Re: Response to posts about MR and lame comment from our O.T.

[Guest guest]

Hi

You described my son at 35 mo to at T!

Consistently inconsistent - Try a dairy milk elimination diet for 2-3

weeks and document what you see. (yes I know that upsets others on

this board to suggest but IT WORKED FOR US AND I STILL AM SHOUTING

ABOUT IT FROM THE MOUNTAIN TOP)- We didn't start to see significant

progress until he was off of milk. We had progress but it was really

hit and miss.

at this age IQ tests are for the birds... my son's test scores went

up 20 points in one year.. Absolutely worthless.

Do not expect to find anything " abnormal " in all of the testing...

Apparently several others didn't find anything significantly wrong

with their child. We didn't either and had all the tests done as well.

I swear the child had a stroke but there is absolutly NO evidence of

this. HOWEVER stroke recovery techniques have really worked for us.

LOVED the Listening Program by advancedbrain.com

Some basic signs helped us communicate

find activites that work both sides of the brain and the vestibular

sense.

READ READ READ

Take any and all advice from strangers and give it a " GUT check " Make

sure you understand the why and hows

DOn't bankrupt yourself.

VERY VERY long and hard road ahead. Work on developing a good support

network for yourself as family and friends of Neuro typical kids

usually do not understand why and what you are going through.

-- In , " spearson40 "

<brentsusan@...> wrote:

>

> Hi everyone,

> I've been reading thru the posts the past couple days about labeling

> and the " mental retardation " thing. And I've also seen posts of

> members who have left this group either: (1) because they didn't feel

> welcome or (2) because they couldn't handle the fighting amongst

> members. Just a few thoughts and questions for you:

>

> (1) I hope that this group being " mostly " devoted to apraxia can be

> welcoming to us moms whose kids are multi-dimensional in their

> issues. (Mine being dyspraxic, apraxic, low tone and possibly ADP.)

> Otherwise the description of the group should say that this group is

> only for apraxic kids with no other issues. After all we've been

> through I can't handle any more rejection (and I can't imagine that

> any of the members of this board would do that as you've already been

> helpful to us the past couple weeks!)

>

> (2) Given my son's issues .... we are just not sure whether there is

> any sort of cognitive impairment. He's a mystery to us and everyone

> else. He's consistently inconsistent? (Anyone have any thoughts on

> that?)

>

> (3) After reading the most recent report written by my son's EI OT

> and EI PT (who work at the same place and see Owen back to back)....

> I challenged the OT as to why he showed Owen still at an 18 month

> level in his fine motor and why he had goals in his report all

> as " unmet " and goals that he didn't discuss with me (eating more

> vegetables? beginning to potty train?) He couldn't really answer me

> except to say, " There's only so much I can do with your cognitively

> impaired child. " So my question to all of you amazing, advocating

> moms is.....what would you do with that? (We are already on the side

> taking steps with regards to seeing a pediatric neurologist,

> bloodwork, MRI, check for lead and mercury, etc.)

>

> I knew that the comment was possible only the beginning. And made me

> feel like I'm standing in the gap between reality and hope....

>

> Warmly,

>

> Mom of Owen, 33 months

>

[Guest guest]

with your number 2 that is what i can say about my boy at that age.consistently

inconsistent. he is now 7 doing much better than he did when he was smaller.

#3- just hang in there. with my boy progress is slow but consistant. I am only

beginning to accept how slow the progress is.... His therapist would tell me it

will come that much I know, just keep me thinking positively. saying there is

not much you can do with cognitively impaired child is what NOT to say.

chris

[ ] Response to posts about MR and lame comment from

our O.T.

Hi everyone,

I've been reading thru the posts the past couple days about labeling

and the " mental retardation " thing. And I've also seen posts of

members who have left this group either: (1) because they didn't feel

welcome or (2) because they couldn't handle the fighting amongst

members. Just a few thoughts and questions for you:

(1) I hope that this group being " mostly " devoted to apraxia can be

welcoming to us moms whose kids are multi-dimensional in their

issues. (Mine being dyspraxic, apraxic, low tone and possibly ADP.)

Otherwise the description of the group should say that this group is

only for apraxic kids with no other issues. After all we've been

through I can't handle any more rejection (and I can't imagine that

any of the members of this board would do that as you've already been

helpful to us the past couple weeks!)

(2) Given my son's issues .... we are just not sure whether there is

any sort of cognitive impairment. He's a mystery to us and everyone

else. He's consistently inconsistent? (Anyone have any thoughts on

that?)

(3) After reading the most recent report written by my son's EI OT

and EI PT (who work at the same place and see Owen back to back)....

I challenged the OT as to why he showed Owen still at an 18 month

level in his fine motor and why he had goals in his report all

as " unmet " and goals that he didn't discuss with me (eating more

vegetables? beginning to potty train?) He couldn't really answer me

except to say, " There's only so much I can do with your cognitively

impaired child. " So my question to all of you amazing, advocating

moms is.....what would you do with that? (We are already on the side

taking steps with regards to seeing a pediatric neurologist,

bloodwork, MRI, check for lead and mercury, etc.)

I knew that the comment was possible only the beginning. And made me

feel like I'm standing in the gap between reality and hope....

Warmly,

Mom of Owen, 33 months

________________________________________________________________________________\

____

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[Guest guest]

Re: Consistently Inconsisten. Take a look at this to see if you might

think there is a metabolic component to this:

r. Marvin Natowicz is a neurogeneticist previously practicing at

> Mass General Hosp., Boston and the Eunice Kennedy Shriver Center in

> Waltham, MA where he was the Medical Director of Genetics. He is now

> a member of the metabolic team at the Cleveland Clinic. Natowicz is

> specifically interested in metabolic disorders in autism and, in a

> 1999 Boston based " LADDERS " lecture, enumerated a number of " red

> flags " which invite investigation into underlying metabolic

> (including mito) disease in autism:

>

> Red flags requiring further scrutiny by metabolic clinicians:

>

> 1. The autism is not classic and/or the diagnosis is not

> straightforward when observed by credible specialists. Examples of

> this are children who may score as autistic or PDD-NOS by DSM-IV

> criteria because they have language, social and behavioral deficits.

> However, professionals often say that they have " too much eye

> contact " or a certain " eye quality " or are " too social " even though

> their social skills are below expectations for developmental age.

> Diagnosticians use terms like " atypical autism " or " features of

> atypical autism, " or they may say, it's " not quite autism " but we're

> not sure what it is either. This is a " squishy " diagnosis.

>

> 2. Developmental regression: Because some 25-33% of autism is

> regressive in the first year of life, some clinicians discard these

> kids as unworthy of further scrutiny. Loss of previously attained

> skills is always significant and should be carefully regarded by

> medical professionals. Video documentation is very helpful.

>

> 3. Neurological regression: This might manifest as loss of

> muscle strength or physical ability, easy fatigue or lethargy. Be on

> the look out for intermittent loss.

>

> 4. Seizures: Some 33% or more of children with autism are

> expected to show EEG abnormality or seizure activity in their

> lifetime so many clinicians discard this very important marker for

> metabolic stress.

>

> 5. Food intolerances or avoidance: If foods cause changes in

> neurological status, this is significant for metabolic disorder. A

> child who has typical or near typical muscle skills but becomes

> frankly ataxic upon eating a certain food, may have a " leaky form "

or

> partial defect associated with a given metabolic disorder. For

> example, children with less advanced maple syrup urine disease

(MSUD)

> can become clumsy after eating foods high in branched chain amino

> acids (generally proteins). The disorder may be more apparent under

> circumstances where there is a greater catabolic demand on the body

> such as during fasting (i.e. overnight) or infection. For this

> reason, first in the AM urine is often preferred for analysis. This

> underscores the need to collect urine samples during times of

obvious

> unbalance or muscle loss.

>

> 6. Given the proper educational, behavioral and therapeutic

> supports, children with autism are capable of learning. When

> children do not learn (or lose cognitive skills), one may first

> question whether the child is being taught appropriately. If the

> answer is " yes " or if the educational piece is corrected and the

> child still does not make progress, metabolic scrutiny is often

> appropriate. When observed together with one or more other " red

> flags, " lack of learning in autism demands scrutiny.

>

> 7. Family history: a second affected sibling cries out for

> metabolic scrutiny. I would venture to add here that families who

> have a history of miscarriage along with an affected child, should

> demand further metabolic work up in their child.

>

> 8. Unusual findings on physical examination including:

> *growth retardation or excessive growth

> *small head circumference esp. if this declines over time

> relative to over-all-size

> *significant motor dysfunction

> *atypical biochemical findings [examples include but not limited

> to low blood CO2, high blood ammonia, liver function abnormalities,

> creatine phosphokinase (CPK) abnormalities indicative of muscle

> injury, etc.. Some clinicians feel that values must be at least 2

> standard deviations from the mean in order to be significant. Most

> agree that flagged values (i.e. any value outside the normal

> reference range) warrent a repeat blood draw for validation.]

>

>

> Hi everyone,

> I've been reading thru the posts the past couple days about

labeling

> and the " mental retardation " thing. And I've also seen posts of

> members who have left this group either: (1) because they didn't

feel

> welcome or (2) because they couldn't handle the fighting amongst

> members. Just a few thoughts and questions for you:

>

> (1) I hope that this group being " mostly " devoted to apraxia can be

> welcoming to us moms whose kids are multi-dimensional in their

> issues. (Mine being dyspraxic, apraxic, low tone and possibly

ADP.)

> Otherwise the description of the group should say that this group

is

> only for apraxic kids with no other issues. After all we've been

> through I can't handle any more rejection (and I can't imagine that

> any of the members of this board would do that as you've already

been

> helpful to us the past couple weeks!)

>

> (2) Given my son's issues .... we are just not sure whether there

is

> any sort of cognitive impairment. He's a mystery to us and

everyone

> else. He's consistently inconsistent? (Anyone have any thoughts

on

> that?)

>

> (3) After reading the most recent report written by my son's EI OT

> and EI PT (who work at the same place and see Owen back to

back)....

> I challenged the OT as to why he showed Owen still at an 18 month

> level in his fine motor and why he had goals in his report all

> as " unmet " and goals that he didn't discuss with me (eating more

> vegetables? beginning to potty train?) He couldn't really answer

me

> except to say, " There's only so much I can do with your cognitively

> impaired child. " So my question to all of you amazing, advocating

> moms is.....what would you do with that? (We are already on the

side

> taking steps with regards to seeing a pediatric neurologist,

> bloodwork, MRI, check for lead and mercury, etc.)

>

> I knew that the comment was possible only the beginning. And made

me

> feel like I'm standing in the gap between reality and hope....

>

> Warmly,

>

> Mom of Owen, 33 months

>

[Guest guest]

Are you otherwise happy with that therapist? Because I think that he

was wrong on two counts (a.) " there's only so much I can do... " --

aim higher, man! To me that sounds like he's not even trying to help

your son meet his goals, let alone exceed them. and

(b.) " cognitively impaired " -- that's not his place to label your

child that way. He has no idea if that is true or not. His failure

to help your son meet his goals is no reason to blame the patient.

Maybe they just aren't a good fit with each other. When the goals

were set, they were probably very reasonable. Has he changed his

opinion on that?

My son was marked down on his EI evaluation when he was 2-3/4

because he couldn't properly label some pictures. (e.g. He

said " ma " when the acceptable answer was " woman " or " lady " .) The

reason he couldn't label them was because he couldn't say those

words! So his cognitive scores were low and they wanted to put him

in a self-contained special ed. preschool. I fought for the

integrated preschool, and he thrived there. By the second year

there, they were able to test his IQ and it was in the SUPERIOR range

for non-verbal, and ABOVE AVERAGE in the verbal (missed SUPERIOR

there by a point). And he couldn't potty train until nearly four

because of his low tone (related to his apraxia) and also some

digestive issues.

What I'm saying is that at 33 months old with apraxia, it is very

very very very hard to determine what all the issues are. As you

make progress in one area, you might uncover another. It is vitally

important that you surround your child with therapists and teachers

that have a " can do " attitude. They have to want your child to

achieve as much as you do, and they have to be willing to figure out

a way to make it happen. That is so hard to find! But in the

meantime, you need to straighten that OT out and tell him to stop

with the limitations and try harder and to give you more work to do

at home (no matter how much he gives you now) so that progress can be

made.

in NJ

P.S. Your son sounds like my son at that age. And he's doing great

at 5-1/2 years old.

>

> Hi everyone,

> I've been reading thru the posts the past couple days about

labeling

> and the " mental retardation " thing. And I've also seen posts of

> members who have left this group either: (1) because they didn't

feel

> welcome or (2) because they couldn't handle the fighting amongst

> members. Just a few thoughts and questions for you:

>

> (1) I hope that this group being " mostly " devoted to apraxia can be

> welcoming to us moms whose kids are multi-dimensional in their

> issues. (Mine being dyspraxic, apraxic, low tone and possibly

ADP.)

> Otherwise the description of the group should say that this group

is

> only for apraxic kids with no other issues. After all we've been

> through I can't handle any more rejection (and I can't imagine that

> any of the members of this board would do that as you've already

been

> helpful to us the past couple weeks!)

>

> (2) Given my son's issues .... we are just not sure whether there

is

> any sort of cognitive impairment. He's a mystery to us and

everyone

> else. He's consistently inconsistent? (Anyone have any thoughts

on

> that?)

>

> (3) After reading the most recent report written by my son's EI OT

> and EI PT (who work at the same place and see Owen back to

back)....

> I challenged the OT as to why he showed Owen still at an 18 month

> level in his fine motor and why he had goals in his report all

> as " unmet " and goals that he didn't discuss with me (eating more

> vegetables? beginning to potty train?) He couldn't really answer

me

> except to say, " There's only so much I can do with your cognitively

> impaired child. " So my question to all of you amazing, advocating

> moms is.....what would you do with that? (We are already on the

side

> taking steps with regards to seeing a pediatric neurologist,

> bloodwork, MRI, check for lead and mercury, etc.)

>

> I knew that the comment was possible only the beginning. And made

me

> feel like I'm standing in the gap between reality and hope....

>

> Warmly,

>

> Mom of Owen, 33 months

>