Dana

Alphasmart to school and used that successfully in his classes.

He still has some issues with self help skills; he loses pens and pencils and

has trouble 'planning' long range assignments. He also struggles with studying

for tests and he is unsure as to 'how long' he needs to study.... so we are

working at study/test taking strategies right now with him.

This year, his hand-writing is vastly improved though not where I want it to

be and our focus is on his eye and his near point vision.

Sometimes, he does remind me of the people that I have worked with in the past

- sloppy face when eating, will go into a room in a public place (ie: bathroom )

and get lost when coming out - I could be looking right at him waving my arms

saying his name and he'll just be looking all over saying, " Where mommy go? " .

=== We eradicated this issue by doing a creeping, crawling, marching, skipping

program for Mark. It takes care of the 'getting' lost issue and works those

eyes. Our kids tend to have hyperperipheral vision and we did a lot of vision

exercises at NACD to work his central detail vision. Our kids look out of the

'sides' of their eyes and don't see whats' straight in front of them. This is a

very 'dyspraxic' trait. This is still a work in progress though it is barely

noticeable now and doesn't impede our regular life any longer. I do attribute

the lingering hyper-peripheral issues in part to Mark's poor organization.

However, kids who are hyper-peripheral tend to be remarkeable readers and have

amazing decoding skills. Give your child a lot of opportunities to develop his

reading.

For the fine motor, we went back and did a lot of deep pressure work to Mark's

hands and feet. We have done a lot of muscle strengthening and a myriad of fine

motor tasks. Again, he is better but not quite where I'd like him to be

'forever' in this.

He does throw temper tantrums still, but they are getting better. He seems

like he understands everything. When he doesn't understand something he says,

I don't know what (blah, blah) means? Then I explain it to him and he says,

" Oh, thanks for telling me what " blah, blah " means. I not know that before. "

When kids are having problems with their dominance (Mark was 'extremely' mixed

dominant), when they get 'pushed' too hard or rushed too hard, they break down

emotionally and go what is know as 'sub-dominant'. They stop using their

rational side and use their emotional side of the brain. We switched Mark's ear

dominance from the left ear to the right ear. We plugged that left ear every

single day for about 8 months and after one 'really' emotional weekend, the ear

switched. We never had one episode of this behaviour ever again after this.

POOF.... and it was gone! I don't know if this is your son's issue and without

proper evaluation, I cannot really say but it certainly could be. It was for

us...

But your child, also was, older when he started making progress, so I was

hoping that you could give some examples of what he was like and how you made

the switches to where he is today.

We did 9.5 years of system speech therapy which produced little results for

Mark. System OT produced few results as well. I now know why. They were

always trying to teach Mark 'skills' instead of looking at the underlying

issues.... which were actually his senses misfiring and not giving him good

information.

Mark was very 'dopey' and had poor self-help skills. He too had the same

bathroom issue as your son, used to get lost ALL of the time and was always to

the point of injury because his lack of attentiveness. He would actually walk

right into car side mirrors when walking through a parking lot OUCH! ....and

would slam his head painfully against the side if I wasn't holding his hand. We

were regulars at the emergency ward for stitches! He couldn't speak in

sentences or tell stories.... only phrases. He would say " what? " , " Huh " all of

the time and couldn't tell stories. If he tried, he would get lost in them. He

used to speak VERY VERY LOUDLY at inappropriate times and seemed like he was

always turned around. He would put on his clothes backwards or inside out. He

had few self-care skills such as brushing his hair or his teeth. He still eats

like a bit of a slob but is much better now, more at peer level and can now

'finally' use a knife and fork with dexterity. He had trouble comprehending

complex verbal stories yet he could read anything you put in front of him. He

was always kind of 'dopey' and off in la-la land.

He still has some of these issues but again, mostly they relate to self-care

skills in the form of taking care of his belongings and organizing his locker

and his binder. Of course, in that most of his peers fail as well! (All of

those boys seem to be slobs!)

Your boy sounds like he definately has some 'eye' issues going on.... just

like Mark had and I'll bet he has some processing issues. Look into NACD

because they know our kids.... and they know how to fix ALL of this stuff!

.....and they also know how to get your child back to mainstream education

'ahead' of the other kids rather then behind them!

Keep working with the DAN since that is a big part of the issue as well but

our older kids need a TRUCKLOAD of home therapy that is specifically targeted to

their needs/senses that are malfunctioning. Regular OT doesn't work, imo.

Hope this gives you a little insight....

Take care,

Janice, Mother of Mark, 13

[Guest guest]

,

You may be able to find NACD excercises on UTube. I have seen a few there. I

hope that helps!

Colleen

[Guest guest]

Thanks Colleen!

 

Blessings to You,

 

********************************************************************************\

***********************************************************************

Peace I leave with you, my peace I give unto you:  not as the world giveth give

I unto you.  Let not your heart be troubled, neither let it be afraid. 

14:27

 

[Guest guest]

feel free to email me off line and I will share some of mine with

you!

Re: [ ] ? 4 Janice

Thanks Colleen!

Blessings to You,

****************************************************************************

***************************************************************************

Peace I leave with you, my peace I give unto you: not as the world giveth

give I unto you. Let not your heart be troubled, neither let it be afraid.

14:27