Re: Hard to Handle

[Guest guest]

Hi Audrey!

I am just a mom, not an SLP, MD or anything else - just a mom who has been going

through the ins and outs of Dyspraxia for 2 years now. Here is my opinion.

(now 4 years old) was starting to have major " meltdowns " and

uncontrollable behavior when he turned 3 1/2. He was difficult to work with,

and his anxiety went through the roof.(He was essentially still non-verbal) His

Doctors and therpist suggested Zoloft or Valium - I knew that is not what he

needed. I started him on Pro EFA and not only noticed a difference in him

vocally, but in his behavior as well. His anxiety level went way down and he

seemed to become my " sweet little boy " again. Another thing I noticed is that

he wanted to communicate more. He tried harder. He would say the word or

phrase over and over and over again until we repeated it to him so he KNEW we

understood him. He seemed to become less adaptive and not easy going anymore -

but in hindsight I see it differently. He WANTED to communicate and was so

determined, that when I (for example) would tell him to get in his car seat, it

was time to go home - instead of cooperating (because he did not know how to

tell me he didn't really want to go, so he just would give in and go) he would

" rebel. " He did it because he COULD - he found his voice. He may not have

known all the right words, but he would let me know one way or another. Another

thing is he thought if he communicated something verbally to me - that meant he

got to do it- no matter what. When he wasn't (couldn't) talk, when he would say

something, no matter what it was, he would get it as a reward for vocally trying

to talk.

Something else I noticed is that he seems to be slightly " behind " his peers.

is now 4 years old and in a 3 year old preschool class. He fits

perfectly there. Because he could not talk early on, he didn't socialize much.

Therefore when he was 3 to 3 1/2 years he seemed to start going through his

terrible 2's - because that is when he started communicating. They call it the

terrible two's because that is when the child is starting to become vocal and

communicate and he wants things his/her way, and since he can communicate that

he/she expects it to happen. (What " I " say, goes!). Well, for our children who

are late in talking and communicating, it makes since for this to happen a

little later.

is still on Pro EFA and doing great. He is talking ALL the time, and we

are working on articulation. It is important to remember that every child is an

individual, and you as his parent knows him better than ANYONE. Trust your

instincts and follow your heart. If you think the EFA's are not working in his

favor, then by all means stop. But, this may be one of the many transitions

your son will go through as his communication skills increase. Just as many

people talk about their children stuttering more - this may be due to the fact

that they are trying to say more, and want to say more faster than they can

motor plan it.

I hope I haven't totally confused everyone out there - this is hard to put down

on paper. Remember - I am just a mom and sharing my opinions. I hope this

helps!!

Carnell

North Carolina

www.verbaldyspraxia.com

CHERAB Outreach Coordinator

[ ] Hard to handle

Hello Everyone,

My son is 3 yrs 5 months, is dyspraxic (diagnosed by a developmental

pedicatrician), has mild hypotonia, and has (had?) sensory integration

issues but never to a great degree and I think he's overcome them.

Mostly the dyspraxia manifests itself with speech (only started talking

in earnest two months ago) and fine motor skills. He was a fussy infant,

but since toddlerhood, has always amenable and easy-going, eager to go

places, easy around the house, not demanding. Since April, he has been

in a preschool program for kids with special needs in our public school

district. He loves it and has from the start. I should add that his

(private) speech therapist is not convinced that he is dyspraxic and

thinks he can be mainstreamed next year (wow, wouldn't that be great,

but he really does seem to have motor planning issues and seems to fit

the profile).

Two behavioral changes have cropped up and I'm wondering if they're just

a sign of growing independence/sense of self or if they're related to

the fact we've been giving him ProEFA since mid-August (actually, " Think

EFA Jr " for 4 weeks and " ProEFA " after that).

1) For a few weeks now, my son hasn't been amenable -- for example, he

won't get into his car seat when leaving a place to go home. He'll just

dawdle in the back seat. If we're walking somewhere, he will crouch down

and not walk with me. He'll cry the whole way home, saying " no this

way, " to indicate he doesn't want me to drive us home. This has never

been the case before. I stress he has always been easy-going, and

certainly easy to sway with a little parental ingenuity.

2) For a few weeks now, my son has had little fits, for lack of a better

word. For instance, he'll loves to use the computer (learning CD-ROMs),

and when it's lunch time, he is clearly eager to eat, but he insists on

bringing his lunch to the computer, which I would not allow. I explain

that he can go back to the computer as soon as he finishes his lunch,

but that has no impact on him. He gets into a little fit when I set

limits. Also, he seems to not be able to satisfy his wants when given

the opportunity. During one of these " fits, " if he says he wants to

watch a video, we'll go to the VCR, and (he must do everything himself)

he'll hold a tape but won't insert it, crying the whole time. It makes

no sense to me. The other day, he didn't want to take a bath (never a

problem before). He stood the whole time, ranting, and then after the

bath, he wouldn't leave the empty bathtub! I was kind of freaked out. He

cried for 20 mintues. Didn't want to be dried off or anything.

Again, I'm wondering if the EFA supplementation could have this kind of

effect on a kid. Or is it a parenting problem (be honest)? I'm very

patient with him and my husband too. My son gets a lot of my attention

from us. Ours is not a volatile household. Our day-to-day is quiet and

relatively non-harried. This is my first child so I don't have anything

to compare it to.

Please offer any advice/comments. Thank you.

Audrey

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[Guest guest]

" Two behavioral changes have cropped up and I'm wondering if they're

just

a sign of growing independence/sense of self or if they're related to

the fact we've been giving him ProEFA since mid-August (actually, " Think

EFA Jr " for 4 weeks and " ProEFA " after that). "

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

Although I can't speak regarding the EFAs as we haven't started to use

them yet, I can say that our son is doing very similar things. He is 2

years 10 months and started a preschool program about a month ago. He

fusses a lot now and gets mad when we say no and wants to hit or throw

down his toy or video, etc. Maybe it is a combination of reaching a

frustration threshold that our kids sometimes reach and/or typical

toddler behavior that surfaces as they acquire more independence.

What I mean about " frustration thresholds " is this:

Our EI therapist had told us that we would reach periods when Bryce

would become very frustrated - primarily because as he would gain the

ability to communicate (whether it be via pictures, signing, language or

combinations of both), he would become cognizant that there was a whole

lot more in the world that he wanted to know about or experience but

wouldn't know how to so at first.

Bryce is already becoming much more independent after only a few weeks

of being with the other children - so for us, it appears that Bryce

finally wants to explore the world in ways he has not before but is

frustrated by it at the same time. We are working hard to continue to

expand his picture communication system, using more signs, using tactile

cueing, and giving tons of hugs!

We have been told that the timeframe for these frustration periods

varies by child and can be very short term or may continue for a couple

of months - sometimes marked with little additional speech progress.

Then, in some cases, there is another leap in skills as the frustration

subsides.

I would just continue to be supportive, provide him as many mediums as

possible to communicate his needs, and be loving and firm as you would

with any toddler.

Good luck and let me know how you are doing!

Take care,

Debbie

Mom to Jay - 15, on - 5, and Bryce - 2.10 (verbal dyspraxia,

hypotonia, mild SID)

[Guest guest]

I had to laugh in recognition of your frustration -- your description sounds

like you could be talking about my own son! Kids this age often don't make

sense -- we just have to go along with the ride, give them chances to

exercise their independence, set limits when they are appropriate and not

just a needless assertion of control, and wait it out. I understand this

stage comes back at around age 13-14 with much more negative verbalization!

Having parented a typically developing child first and volunteered in a lot

of preschool classrooms, I am confident that this is just a late-arriving

" terrible-two " - " I-insist-on-being-independent " stage compounded by the

delayed ability to communicate his independence to the world in ways other

than acting out. The first time I went through it I found that a judicious

mixture of appropriate consequences and ignoring him seemed to work pretty

well, so I am trying that again this time. I try to decide if the behavior

is a dangerous/truly inappropriate behavior that requires firm nonnegotiable

consequences or just an annoying/time-consuming one that might best be

ignored or might be susceptible to distraction. I would also make sure he

is getting enough sleep -- kids' sleep needs will change as their activity

level changes. If he has stopped napping, maybe he really needs that extra

rest but refuses to get it (our problem at the moment.) Don't wear yourself

out trying to appease him every time he is like that -- they don't know why

they are upset but they aren't going to let you off easy, and part of this

stage is about them learning how to pull themselves together.

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[Guest guest]

Have you talked to an Occupational Therapist about this. From what

I understand about kids with sensory integration problems, this type

of behavior is fairly common. Somehow they get overstimulated and

can't handle activities that they use to handle.

Also, has his sleep patterned changed? What about allergies? Is he

allergic? Allergies can make kids act strange.

Good luck!

Suzi

[Guest guest]

Audrey,

Another afirmation ... my son is 3 and was always happy and

easy going, he is not on EFAs and is apraxic. He is not yet <really>

verbal, though we do have a handful of spontaneous words.

6 months ago started his 'tantrums'. Like others who replied,

they seem to stem from frustration and overload. Also with us, they

seem to correspond to growth or development spurts -- or the

increased awareness of not being able to get his message across. In

our house, he generally saves them for me -- but I am also his prime

communicator. My husband thought I was exaggerating until he was

home during one of them.

Some suggestions that have worked for us -- we tell what he's

going to do during " transitions " many times (after the show is over

we are going upstairs to bed-first brush teeth, then diaper/pajamas,

then story, songs, and under the covers). seriously objects

when things are done TO him instead of WITH him. It is hard because

of the non-verbal, so the repeated patter of what will happen helps.

We also make up songs (the on the bus waves bye-bye to

Mommy...) which has helped with compliance.

Margaret...'s Mom

[Guest guest]

My daughter also rebelled after she started talking. At first she

got just about whatever she wanted if she asked for it. About 6

months ago, she finally said " I want bubble gum " . It was the first

time she used a complete sentence to say that she wanted bubble

gum. Well, she got bubble gum. She started saying " I want

cookies " . She got it. etc, etc. I just kept on giving her the

rewards for talking.

Now, I'm starting to say no, and we have had a few meltdowns. I try

to warn her beforehand that she will not be getting bubble gum or

cookies or soda or whatever, but sometimes I cannot be prepared. We

had one meltdown at a restaurant when she wanted soda. She asked

nicely, but I said no. She screamed and kicked for 1/2 hour outside

of the restaurant. (I couldn't even move her to the car she was

kicking so hard.)

After reading some of the other comments, I'm thinking it just must

be a hard transition for a 3 or 4 year old to go through. To put it

bluntly, it is a lot easier to pick up a screaming 2 year old and

put them in their room or car. When my 4 year old daughter does it

now, I can't even pick her up. She weighs 45 pounds. She is also

strong now.

Anyway, just some rambling thoughts.

Take care,

Suzi

>

>

> Something else I noticed is that he seems to be slightly " behind "

his peers. is now 4 years old and in a 3 year old preschool

class. He fits perfectly there. Because he could not talk early

on, he didn't socialize much. Therefore when he was 3 to 3 1/2

years he seemed to start going through his terrible 2's - because

that is when he started communicating. They call it the terrible

two's because that is when the child is starting to become vocal and

communicate and he wants things his/her way, and since he can

communicate that he/she expects it to happen. (What " I " say,

goes!). Well, for our children who are late in talking and

communicating, it makes since for this to happen a little later.

>

[Guest guest]

Does anyone know a speech therapist in the southern connecticut area familiar

with autism and apraxia.

thanks

crystal sacco

also if anyone knows how to find one that accepts medicaid it would be

greatly appreciated i have looked EVERYWHERE and cant find one.

[Guest guest]

Suzi makes an excellent point about allergies affecting how some

children act. I have observed that for some children in therapy,

allergies have a VERY serious effect on their behavior.

, CCC-SLP

[Guest guest]

While I was searching for the article Dr. Katz faxed me about EFAs from

yesterday's Daily Mail that he read on the plane, I came across this one from

last year...hey sounds familiar!! Maybe some good advice that may help with the

frustrations of any child learning to talk.

From a UK paper children's health 05/12/00

http://www.femail.co.uk/pages/standard/article.html?

in_article_id=4133 & in_page_id=171

New autistic language scheme

by DIANA APPLEYARD, Daily Mail

Six-year-old Leese is a beautiful boy but also severely

autistic. Until a month ago, he had virtually no speech, and his

life - and that of his parents, and - was dominated by

violent tantrums.

Yet after just a few weeks with an extraordinary new technique,

is communicating for the first time. He is using a revolutionary new

language scheme called the Picture Exchange Communication System

(PECS), which aims to teach autistic children the crucial ability of

how to take control of their own language. Here tells their

story.

finds language very confusing. Until recently, as far as he was

concerned, he spoke English and I spoke an incomprehensible foreign

language.

He had no idea what I was saying, so it was almost impossible to get

him to understand what we wanted him to do, and why. He became

incredibly frustrated because he couldn't make us understand what he

wanted.

Like all autistic children - who have varying degrees of difficulty

in the way their brain processes information from the world around

them - he couldn't make any sense of the things he saw and heard. It

was much easier for him to retreat into an almost silent world of his

own.

We communicated on a very basic level because he had only a handful

of words. If he didn't want to go somewhere he would shout 'No,no,no'

over and over again, or he would just lie on the floor and scream.

and I had learned to try to interpret what he wanted by his

eye movements, or by physical gestures, but often much of it was

guesswork, with me holding things up while he became more frustrated

and angry.

In the early stages of PECS, a child learns to exchange a single

picture for something they really want, such as a drink or biscuit.

With PECS, can initiate what he wants, rather than me having to

make constant suggestions to him.

Looking back over his first year, there were telltale signs.

slept constantly and he made almost no demands on us. I realise now

this was because he had no idea what was going on around him and he

was already retreating into a silent world of his own. Because he was

our first baby, we had no idea what to expect, so we didn't pick up

on the obvious signs. He wouldn't play with us, he made very little

eye contact and he really didn't like lots of toys around him because

they invaded his personal space.

When he was almost three, I took him to Tumble Tots and a playgroup

with music classes. But he hated everything. Of course, I now know it

was because none of it made any sense to him and he was baffled and

frightened by all the noise, colour and people jumping around. He

simply didn't understand how to interact.

His only language was a mumbled 'Mummy', 'Daddy' or 'no', and he used

those only rarely. He made noises but they were mostly

unintelligible, odd sounds which drew lots of strange looks when we

were out together. He also threw awful temper tantrums. He would

throw himself to the floor in the supermarket, shouting and screaming

and kicking if we didn't go the way he wanted.

and I coped, but it was hell. stopped sleeping at night

and one of us had to keep watch on him because he would do the most

awful things - tear down the curtains, swing on the light fittings,

rip up the carpet or wee all over the place. And he would just scream

and scream. and I had to sleep in shifts. We tried to control

him by hugging him, reassuring him we were there, but very little

made a difference. He was like a caged animal.

Eventually our doctor sent us to a clinical psychologist at Great

Ormond Street Hospital who, after several meetings, sat us down and

said: 'I think is autistic.' In a way, it was a relief to

finally know that there was a problem.

I survived those months after the diagnosis primarily because we

found a wonderful nursery which cares for autistic children.

They tried out all kinds of therapies with him, such as the Lovas

method, which depends on routines being repeated over and over again,

and a system called 'Teach', where would be encouraged to focus

on an object on a tray, such as a puzzle, and made to concentrate

solely on that one thing.

He made some progress: he learned how to sit still at a table, how to

go to the toilet on his own - but still he wasn't using intelligible

speech.

Then, last year, when he was five, we were very fortunate to get him

into a school for autistic children. The structure and routine of the

day there had an immediate effect of settling him down because they

give him so much one-to-one attention.

There are six children in 's class, with one teacher and two

qualified helpers. A normal day mirrors that of a school, with

English, maths, science and PE lessons, but on a much simpler level.

The children learn the alphabet and how to count, as well as social

skills such as sitting still and eating with a knife and fork. But

the greatest improvement to date, without doubt, has come with the

introduction of PECS.

's biggest problem was that he couldn't communicate using

language. He could make sounds and mumble words, but he had no idea

what they meant.

With PECS, a child learns to exchange a picture for something they

really want. Gradually they get to choose from an increasing range of

pictures stored in a special 'communication' folder.

The pictures are simple line drawings of, say, a child drinking from

a cup. These are attached to the folder with Velcro, so can take

out the picture and hand it to me. So if he wants a drink, he

unsticks this picture and gives it to me.

What is so crucial is the fact that he is taking charge. For the

first time in his life he can let me know what he wants.

At the moment we're working with single words so, for example, he has

a picture of a cup with the word 'cup' written underneath, to

encourage his reading skills. When he gives it to me, I say the word,

too, so he will associate the object with the word in his mind.

Originally the system was invented simply to give autistic children

the power to communicate non-verbally, but what is so amazing about

the cards is that they also have the effect of making them say the

word, too.

Being at the school and working with PECS has made much more

mature and he is calmer and seems happier in himself. He also sleeps

through the night now, which is a huge bonus.

But perhaps what is most miraculous of all is that he is beginning to

say a few words.

The real turning point came for us when we were on holiday recently

in France. As an aeroplane flew quite close overhead, suddenly

took my hand and said: 'Look!' That really was a pivotal moment for

us - I nearly burst into tears. For the first time, he demonstrated

to me that he was taking notice of the world around him. He actually

knew what the word meant and the reaction it would get from me.

PECS has given us some light at the end of a very long, dark tunnel.

WHAT IS PECS?

Brain scans have revealed that the brain stem of autistic people is

shorter than normal. There is effectively a 'gap', like a band of

tissue, missing. The brain stem of a person with autism lacks

something called the 'superior olive', which is effectively a relay

station which makes sense of what we see and hear.

Children with autism have problems processing the information about

them, and tend not to understand the need for communication. One of

the earliest signs of autism in a very young child is that they do

not point, and they often fail to make eye contact. They have an

inability to retrieve information in a flexible way, which can lead

to rigid and repetitive patterns of thought, which often manifest

themselves in obsessive, repetitive behaviour.

They can also have problems storing memories, so they tend not

to 'learn' from experiences and to exist in the present.

PECS was first developed in Delaware in America and was only recently

brought over to this country. But its popularity is expanding

rapidly.

The system works through a series of symbols that are kept in a

folder. When the child wants something, they have physically to

approach an adult and hand over the symbol, which has the word

printed underneath.

Using visual symbols they can see and touch in the PECS system gives

them a much greater understanding of what an object actually is, and

what the spoken word means. It also forces them to initiate

communication, by physically taking the symbol to their parent or

teacher, to be rewarded with what they want.

Gradually they build these symbols into whole sentences.

The most exciting by-product of PECS is that, by increasing

interaction using the symbols, children start to say the words

themselves. The first study done in America showed that three-

quarters of pre-school children using PECS began to talk themselves.

=====

[Guest guest]

My daughter just turned 3 and also just started preschool for the first

time. It is a private/regular preschool and she is given a lot more

independance in choosing activites than she has been used too. She is also

becoming a little more verbal, finally learned to say " na " for no and

learned to shake her head back and forth. So now everything is no...I also

feel she is going through the " terrible 2 " stage just a year late. (in a 2yr

class in preschool) She still is pretty good, but she was PERFECT until

recently when she has started exerting herself. She has been on ProEFA for a

while and it hasn't made any differences in behaviour...not sure if any in

speech either. I agree with whoever said it is just that stage that most

kids go through, maybe just a little later than other kids.

Hannah

[Guest guest]

Thank you everyone responding to hard to handle, I am going to take advices

and knowing that my kids weren't bad as a 2 yr old, but they are starting to

come out of their shell in the independence stage of life at 4yr. old.

THANKs. Joya

[Guest guest]

My son is alot like yours and the only thing that I can say that has worked

for me is to tell him about 10 or 15 minutes what you're going to do and then

remind him again and finally tell him OK it is time to eat or whatever. I

have found that the more notice he has the better he seems to be able to

change from one activity to another. He does very good as long as what we are

doing is no surprises.He has gotten better but still has some issues.here's a

recent one.Last week the transformer blew out and so all of our electric was

out for about an hour, until the electric company got there.It was still

light out and he went off.I am not exaggerating when I say shrieked bloody

murder that he wanted to go upstairs and be sure the cat was OK but didn't

want to go upstairs in the dark,which it wasn't.He went on and on about no TV

ect.I think most of this was because it just happened. Anyway,you are not

alone.Gretchen mother to age 61/2.