Re: Re: Digit Span Endorsement (for Janice)

July 1, 2007

Bonnie,

Not Janice but it seems I can't shut up so here goes. If a kid has a

milk problem they usually have a problem with soy. You can test it. I

did and knew quickly. Otherwise they still have problems and then are

hooked on new foods that then have to be taken away.

Re: your son only having a speech issue. I think dyspraxia or speech

stuff related to allergies (not saying these are one in the same...still

don't have a true diagnosis just know for us it seemed like dyspraxia

and milk and soy elimination helped...you do what works in the end) is

usually not isolated and may be related to other language center

imapirment stuff (ADHD, dyslexia, frontal lobe stuff). We can never know

it all but if it were me I'd test milk involvement to be safe.

This expanded problem theory is not just mine...people with real

credentials write about it.

Also, take a look at this and you may see a relation...maybe not but it

is not just speech and motor skills and motor skill decline or a lack of

spatial awareness could come later. In fact, I think Janice's son had

what I am talking about (some of it anyway) later but not from the start.

http://www.ncld.org/index.php?option=content & task=view & id=466

Liz

http://www.ncld.org/index.php?option=content & task=view & id=466

bault123 wrote:

>Janice,

>Thanks for sharing your story. I am fairly new here (last few mos.)

>and don't know everyone's history. I truly believe that moms become

>the experts at what is ailing their chil(ren). I have been debating

>the milk issue for a few weeks. My son loves milk and it will be

>very hard on him. Do you give your son soy milk? At this point in

>time speech is the only issue that I see my son having difficulty

>with. His motor skills are great (gross & fine).

>I have a child in my class at school (I'm a sped teacher) that has

>apraxia. I fought for him this past year to get OT. The more I

>learn about apraxia, I also want him to recieve APE (adapted phys ed)

>and maybe PT (but that will be a very difficult battle for me to

>fight, but I'll do it for him). When he first came to me, I noticed

>that his torso appeared to be different than " normal " . His torso

>seems large compared to the rest of his body. His fine motor skills

>are behind (hence the need for OT). This boy is 5 yrs. old and just

>started speaking at age 4yrs. I told this boys family about this

>board and about The Late Talker book.

>I just want the best for all kids, so I'm trying to educate myself as

>much as possible. If we don't advocate for our kids who will?!

>Certainly not drs. or even school systems.

>

>Bonnie

>

July 1, 2007

Janice,

I am wondering...does your son have apraxia? hypotonia?

What were some of the warning signs?

My son has hypotonia and he is under my microscope with everything!

They questioned motor planning issues when he was 17 months, but a PT ruled

that out last week and the SLP does not see apraxia- just some articulation

issues.

He does seem to progress every week and I don't feel as overwhelmed and

worried as before but I am on guard.

Jess

On 6/29/07, Janice <jscott@...> wrote:

>

> Bonnie,

>

> I am none of those things... I am just a mom who has done all of the

> 'wrong' things until she finally discovered what works. I take my son to The

> National Association of Child Development (www.nacd.org) and they 'teach

> me' how to help him. Of course we did system therapy since he was only 2 but

> none of it worked much... Last year, I started flying my boy to NACD and

> EVERYTHING they tell me to do absolutely works... A miracle at last. Mark is

> getting better and I see the light at the end of the tunnel. He is only

> getting better because we are 'targeting' his sensory systems with an

> absolute vengence.

>

> I was slowly losing my child to dyspraxia little bits at a time, year

> after year. It started with speech and then slowly materialized in his gross

> motor and then lastly his fine motor was affected. These childhood stages

> are not recovered; you lose them forever and you can only regain them

> through extreme remediation. Mark never caught up; he just got further and

> further behind. Every doctor I saw told me he would grow out of it but they

> were just fobbing me off. I knew intuitively that there was something wrong

> with his ears but Mark passed every hearing test. I couldn't even get him in

> to an ENT because he was not sick enough under our system. The doctors just

> wanted to prescribe him Ritalin and the teachers just wanted him out of

> their classrooms. There were never enough OT's in the system for decent

> remediation and the school system puts a parent and a child with

> neuro-disorders through anguish and hell.

>

> If I only knew then what I know now, I would do everything so differently.

>

> That is why I write on this board. I don't want any child to go through

> what Mark has gone through in grades 1 to 3. I don't want any other Mom to

> go through what I went through.... a professional career lost, a marriage

> lost and a child 'almost' lost. Now, it is not that pathetic for we are

> doing well, but if I could turn back time....

>

> In January 2006, I discovered the Dyspraxia adults board and cried many

> tears after reading their stories. Not that they were aweful or anything; it

> was just then that I realized that these were adult versions of my child and

> man, were they struggling with daily basics. I was happy to see that most

> had gone to University but had a hard time with life.

>

> I began to read every neurology and childhood text I could get my hands

> on; I stayed up until 4 am many, many nights reading and researching. I

> found The Listening Program and ordered it.

>

> Through all of my reading, I began to understand how the brain makes

> neural connections; how the central nervous system works. I found a center

> that incorporates the philosophy I had chosen: NACD. I got really, really

> lucky because these people know their stuff and don't mess around. We

> started our home program last September and this June, my son is a

> completely different child. Or, should I say, he is the same child, just

> more himself. They took one look at Mark and told me to ditch the milk. I

> 'kind of' did it for about 6-7 months until I started to 'see' what it did

> to him. I was horrified.

>

> Now, I am still doing the physical therapy but am on to the third

> dimension of dyspraxia; what the heck is wrong with my child's digestive

> system?

>

> This is where I am at; I don't understand why milk products do what they

> do and it really frightens the heck out of me. I've been poisoning him for

> so long, it is amazing that he can even hear anything; I pray that I'm not

> too late to get his articulation normalized. The longer we are off of milk,

> the better his articulation becomes. I'm scared to death that I'm missing

> other allergens that are affecting his system.

>

> So..... I am like you, still learning. I know some things especially the

> physical therapy stuff (doing it for 8-9 years) and learned many things 'the

> hard way' and I would not wish those experiences on anyone particularly an

> innocent child.

>

> Dyspraxia is insidious; one day you have a basicly normal little toddler

> with a couple of speech articulation issues and the next day you have a

> completely 'full-blown' neuro-developmental disorder that is deemed

> 'incurable' and your child is written off by society.

>

> OUCH!

>

> Well, to heck with that! We are winning now!

>

> Off to the lake for the weekend everyone. Talk to you Monday....

>

> Janice

>

> ---- Original Message -----

> From: bault123

> < %40>

> Sent: Friday, June 29, 2007 1:41 PM

> Subject: [sPAM] [ ] Re: Digit Span Endorsement (for

> Janice)

>

> janice,

>

> Just curious, what is your background? Are you an " expert " b/c of

> having a child(ren) w/ apraxia? Or an SLP, Sped teacher, MD, etc? I

> think people who live w/ this, are the " real experts " .

>

> I truly appreciate your feedack. I haven't given up milk yet (I just

> know my DS will freak out), but I did just take him to the ENT

> yesterday (against primary dr thinking). DS still has negative

> pressure as he's had this past school year - I'm a sped teacher w/

> connections to a school audiologist who so nicely screened him about

> every 6 - 8 wks. The ENT said his hearing is fine (at this point),

> but he'd " be happy to con't checking him for us " !(I bet they would)

> My son loves music, we constantly read to him, he can follow multi-

> step directions, understands what we tell him, he's now speaking in

> 2 -3 word phrases and 3 - 4 word sentences (6 mos ago he had 5

> words!). I tried the fish oil supplements, but didn't really see the

> improvement that everyone else has talked about (wrong brand

> maybe?). We are so amazed at his progress so far (me more so than my

> DH, b/c he thinks he should just talk " normal " , but loves him anyway

> of course), it's only been 6 mos. since starting ST at age 24 mos..

> My son had reactions (rash) to certain baby foods as a baby, but

> nothing since then. I have asked reg. dr. about food allergies - he

> said some type of a reaction would show up immediately (rash, etc).

> They don't feel he has allergies (?). I even asked my older DD's

> asthma/allergy specialist about having my DS tested for allergies,

> they said he's too young.

>

> Thanks again,

> Bonnie

>

July 1, 2007

Thanks , I agree with everything you have said. I suppose if he was my

first I would have absolutely no idea there was something wrong! Of course,

now I compare him to my daughter ( who jumped with 2 feet at 15 months old!)

but I need to be careful that he is a different individual and will develop

differently. Of course, if there is a gross and obvious difference or

regression I will notice it.

I am curious...have you done any dietary changes besides the fish oil/vit

e? I do the oils and have been before I came to this site since I knew they

were important and lacking from our diets. I am trying to wean them off

milk since it really is for baby cows, not humans! And now the soy

issue...the estrogen like effect? It is overwhelming and perhaps the

solution is moderation?!

thanks!

Jess

On 7/1/07, bigcheech91 <bigcheech91@...> wrote:

>

> This is from , not Janice. My son is five, and my experience has

> been that you notice and worry about whatever important skill is in the

> worst shape. In the beginning, it was speech. As his speech improved

> and I started getting into the research, I noticed that the tone was

> definitely an issue. (Still is, but to a much smaller degree.) One of

> the reasons I noticed this was because I was working on an unrelated

> skill -- potty training. Well, it's ALL related.

>

> Right now, he's doing very very well, so I am focused on gross motor

> skills like swimming (no skills) and biking (can do very slowly with

> training wheels). I'm also trying to figure out normal boy behavior

> and sibling squabbles versus sensory and diet issues.

>

> When school starts, if he has trouble, I'm sure I'll be sweating

> learning to read, math, etc. My point is: each stage has new skills

> to be learned, and that's when " new " problems will pop up. As long as

> your child is improving, you are going in the right direction. Just

> maintain vigiliance even after you think it's over.

>

> in NJ

>

> >

> > Janice,

> > I am wondering...does your son have apraxia? hypotonia?

> > What were some of the warning signs?

> > My son has hypotonia and he is under my microscope with everything!

> > They questioned motor planning issues when he was 17 months, but a PT

> ruled

> > that out last week and the SLP does not see apraxia- just some

> articulation

> > issues.

> > He does seem to progress every week and I don't feel as overwhelmed

> and

> > worried as before but I am on guard.

> > Jess

> >

>

July 3, 2007

I think it is all part of the same beast. Daughter has always been one

tough cookie. Other kids always seemed like wimps compared to her.

Rarely dis she cry when injured and never did she seem to cry enough. I

have noticed in the 5 weeks without milk that her skin is more sensitive

and she initially cries when falling in ways that used to not bother

her. In fact, now that I am aware of this I tend to ask her more at

those times if she is OK. She gets embarrassed and says no...I think

because she is used to being tougher. Remember, this is the kid without

apraxia.

Then there is son...his sensitivities had always been mouth which are

lessening the longer we are off milk. He always had ear issues but never

pulled at ears which confused us (he shared that with his sister so I

had him checked more knowing that). He would hit his head and would cry

but never reach for the spot. He never pointed until age 2 and still is

not big on waving goodbye. Since being off of milk he cries less when he

hits head and points or grabs for the spot where he was injured. Yet

another form of communication we got from the milk loss in my mind. He

also shakes his head when saying no which he did not do before. I wonder

if he shared my migraine headaches that return if I cheat to test it. I

can't fully explain it but this kid is turned on and less foggy...more

and more each day. The speech is not clear as it should be and I don't

know what to do with that yet but I want to wait a little longer,

testing fsh oil on myself because iodine is an issue and see what

gfcfsf...likely ultimately the specific carbohydrate diet, as much

variety in food as we can get, exercise and time do.

Then there is me. I have had numbness issues throughout the years, got

them checked out to no avail. Off milk, that is gone and the cold

sensitivity is about 85% gone.

I know this is a big statement from someone with no expertise so take

from it what you will. My belief (had I not seen things in myself too I

am not sure I'd say this) is that if casein is like an opiate to people

like us then a number of things are possible nervous system wise.

Numbness, oversensitivity (the tag thing, too much pain, headaches,

cold/heat sensitivity) and all the rest. I believe it is not always the

case of a doctor not listening but no one thinks milk when all of this

can be atrributed to so many other causes. I never would have suspected

milk was a problem for my daughter. The sensitivity issue and the

factthat she is so irritable when she goes back on it tell me that it is

a problem for her. My son's poop and initial problems with it were an

easier sign. I have the benefit of the problem too so I can guess what

is going on with them that they cannot tell me. The vitamin intake labs

and a dr. confirming it after the fact make me know that for my family

this is an issue.

If anyone wants to know, my milk issue was not obvious either. It

becomes more obvious as time goes on. The lack of bowel issues is huge.

Returning to milk gives me swollen glands (slight but I am more

sensitive now so I get it) and the feeling that I'll get a cold but it

does not materialize. My kids and I do not get sick all the time (though

they were this winter...I thought it was gym class...it was but they

were less prepared to handle the germs due to the milk allergy I think).

If I had to guess we'd all likely show up, at best, intolerant, in an

allergy test.

Take it for what you will.

Liz

Janice wrote:

>I want to correct this....

>

>I said that the hypotonia is key.... I'm not sure about this.

>

>If I really think about it, there is something 'numbing' my child's

sensitivity; in the ears, in the hands, in the mouth. Is it the milk? Could it

be? I am not sure. All I know is that the longer we stay away from it, the

better his sensitivity gets.

>

>When I started doing deep pressure, searching for Mark's pain threshold last

September, the kid could not 'feel' much of anything. I was astonished to

realize this. After all, he was 11 at the time and had been through years and

years of therapy without this ever coming up. It was only when the gang at NACD

had me do deep pressure and jotted down on his neurodevelopmental chart that he

had little response to pain that I became aware of it. Gee, I thought I knew my

child pretty well but apparently a lot of things had escaped my notice.

>

>But that, in essence is what I see, a skewing of his sensation. Sometimes he

covers his ears to a loud noise which most of us is tolerable but to him is

grandoise. On the other end, it's as though the sensory nerves on his mouth,

face, jaw, hands and feet are 'dulled'. He could never 'feel' the drool on his

face. For years, he couldn't hear properly (unknown by me). Someone on this

board once called it " peekaboo " hearing and thats exactly what I think it is.

Sometimes the child hears fine and at other times, the hearing just goes on a

downward spiral. It's good enough to survive but not good enough to really

develop properly and truly understand what the heck is going on in complex

situations. But the lack of sensation in his hands was really an eye-opener!

It is probably the hardest element of dyspraxia to overcome. Everything else

we've made really good strides in but this one area is lagging behind. Also,

kids with fine motor issues are really good at getting the people

> around them to 'do for them' the complex jobs that require good tactility and

so that area doesn't get as much work as it should.

>

>So.... Parents out there.... work with those little hands and get them

manipulating objects. Massage those fingers with vigor and ensure that your

child can 'feel' if you slowly squeeze that finger tip (getting progressively

firmer until the child pulls away) with what should be a painful touch. If not,

then you need to begin deep pressure on those hands every single day and get the

sense of touch restored.

>

>Toss in hypotonia and you also have a 'weak' body, incapable of holding itself

up with strength and vigor.

>

>I will always be trying to 'figure out' this disorder I think. It is so

multi-dimensional and effects every area of who your child is. I realize that

Mark is indeed much better but I still don't trust the 'sneakiness' of

dyspraxia.

>

>Anyway, I could 'spout off' in a million different directions and talk

'forever' about dyspraxia but it is late and tomorrow I must get ready to go to

Utah to NACD (Wednesday). They are having a huge weekend with free seminars and

such. I should post tomorrow and get some ideas of questions that I should ask

for all of my friends on this board. (Remember this is therapy stuff, not

biomed.) Though I will be going to a seminar held by their Nutritionist, the

focus will be on exercises to target neural pathway development. Mark will get

his normal evaluation plus an additional evaluation from the speech therapist

because I want to push for an additional speech component to our program to rid

ourselves from the slight articulation issue that still remains as an

impediment. All my reading on neurology suggests that the language centers of

the brain undergo a major pruning at about the age of 12-13 so our time could be

limited in this regard. eeek!

>

>See you tomorrow my friends,

>

>Janice

>

> [sPAM] [ ] Re: Digit Span Endorsement (for

> > Janice)

> >

> > janice,

> >

> > Just curious, what is your background? Are you an " expert " b/c of

> > having a child(ren) w/ apraxia? Or an SLP, Sped teacher, MD, etc? I

> > think people who live w/ this, are the " real experts " .

> >

> > I truly appreciate your feedack. I haven't given up milk yet (I just

> > know my DS will freak out), but I did just take him to the ENT

> > yesterday (against primary dr thinking). DS still has negative

> > pressure as he's had this past school year - I'm a sped teacher w/

> > connections to a school audiologist who so nicely screened him about

> > every 6 - 8 wks. The ENT said his hearing is fine (at this point),

> > but he'd " be happy to con't checking him for us " !(I bet they would)

> > My son loves music, we constantly read to him, he can follow multi-

> > step directions, understands what we tell him, he's now speaking in

> > 2 -3 word phrases and 3 - 4 word sentences (6 mos ago he had 5

> > words!). I tried the fish oil supplements, but didn't really see the

> > improvement that everyone else has talked about (wrong brand

> > maybe?). We are so amazed at his progress so far (me more so than my

> > DH, b/c he thinks he should just talk " normal " , but loves him anyway

> > of course), it's only been 6 mos. since starting ST at age 24 mos..

> > My son had reactions (rash) to certain baby foods as a baby, but

> > nothing since then. I have asked reg. dr. about food allergies - he

> > said some type of a reaction would show up immediately (rash, etc).

> > They don't feel he has allergies (?). I even asked my older DD's

> > asthma/allergy specialist about having my DS tested for allergies,

> > they said he's too young.

> >

> > Thanks again,

> > Bonnie

> >

July 3, 2007

About the pruning...just a ray of hope here...with all the frontal lobe

stuff talking about growth until age 25, you may have more time than you

think. Even if I am wrong sometimes you need something to hang onto like

that when you feel you are running out of time. I read a book, No Such

Thing as a Bad Day by Hamilton Jordan. The guy beat three types of

cancer. He used conventional treatments but researched to find what was

best for him and then did otherstuff to help himself by drinking green

tea. He later found out he was drinking the wrong kind. He said it still

gave him peace at the time so maybe it ws not so wrong after all.