Re: 3 1/2 year old

[Guest guest]

Yes my son sounds very similar to your daughter. he had terrible difficukty

latching on when I tried to nurse him as a newborn and I had to supplement him

with formula in a bottle. Theree were days when I tried to nurse for over an

hour trying to get him to latch on properly but to no avail. I consequently made

the decision to switch to bottle feedings only at about 3 weeks into it. Braydon

was not considerably delayed in any milestones except that because he was always

big for his age it took him a while to learn to sit up and roll over. He crawled

for a couple of months before walking unaided at 14 months which is average. He

did not have the benchmark number of words at 18 mos so that was when we new

there was something amiss. He is very delayed in speech and language and his

fine motor control is affected. The socalled professionals say his receptive

speech is way behind but I beg to differ. he understands and has understood very

complex instructions from a very young

age and catches on to new words and skills quite quickly. We have not been able

to toilet train him successfully yet and he is 4.6 years old. We think he lacks

motor control to hold it. By the time we get him to the bathroom to try the

potty it's too late. He has an extremely hypersensitive gag reflex and is a very

fussy eater. Braydon now mimics two to three word phrases but a year ago he was

unable to correctly mimic even one word. He also is able to communicate very

effectively and is a sociable happy child who we have been told is also a very

beautiful child. He has been getting speech and OT and has made wonderful

progress so far. We also feel that Braydon is quite intelligent but that his

severe speech and language delay is holding him back big time. We are confident

that with a lot of work he will be able to be understood almost 100% of the

time.

He has some minor sensory issues including mild tactile issues and auditory

sensory problems(certain sounds make him upset). We feel that Braydon has been a

gift and that his having apraxia is not a death sentence but just an issue that

we will deal with in a positive way and to do everything in our power to help

him be the very best he can be to the best of his ability. We have experienced

in the past two years that some so-called experts do not know everything. Last

year some quack of a psychologist after one 1 and a 1/12 hour assessment decided

that Braydon has Global developmental Delays due to the test results even though

she noted his and I quote " oral-motor speech difficulties. " Braydon does not

asses well and he always appears to be lower in intelligence than he really is.

When he was assessed he did not have nearly the number of words and sounds he

has now. Any way I know it may be hard now but try not to get too overwrought

with a possible apraxia Dx. If the

assessments for your daughter conclude that Speech and OT is recommended it

will be very beneficial for her as I have read that children with oral motor

speech disorders do very well with the correct intervention. my son is a case in

point he has come a very long way in just a few months of speech therapy.

egt2644 <egt2644@...> wrote:

We are not new to our daughter having delays..she was a poor sucker

at birth and needed fed with a syringe,posture was " slumpy " and

rolled over,stood,walked and is now a " late talker "

She is physically a very beautiful and social child. We get comments

daily from strangers telling us how beautiful she is.

She seems very intelligent and " talks " with some words, gestures and

gets her points across. She loves to try to repeat and mimic what we

say but usually only one word.

We have had a mixed review if she truly has hypotonia. She has been

in speech, OT and PT for over two years through early intervention

and begun special ed preschool 4 days a week for two hours a day.

We have since found out she has a chromosone abnormality that may or

may not have anything to do with her delays. There have only been 17

reported cases ever of chromosone beign reported so who really knows

if it is important or not in the grand scheme of things.

But yet the genetist(who spent 15 minutes with our daughter and

compared her to the one research article he found on this particular

abnormality and the boy in the article had very obvious physical

characteristcs)told us she would need care the rest of her life and

would be retarded. We were floored.

We finally got into a dev. ped who asked us to read 'The Late

Talker " . We were astounded to read things that sound more like our

daughter than anything else we have been told so far. Frustrating to

know it took this long to find some hope.

We have another OT and ST eval set up by this wonderful

developemntal pediatrician. I am suspecting that our daughter will

be diagnosed with apraxia. I beleive she has some sensory issues as

well. She loves music and dancing and always has a toy or a small

object in her hand.

She has been assessed as having skills at a 2 yr level but yet she

is 3 1/2.....but she just seems " so smart " even though skills and

speech are behind.

Has anyone out there experienced anything similar? I live daily with

a large knot in my stomach on what her future holds for her.

Thank You for taking time to respond.

[Guest guest]

I know exactly how you feel. The future is sooooo scary and It breaks me down

everytime I think about it. My boy is 3 1/2 and sounds exactly like your

daughter. You would never know by looking at him that he is delayed. I have

not read the book yet but I hope to soon. Tyr the fish oils that everyone is

talking about on this website. I just started my son on them yesterday. Can't

wait to see how they work out.

Jill - WI

egt2644 <egt2644@...> wrote:

We are not new to our daughter having delays..she was a poor sucker

at birth and needed fed with a syringe,posture was " slumpy " and

rolled over,stood,walked and is now a " late talker "

She is physically a very beautiful and social child. We get comments

daily from strangers telling us how beautiful she is.

She seems very intelligent and " talks " with some words, gestures and

gets her points across. She loves to try to repeat and mimic what we

say but usually only one word.

We have had a mixed review if she truly has hypotonia. She has been

in speech, OT and PT for over two years through early intervention

and begun special ed preschool 4 days a week for two hours a day.

We have since found out she has a chromosone abnormality that may or

may not have anything to do with her delays. There have only been 17

reported cases ever of chromosone beign reported so who really knows

if it is important or not in the grand scheme of things.

But yet the genetist(who spent 15 minutes with our daughter and

compared her to the one research article he found on this particular

abnormality and the boy in the article had very obvious physical

characteristcs)told us she would need care the rest of her life and

would be retarded. We were floored.

We finally got into a dev. ped who asked us to read 'The Late

Talker " . We were astounded to read things that sound more like our

daughter than anything else we have been told so far. Frustrating to

know it took this long to find some hope.

We have another OT and ST eval set up by this wonderful

developemntal pediatrician. I am suspecting that our daughter will

be diagnosed with apraxia. I beleive she has some sensory issues as

well. She loves music and dancing and always has a toy or a small

object in her hand.

She has been assessed as having skills at a 2 yr level but yet she

is 3 1/2.....but she just seems " so smart " even though skills and

speech are behind.

Has anyone out there experienced anything similar? I live daily with

a large knot in my stomach on what her future holds for her.

Thank You for taking time to respond.

---------------------------------

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

>

> Thank you to those of you who took time to respond. I am in shock

that we are going through this and in disbeleif that a physician

could " predict " what our daughter will be like. I am not that familiar

with mental retardation but I find it difficult to beleive that anyone

can predict that in a 3 1/2 year old. Especailly when she can

bascially tell us in one or two words what comes next in a story book

we have read to her all but 5-7 times!

Thank you for your kind words and comfort. We ar elookign forward to a

more intense speech eval in 2 weeks and hope to get a more agressive

plan with a SLP. I feel that the 1 day a week 45 minutes she has been

receiving has not been helping lately.

Can anyone tell me what I should look for in a good SLP??

[Guest guest]

Hang in there! It's way to soon to make a sweeping judgment about

her future. Try the fish oils and get an SI-trained OT plus speech

therapy from an SLP who has oral-motor training. Read The Late

Talker and the Out-of-Synch Child. You'll find lots of good info on

this forum too. Sounds like you have a good dev ped at least!

Remember, you spend the most time with her so if you sense her

potential, have faith in that. You know more in this respect than

someone who spent 15 mins with her!

>

> We are not new to our daughter having delays..she was a poor

sucker

> at birth and needed fed with a syringe,posture was " slumpy " and

> rolled over,stood,walked and is now a " late talker "

> She is physically a very beautiful and social child. We get

comments

> daily from strangers telling us how beautiful she is.

> She seems very intelligent and " talks " with some words, gestures

and

> gets her points across. She loves to try to repeat and mimic what

we

> say but usually only one word.

> We have had a mixed review if she truly has hypotonia. She has

been

> in speech, OT and PT for over two years through early intervention

> and begun special ed preschool 4 days a week for two hours a day.

>

> We have since found out she has a chromosone abnormality that may

or

> may not have anything to do with her delays. There have only been

17

> reported cases ever of chromosone beign reported so who really

knows

> if it is important or not in the grand scheme of things.

> But yet the genetist(who spent 15 minutes with our daughter and

> compared her to the one research article he found on this

particular

> abnormality and the boy in the article had very obvious physical

> characteristcs)told us she would need care the rest of her life

and

> would be retarded. We were floored.

> We finally got into a dev. ped who asked us to read 'The Late

> Talker " . We were astounded to read things that sound more like our

> daughter than anything else we have been told so far. Frustrating

to

> know it took this long to find some hope.

>

> We have another OT and ST eval set up by this wonderful

> developemntal pediatrician. I am suspecting that our daughter will

> be diagnosed with apraxia. I beleive she has some sensory issues

as

> well. She loves music and dancing and always has a toy or a small

> object in her hand.

>

> She has been assessed as having skills at a 2 yr level but yet she

> is 3 1/2.....but she just seems " so smart " even though skills and

> speech are behind.

>

> Has anyone out there experienced anything similar? I live daily

with

> a large knot in my stomach on what her future holds for her.

>

> Thank You for taking time to respond.

>

[Guest guest]

Our son was born with almost no muscle tone, and it was immediately apparent

that there was something wrong. During his 2 week stay in the NICU, they

diagnosed him with Prader-Willi Syndrome. We were told that he would just sit

in front of the TV, be very quiet, and probably be mentally retarded. LOL Okay,

that is not at all the child that we have! He is a screamer, goes nonstop all

day, hits and kicks his brother when he is mad at him, is VERY smart, and is all

in all our wonderful little terror! Does he have multiple health issues, and

developmental issues? Yes. He still can't walk at 21/2, but is just beginning

to, and his is apraxic/dyspraxic, plus multiple other respiratory and health

problems.

I don't know why the doctor told us what he did. I think that he meant well,

because he was very gentle, and very concerned about our son's well-being.

Others have said to me, that frequently, doctors tell their patients the

worst-case scenario, so that they know what can happen, and in that manner, they

can try to prevent some of it. There are so many variables that affect a

child's ability to overcome his or her disabilities, that it is hard to quantify

in one statement. On the other hand, I don't know why they don't just say that

these things CAN happen, but most don't, and I agree, it is frightening to hear

as a parent. I will say that knowing our son's diagnosis does help, as we know

for the most part what some of the issues are, plus, I talk to other parents

with the same issues so that we can all problem-solve together.

Just advocate, advocate, advocate, and your daughter will grow up to be the best

she can be.

Blessings,

Kim

" The Lord bless you and keep you. "

[Guest guest]

I am very much on the same page as you. I have a 3.5 year old

daughter. She doesn't have an official diagnosis of apraxia,

although her OT and SLPs all 3 view her and treat her as apraxic and

have for over a year.

She has been in OT, PT, Speech since about 14 months old.

She is incredibly social, wonderful non-verbal communication skills

and at this point, talks a blue streak. Understanding her is

tough. We understand a lot. Others understand little.

Nobody knows the underlying reason for her problems. Like you, our

daughter has mixed comments on muscle tone. Some areas are

hypertonic and some areas hypotonic.

Her gross motor skills are advanced for her age. And yet, certain

skills have eluded her or remained difficult. Like steps. And she

still falls too often. When she falls, she falls hard.

She is a big kid for her age. REALLY big... 98%. She sat up,

rolled, crawled, walked all on the early end of normal range. For

her, quality of movement has always been the issue.

She has fine motor delays. She has some sensory issues, but not

impairing.

Her receptive speech tested low, then above average, than in normal

range and now, if tested, possibly low or in normal range again.

Nobody has said she will need care for the rest of her life. And

I'm not planning my life that way. But I know she is at greater

risk for many things in life. I know without a diagnosis of the

causes, she could ultimately have something that could hit a ceiling

or become regressive. As it is, her swallow function has regressed

over the past 2.5 years. A fact that scares me to no end.

If I think about it too long, I am in tears. But then I look at how

far she has come. How much she has proven everybody wrong. And I

hold out hope that if anybody can succeed, she can. She is truly

amazing in terms of personality, perserverance, etc. Her therapists

all think she is very bright, very strong willed and that these

factors will help her succeed long-term.

I hope they are right. But in the meantime, I make myself sick

thinking about how we are going to get through all this.

[Guest guest]

Hi,

Regarding what to look for in a good SLP, I thought I'd chime in. I don't

necessarily have all the right ideas, but a few: someone who is clearly warm

and caring and doesn't ever give the impression that it's " just a job. "

Perhaps, someone who is trained in PROMPT, which has really helped my 2 1/2 year

old. Someone who will give you " homework " assignments, but will understand that

you and your child may not always be able to get them done. For example, some

of the oral motor exercises that my son will do for the SLP during one of his

appointments, he will not try for me at home, as I am merely the mommy! No need

for him to impress me with hard work! I would also say you want someone who can

speak to you about all of your child's development, not necessarily just speech.

For example, our SLP will answer other questions I have that are perhaps more

behavior related or just parent related, but she's willing to discuss things

outside of just speech. Obviously, she's not giving advice regarding anything

health or medical, but just things that come up being a mom. Does that make

sense? Also, someone very positive who offers praise and, yet, still insists

that your daughter works hard during their time together. Just my thoughts...

hope they help. Unfortunately, some of this you will obviously not be able to

find out until you've worked with an SLP for awhile, probably. We've had a few

already, so have learned a bit along the way.

[ ] Re: 3 1/2 year old

>

> Thank you to those of you who took time to respond. I am in shock

that we are going through this and in disbeleif that a physician

could " predict " what our daughter will be like. I am not that familiar

with mental retardation but I find it difficult to beleive that anyone

can predict that in a 3 1/2 year old. Especailly when she can

bascially tell us in one or two words what comes next in a story book

we have read to her all but 5-7 times!

Thank you for your kind words and comfort. We ar elookign forward to a

more intense speech eval in 2 weeks and hope to get a more agressive

plan with a SLP. I feel that the 1 day a week 45 minutes she has been

receiving has not been helping lately.

Can anyone tell me what I should look for in a good SLP??

[Guest guest]

" She loves music and dancing and always has a toy or a small

object in her hand.

She has been assessed as having skills at a 2 yr level but yet she

is 3 1/2.....but she just seems " so smart " even though skills and

speech are behind.

Has anyone out there experienced anything similar? "

I have to say, that part sounds a lot like . She is rapidly

catching up in her speech and many other things are falling into place

as that happens. She is playing with toys appropriately, interacting

with peers more easily, slowly becoming less cautious, becoming much

more assertive and more confident. She never had gross motor delays.

She is also a physically lovely child and people are always commenting

about it.

It sounds like perhaps she is globally dyspraxic. I suspect that, with

the right mix of interventions in place, that she will blossom. I hope

that helps.

Warm regards,

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

(Rochester, NY)

Mom to , 3.1 years, Verbal Apraxia

& , 11 months

________________________________

[Guest guest]

Yes, I KNOW! One psychologist told me that was probably

globally delayed and could indeed be considered retarded. We knew then

that was completely untrue.

________________________________

From:

[mailto: ] On Behalf Of Benetta

Sent: Sunday, July 16, 2006 4:53 PM

Subject: RE: [ ] 3 1/2 year old

Thank you , anything that I can do to help anybody, I will. I have

been there and is still there. Our latetalkers are smart children who

can be classified as anything. We as parents have to advocate and take a

stand. It is like some of these doctors have to meet a Autism or mental

retardation quota.

Benetta, VERY PROUD MOM OF TWO BEUATIFUL CHILDREN, LT Pierce 3.9yrs, and

Jada 2.9yrs

>

> Wow, Benetta, what a beautiful response! :-)

>

> ________________________________

>

> From:

<mailto: %40>

________________________________

From:

<mailto: %40>

[mailto:

<mailto: %40> ] On Behalf Of Benetta

Sent: Friday, July 14, 2006 11:58 AM

<mailto: %40>

Subject: Re: [ ] 3 1/2 year old

Hi there, my name is Benetta and I am mom to a LT, Pierce who is also

31/2yrs old.

Pierce is a very handsome little boy as well and he was dx with severe

receptive/expressive language disorder about a year ago by a

neurologist. The neurologist ruled out Autism, but instructed us to have

a Fragile X test,which was negative. Maybe 5-6months after that I was

not satisfied that Pierce was making enough progress and I scheduled him

to see a developmental pediatrician who looked at Pierce's report from

the neurologist,didn't do any testing, and spent maybe 30-40mins with

Pierce told me that Pierce needs to start special ed and don't be

surprised if the school diagnoses him as being mentally retarded. Then I

asked him do he think that Pierce is mentally retarded, he said yes. I

asked him about Autism and apraxia, he said no it is something more than

that.

I took Pierce to the public school and our area to be evaluated for

special ed services, the school seem to think that Pierce just had a

language issue and had some autistic behavior, but definitely not

mentally retarded. Pierce has a label as developmentally delayed at his

special ed preschool that he goes to four days a week for two hours,

where he receives OT and ST. When Pierce got to this school he was

assessed by a occupational therapist, who said that Pierce has

difficulties with sensory processing.

Pierce is like your daughter where he likes to walk around sometomes

with small things in his hand. He doesn't care for the vacuum cleaner

too much, but that is not too out of the ordinary. Pierce

developmentally put at a 21/2yr level.

It burns me up when doctors predict the future for our children. There

is no way in the world a doctor can tell you that your 31/2yr old will

need help for the rest of her life and will be retarded. What a freaking

insult. As if you are not going through enough. If there are any doctors

on this board, are you taught any morality classes or bedside manner in

medical school? I was also told that when Pierce is 12yrs, he would be

like a 6yr old. Now how in God's name would he know this? He told me

that my son will talk but he will always be behind. Well gee thanks.

you work with your daughter, expose her to everything and anything that

she will enjoy and learn from, and you have faith that God will bring

your child through this.

Let me tell you, at 2yrs old Pierce was the poster child for Autism. He

was walking on his toes, he liked to spin anything that will spin(still

does), little to no speech,no gestures, no real desire to communicate,

horrible eye contact and attention level, didn't want to play with his

little sister at all, he did this back and forth thing with his hands.

Now at 3.9yrs he starting to verbalize so much more,his eye contact is a

little better, still has some issues with staying focus,but we are

working on those, he is potty trained with occasional accidents, he

don't do the hand thing any more, he initiates what he wants. He can

actually repeat at least three words at one time,though they don't

always come out clearly. I am greatful for the effort and progress that

he has made.

Give your daughter a little time that is whatI am doing with Pierce, you

get on the floor and play with your daughter, follow her lead and model

what ever sounds she make

you imitate and them into words. Is your daughter speaking in sentences?

Does she initiate her wants and needs? Your daughter sounds beautiful, I

believe she needs time therapy, and lots of patience and love, in which

I know that you are already giving. Hang in there.

Benetta

[Guest guest]

Sorry, I hit send prematurely. :-) Anyhow, as I was saying ... we

knew, even then, that was untrue, and her transition to preschool

testing showed that she was, at very least, above average in

intelligence. No way would the same psychologist would say that now!

has almost 400 words less than one year later and is putting 3

(sometimes 4) words together. :-) Thank you for summarizing so nicely!

Warm regards,

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

(Rochester, NY)

Mom to , 3.1 years, Verbal Apraxia

& , 11 months

________________________________

From: Oakes,

Sent: Sunday, July 16, 2006 9:33 PM

' '

Subject: RE: [ ] 3 1/2 year old

Yes, I KNOW! One psychologist told me that was probably

globally delayed and could indeed be considered retarded. We knew then

that was completely untrue.