Re: Please Give Me Hope!

[Guest guest]

All children with DS are different, although there are some

characteristics that seem to be similar, so it's hard to generalize. I

can tell you about my experience with our daughter (who will be 14 next

week!) and the other children with DS we associate with.

Our daughter had feeding issues as a baby, and had suck/swallow issues

with breastfeeding and the bottle(s), but eventually got that worked

out. She has always eaten solid food, pretty much on the same schedule

as I introduced it to our typical children (individual foods pureed,

then chunkier, then little bits on the high chair tray, then the spoon,

etc.) She has never had any significant food problems, except for a

milk allergy that she outgrew by age 5. What happens when your daughter

tries to eat food besides baby food and yogurt? Are there sensory or

other issues that prevent her from chewing, tolerating different

textures, etc? We have friends whose son has Asbergers and wouldn't eat

anything besides baby food, yogurt and pudding, but after some intensive

therapy by a feeding specialist, he's now eating fairly normally. So,

even if there are reasons she can't/won't eat other foods, it is likely

that this is not a life-long issue. Just like typical kids, our kids

can have " picky " food issues, but from my experience, the children with

DS we know all eat normally. Has a medical specialist made sure there

isn't any reason she might not be eating other foods? I know that many

of our kiddos have big tonsils, and my daughter had hers out at age 4

(along with partial adenoids, and ear tubes placed) so maybe this could

be an issue?

Our daughter didn't walk until just after age 3. Like your daughter,

she had been cruising for a long time, and would take 2-3 steps " to " a

person or the couch, and would walk along with 2 hands held. No one

could figure out why she wouldn't just walk because physically it was

all there. One day, she was sitting in the middle of the family room,

and she got up to a stand without using furniture to assist her. There

she was, standing alone, and she just walked over to the couch....

probably 10 steps. Once she did that, she walked independently, it was

almost like she was afraid to do it alone because she didn't know how

she'd get up from the floor, but once she figured that out, she was a

walker and soon a runner (but that's a whole different issue, LOL.) She

was physically able, but apparently had to get mentally ready to do

it.... I think she was 3 years 2 months when that happened. Most

children with DS walk, run, and participate in many physical activities

with their peers. Unless you have been told there there is a medical

reason she won't be able to walk, I would suspect she's just not quite

ready... what I have learned about children with DS (my own and others)

is that they VERY MUCH do things at their own pace, in their own time,

and often it seems like there is an endless plateau where they are not

making progress in a particular area, and then boom! they make huge

strides in a short period of time... it's almost like they are absorbing

and processing all the information and repetition, and then one day they

just do it. It's actually very cool, once you get past the frustrating

part of a long " stage. "

I have no experience with the screaming, but can only imagine how

difficult this is for your family. Do you think it's a communication

issue? Like many children this age (typical and DS) they get frustrated

with unable to express themselves and get needs/wants met, any some

scream, some have tantrums, etc. Do you work with a speech therapist?

I am wondering if she could improve her communication skills (signing,

picture systems, etc.) if that might decrease the screaming. Or is it

just a behavioral thing where she lets out a scream, then keeps on with

what's she doing, just for fun? Why do you think she is screaming?

Many of us have had the benefit of Early Intervention therapists that

were a resource in the birth-3 age range, and/or people from local DS

support groups. Were you able to connect with anyone in your area?

Like our typical children, our children with DS will develop their

individual strengths as the grow, and it's interesting to see how they

all find their place in the world. When was not walking, her

friend (same age, DS) was walking, running, and swimming! Of course, I

thought " what the heck is wrong with my kid! " The friend's mom felt the

same way.... was putting words together into short sentences

(which I just took for granted, I suppose) and her son was just starting

to say single words. Fast forward a decade later, they are both

included at their neighborhood school, excels more in

academics, where as he plays baritone (quite well) in the school band

and is a good athlete. They both have friends (typical and with

disabilities) and I look at them and see two unique individuals who are

doing what interests them most. wouldn't be caught dead in

the band, she hates loud noises. He probably wouldn't spend many

lunches in the library, reading like she does, he's out clowning around

with his buddies (probably more like the typical 8th grade boys!)

Hopefully you will get more information from others on the list, but

this has been our experience.

, mom to (16), (14 in 5 days, DS) and Sammy (12)

On 1/10/2012 11:26 AM, gratitudehomeschool wrote:

>

> I know a lot of you know much more about DS than we do. Even after 2

> 1/2 years I still feel like I know very little about it.

>

> Thus, certain parts of DS that are difficult for me I am not knowing

> if it is just part of DS that I need to accept as long-term; or, if it

> is a part of stages that DS children go through that will pass.

>

> Our dd will turn 3 next month.

>

> She is still eating baby food and yogurt. At what age did your child

> with DS start eating table foods? Do they all learn to eat? Are any of

> them limited to baby food and yogurt life-long?

>

> At what age did your DS child start to walk? She has been close to

> walking for over a year now. She started cruising on furniture at 1

> 1/2. She has taken a total of 3 steps last summer. She walks very well

> with walking toys. I think she will walk, but need some reassurance.

> Do all DS children walk?

>

> Did your child with DS ever scream instead of talking? When did the

> screaming stop? Do any DS children continue screaming into adult hood?

> She said her first sentence at 11 months, her first word at 4 months.

> At 2 1/2 she talks about once every 5 - 10 days. She sill then

> surprise me with a sentence. The rest of the time she screams to get

> what she wants. I literally can not stand it, and it is affecting my

> relationship with her. I have 3 older children whose nerves too are

> rattled by her very loud ear piecing screams. Has anyone else dealt

> with this problem? What did you do? I just need hope that she will

> grow out of it like she grew out of continuous spitting up? Will this

> too pass?

>

> Overall she is a delightful little girl. We have been told many times

> that her DS is mild. I think if I knew that one day she would walk,

> talk at least a little, eat solid food, and stop screaming I would

> feel a lot more peace about our future. I really am not sure that I

> can parent my own child sometimes with DS! Has anyone else ever felt

> this way! I don't care if she can never read or excel in school. I

> just want to know that she can at least do basic life functions

> someday: Eat, Talk, Walk, and be socially able to be in a room without

> screaming.

>

> Please don't rip me apart on this post. It will only make it harder.

>

>

[Guest guest]

Wow! Let me start by saying to please breathe. Here's my perspective based on my

son's development and friends with kids who also have DS. My opionion only.

Each of our kids grows and develops at their own pace. walked with a

finger touching something for about a year before he took off. He was about 2

1/2. Food was a big issue for us. Not because he had sensory or chewing problems

but because it was a control item. Meaning he could control me into giving him

my undivided attention by refusing to eat anything other than baby food. We did

2 rounds of sessions at the Children's Hospital feeding clinic before I finally

just said stop because it was him wanting to control me. When he went to daycare

center when he was 4 he decided not only to eat table food but to no longer wear

pull-ups because the other kids didn't and he wanted to be like everyone else.

would scream when we would go out to the store or to dinner. It again was

a control issue with him not wanting to be where we were and thought he could

get us to leave. I would let him scream and he finally realized it wasn't

working and stopped. Now at almost 14 I have the whinny stage because he's upset

I won't buy him something new every time we go to the store. I have a friend

who's son is the same age and his speech is not as clear as 's so he tends

to scream more or talk louder to get her attention.

Talking: we started speech at 2 years old and used sign first. This gave him an

outlet to let me know what he wanted instead of him being frustrated because I

didn't understand him. We tried PEC but I didn't find that helpful but a friend

of mine does because her son uses an iTouch to communicate. The therapist worked

on sounds and sight words first and as he learned he dropped the sign and talks.

He stopped speech when he was 5 but continues in school with articulation and

building vocabulary.

Again just my opinion and our experience.

Marcia Freeman

From: gratitudehomeschool@...

Date: Tue, 10 Jan 2012 19:26:15 +0000

Subject: Please Give Me Hope!

I know a lot of you know much more about DS than we do. Even after 2 1/2 years I

still feel like I know very little about it.

Thus, certain parts of DS that are difficult for me I am not knowing if it is

just part of DS that I need to accept as long-term; or, if it is a part of

stages that DS children go through that will pass.

Our dd will turn 3 next month.

She is still eating baby food and yogurt. At what age did your child with DS

start eating table foods? Do they all learn to eat? Are any of them limited to

baby food and yogurt life-long?

At what age did your DS child start to walk? She has been close to walking for

over a year now. She started cruising on furniture at 1 1/2. She has taken a

total of 3 steps last summer. She walks very well with walking toys. I think she

will walk, but need some reassurance. Do all DS children walk?

Did your child with DS ever scream instead of talking? When did the screaming

stop? Do any DS children continue screaming into adult hood? She said her first

sentence at 11 months, her first word at 4 months. At 2 1/2 she talks about once

every 5 - 10 days. She sill then surprise me with a sentence. The rest of the

time she screams to get what she wants. I literally can not stand it, and it is

affecting my relationship with her. I have 3 older children whose nerves too are

rattled by her very loud ear piecing screams. Has anyone else dealt with this

problem? What did you do? I just need hope that she will grow out of it like she

grew out of continuous spitting up? Will this too pass?

Overall she is a delightful little girl. We have been told many times that her

DS is mild. I think if I knew that one day she would walk, talk at least a

little, eat solid food, and stop screaming I would feel a lot more peace about

our future. I really am not sure that I can parent my own child sometimes with

DS! Has anyone else ever felt this way! I don't care if she can never read or

excel in school. I just want to know that she can at least do basic life

functions someday: Eat, Talk, Walk, and be socially able to be in a room without

screaming.

Please don't rip me apart on this post. It will only make it harder.

[Guest guest]

First of all, please be assured that no one is going to " rip you apart " on this

list. That is NOT what we are about... we are a support group. We all have

children who develop differently and we all have different family and emotional

make ups. If anyone DOES post negatively on this list or privately from this

list, please let us know immediately!

Secondly, as others have stated all children, even with DS develop at different

rates for different reasons. Are you involved with the early intervention

program? What do the therapists say?

Let me share with you my experience.

Maverick, now 21, we adopted him at birth... he had open heart surgery and had

5% chance of survival. Due to the heart condition he was a bit slow to develop

physically.. but walked by 3. Speech is not real clear but he gets his needs

known. We did sign language from birth.. he now uses little sign. Feeding..

he had tactile issues and only age applesauce and drank goats milk with instant

breakfast in it for at least the first 3 years.. the graduated to toast and then

added other foods, pizza being and remaining to be his favorite. No screaming.

Early intervention from birth on.

Logan, now 9, we adopted him at age 6, no speech and only scooted on his butt.

Now runs and talks. Eats all foods but can't tolerate cows milk and has reflux

due to medical issues. Lots of screaming still due to behaviors of neglect in

first 6 years. Also, had sporadic early intervention.

So, you see there can be a wide range of development even in one family.

I would ask the OT for a feeding evaluation, if you have not done one already.

I would also ask your case worker for a sensory integration evaluation and

perhaps check into neurofeed back.

And I would ask for respite and hab services to help support your family and

give you all a needed break.

Please feel free to ask questions of the group or email me off list if you wold

like to.

Praying for you and your family.

[Guest guest]

Hi,

 

I think we all feel as if there are parts of Ds that we don't know about, or are

not experts in because we might have never had to experience it.  I know that

no one would ever attack you or rip you apart for asking questions...this is a

wonderful group and I've always been able to ask questions without being judged.

 

My daughter, is 10.  She walked at 2 1/2.  She used signs until she was

about 18 months and then she dropped them and started to use words.  For a few

years, she would say a word, but not the last consonant of the word, and she

would say as few words as possible to get her point across, instead of using

sentences.  I started to make her say the entire word and then ask in a full

sentence for what she wanted, and that worked well for her.  is BIG on

praise...if you tell her you are proud of her, she will work harder.  She has

her lazy times, too.  She is usually tired and when that happens, I back off. 

I've never had a screaming issue with .  My second son, , had the

most awful scream when he was a baby...the pitch of his scream made me want to

rip my hair out...and as he got older, that tone/pitch remained and he would

scream bloody murder when his older brother did anything to him...I did just

about anything I could to

make him not scream, because it drove me nuts.  He is a typical kid, but I do

understand being overwhelmed with a screamer...I wonder how we made it sometimes

:0)

 

had early intervention services from 6 weeks old.  She had physical,

occupational, speech and developmental therapies.  She did not have any feeding

issues, however, my youngest daughter Riley did.  She is now 17 months old and

is past the issues, but I took her to be evaluated by a speech therapist and we

did not have a good experience.  Riley had severe stranger anxiety and she

would not cooperate in therapy, so the speech therapist did not recommend

therapy for her due to her " behavior " ...she was 9 months old at the time.  So,

I reached out to my Ds family and got some wonderful advice on different things

to try with her, and now she eats like a champ.  I also referred back to the

books I had bought when was little...I like the Woodbine series.

 

I remember thinking to myself, I want to be able to speak and be

understood.  I knew she would eventually walk, jump, run etc., but I worked

really hard on her speech and articulation and she speaks pretty clearly.  And

I was right, she can run, jump and all that stuff.  She is not atheletic by any

means, but she does okay.

 

I think you are at that age where it seems like your daughter should be doing

more, but you aren't sure because who do you compare her to?  The best advice I

can give you is to just remember that all kids develop differently.  If she

isn't in therapy, then I would recommend you see what types of programs are

available in your area.  had therapy at no cost to us from 6 weeks old

until now.  Riley, however, I have to pay for her therapy.  She is 17 months

old and not walking, she has low muscle tone and she is currently in physical

therapy.  I do OT and speech with her myself since she still has some stranger

anxiety.  When she did go to OT, she would scream the entire time...and there

was a time when she would scream in restaurants and other places.  Now, Riley

does not have Ds, just some low tone.  Like I said, she had MAJOR stranger

anxiety...she would cry if anyone looked at her.  It's better now, but for a

few months there I didn't

know what to do!

 

I often catch myself wondering if what does is because she had Ds or if it

is just the way she is.  I decided a long time ago to stop worrying about if it

was Ds related and to just do the best I could, with support from people like

the ones here in this group.  There are times I feel overwhelmed and all

alone...but then I reach out and realize I am not alone!

 

Good luck!

Graham

Kay Independent Sr. Beauty Consultant

832-816-7992

www.marykay.com/jendmoyers

________________________________

From: gratitudehomeschool <gratitudehomeschool@...>

Sent: Tuesday, January 10, 2012 1:26 PM

Subject: Please Give Me Hope!

 

I know a lot of you know much more about DS than we do. Even after 2 1/2 years

I still feel like I know very little about it.

Thus, certain parts of DS that are difficult for me I am not knowing if it is

just part of DS that I need to accept as long-term; or, if it is a part of

stages that DS children go through that will pass.

Our dd will turn 3 next month.

She is still eating baby food and yogurt. At what age did your child with DS

start eating table foods? Do they all learn to eat? Are any of them limited to

baby food and yogurt life-long?

At what age did your DS child start to walk? She has been close to walking for

over a year now. She started cruising on furniture at 1 1/2. She has taken a

total of 3 steps last summer. She walks very well with walking toys. I think

she will walk, but need some reassurance. Do all DS children walk?

Did your child with DS ever scream instead of talking? When did the screaming

stop? Do any DS children continue screaming into adult hood? She said her

first sentence at 11 months, her first word at 4 months. At 2 1/2 she talks

about once every 5 - 10 days. She sill then surprise me with a sentence. The

rest of the time she screams to get what she wants. I literally can not stand

it, and it is affecting my relationship with her. I have 3 older children whose

nerves too are rattled by her very loud ear piecing screams. Has anyone else

dealt with this problem? What did you do? I just need hope that she will grow

out of it like she grew out of continuous spitting up? Will this too pass?

Overall she is a delightful little girl. We have been told many times that her

DS is mild. I think if I knew that one day she would walk, talk at least a

little, eat solid food, and stop screaming I would feel a lot more peace about

our future. I really am not sure that I can parent my own child sometimes with

DS! Has anyone else ever felt this way! I don't care if she can never read or

excel in school. I just want to know that she can at least do basic life

functions someday: Eat, Talk, Walk, and be socially able to be in a room

without screaming.

Please don't rip me apart on this post. It will only make it harder.

[Guest guest]

WOW! My email box is full of wonderful and meaningful posts. I am going to

read every single one of them and go over every suggestion with my DH. The

support on this board is incredible. I had no idea, and I am grateful.

Blessings,

Carin

>

> Hi,

>  

> I think we all feel as if there are parts of Ds that we don't know about, or

are not experts in because we might have never had to experience it.  I know

that no one would ever attack you or rip you apart for asking questions...this

is a wonderful group and I've always been able to ask questions without being

judged.

>  

> My daughter, is 10.  She walked at 2 1/2.  She used signs until she

was about 18 months and then she dropped them and started to use words.  For a

few years, she would say a word, but not the last consonant of the word, and

she would say as few words as possible to get her point across, instead of using

sentences.  I started to make her say the entire word and then ask in a full

sentence for what she wanted, and that worked well for her.  is BIG on

praise...if you tell her you are proud of her, she will work harder.  She has

her lazy times, too.  She is usually tired and when that happens, I back off. 

I've never had a screaming issue with .  My second son, , had the

most awful scream when he was a baby...the pitch of his scream made me want to

rip my hair out...and as he got older, that tone/pitch remained and he would

scream bloody murder when his older brother did anything to him...I did just

about anything I could to

> make him not scream, because it drove me nuts.  He is a typical kid, but I

do understand being overwhelmed with a screamer...I wonder how we made it

sometimes :0)

>  

> had early intervention services from 6 weeks old.  She had physical,

occupational, speech and developmental therapies.  She did not have any feeding

issues, however, my youngest daughter Riley did.  She is now 17 months old and

is past the issues, but I took her to be evaluated by a speech therapist and we

did not have a good experience.  Riley had severe stranger anxiety and she

would not cooperate in therapy, so the speech therapist did not recommend

therapy for her due to her " behavior " ...she was 9 months old at the time.  So,

I reached out to my Ds family and got some wonderful advice on different things

to try with her, and now she eats like a champ.  I also referred back to the

books I had bought when was little...I like the Woodbine series.

>  

> I remember thinking to myself, I want to be able to speak and be

understood.  I knew she would eventually walk, jump, run etc., but I worked

really hard on her speech and articulation and she speaks pretty clearly.  And

I was right, she can run, jump and all that stuff.  She is not atheletic by any

means, but she does okay.

>  

> I think you are at that age where it seems like your daughter should be doing

more, but you aren't sure because who do you compare her to?  The best advice I

can give you is to just remember that all kids develop differently.  If she

isn't in therapy, then I would recommend you see what types of programs are

available in your area.  had therapy at no cost to us from 6 weeks old

until now.  Riley, however, I have to pay for her therapy.  She is 17 months

old and not walking, she has low muscle tone and she is currently in physical

therapy.  I do OT and speech with her myself since she still has some stranger

anxiety.  When she did go to OT, she would scream the entire time...and there

was a time when she would scream in restaurants and other places.  Now, Riley

does not have Ds, just some low tone.  Like I said, she had MAJOR stranger

anxiety...she would cry if anyone looked at her.  It's better now, but for a

few months there I didn't

> know what to do!

>  

> I often catch myself wondering if what does is because she had Ds or if

it is just the way she is.  I decided a long time ago to stop worrying about if

it was Ds related and to just do the best I could, with support from people like

the ones here in this group.  There are times I feel overwhelmed and all

alone...but then I reach out and realize I am not alone!

>  

> Good luck!

>

> Graham

> Kay Independent Sr. Beauty Consultant

> 832-816-7992

> www.marykay.com/jendmoyers

>

>

> ________________________________

> From: gratitudehomeschool <gratitudehomeschool@...>

>

> Sent: Tuesday, January 10, 2012 1:26 PM

> Subject: Please Give Me Hope!

>

>

>

>  

>

> I know a lot of you know much more about DS than we do. Even after 2 1/2

years I still feel like I know very little about it.

>

> Thus, certain parts of DS that are difficult for me I am not knowing if it is

just part of DS that I need to accept as long-term; or, if it is a part of

stages that DS children go through that will pass.

>

> Our dd will turn 3 next month.

>

> She is still eating baby food and yogurt. At what age did your child with DS

start eating table foods? Do they all learn to eat? Are any of them limited to

baby food and yogurt life-long?

>

> At what age did your DS child start to walk? She has been close to walking

for over a year now. She started cruising on furniture at 1 1/2. She has taken

a total of 3 steps last summer. She walks very well with walking toys. I think

she will walk, but need some reassurance. Do all DS children walk?

>

> Did your child with DS ever scream instead of talking? When did the screaming

stop? Do any DS children continue screaming into adult hood? She said her

first sentence at 11 months, her first word at 4 months. At 2 1/2 she talks

about once every 5 - 10 days. She sill then surprise me with a sentence. The

rest of the time she screams to get what she wants. I literally can not stand

it, and it is affecting my relationship with her. I have 3 older children whose

nerves too are rattled by her very loud ear piecing screams. Has anyone else

dealt with this problem? What did you do? I just need hope that she will grow

out of it like she grew out of continuous spitting up? Will this too pass?

>

> Overall she is a delightful little girl. We have been told many times that

her DS is mild. I think if I knew that one day she would walk, talk at least a

little, eat solid food, and stop screaming I would feel a lot more peace about

our future. I really am not sure that I can parent my own child sometimes with

DS! Has anyone else ever felt this way! I don't care if she can never read or

excel in school. I just want to know that she can at least do basic life

functions someday: Eat, Talk, Walk, and be socially able to be in a room

without screaming.

>

> Please don't rip me apart on this post. It will only make it harder.

>

>

>

>

>

[Guest guest]

Breezy had issues with texture of foods. Altho I gave her soft things and

items she enjoyed at regular meals I began to leave little snack trays with

small amounts of different foods with different textures in obvious spots

for her to try at her pace, we had centers set up in her room so there

would be something in her play kitchen, beside her bean bag chair where she

looked at books, at the place she sat to watch videos. I did not introduce

them, she was able to take for herself and judge for herself. To this day

she will not ask for nor does she seek candy, says no thank you to the nurse

who offers a sucker or takes it and says for her sister. She will tho ask

for and enjoy shrimp, broccoli, picante sauce on everything it should go on

and a few it should not. The only thing we have trouble with is the food

has to be cut small, she has a few teeth out and her throat is so small for

swallowing. So it takes a while to eat. She really enjoys it tho. At

nineteen she prefers Chinese Food to pizza and loves a bowl of chicken soup for

breakfast before school. Oh well, to each her own. The main thing is she

is happy and healthy and eats well. Time is a wonderful thing with our

kids, their time and God's time.

Be Blessed,

Gwen

Mom to Breezy

[Guest guest]

Hannah wanted to eat from the time she was very small so I am not much use

there, but even at 12 she has a difficult time getting her words to express

her wants and needs and sometimes has temper tantrums that make things

interesting indeed.

I wish that I had some magic words of encouragement for you, but I can only

say that together, with love and patience, you will both figure out this

dance and it will get better. The " 2s " are a hard age for any child. Keep

reminding her to use her words and eventually she will. Hannah, God bless

her soul, sometimes has to tell me things 8 times before I actually get

what she's telling me... the patience is all on her end now!

Hang in there, Mom!!

Connie

Mom to 6 kids including Hannah (12 DS)

In a message dated 1/10/2012 2:26:19 P.M. Eastern Standard Time,

gratitudehomeschool@... writes:

I know a lot of you know much more about DS than we do. Even after 2 1/2

years I still feel like I know very little about it.

Thus, certain parts of DS that are difficult for me I am not knowing if it

is just part of DS that I need to accept as long-term; or, if it is a part

of stages that DS children go through that will pass.

Our dd will turn 3 next month.

She is still eating baby food and yogurt. At what age did your child with

DS start eating table foods? Do they all learn to eat? Are any of them

limited to baby food and yogurt life-long?

At what age did your DS child start to walk? She has been close to

walking for over a year now. She started cruising on furniture at 1 1/2. She

has taken a total of 3 steps last summer. She walks very well with walking

toys. I think she will walk, but need some reassurance. Do all DS

children walk?

Did your child with DS ever scream instead of talking? When did the

screaming stop? Do any DS children continue screaming into adult hood? She

said her first sentence at 11 months, her first word at 4 months. At 2 1/2

she talks about once every 5 - 10 days. She sill then surprise me with a

sentence. The rest of the time she screams to get what she wants. I

literally can not stand it, and it is affecting my relationship with her. I

have 3

older children whose nerves too are rattled by her very loud ear piecing

screams. Has anyone else dealt with this problem? What did you do? I just

need hope that she will grow out of it like she grew out of continuous

spitting up? Will this too pass?

Overall she is a delightful little girl. We have been told many times

that her DS is mild. I think if I knew that one day she would walk, talk at

least a little, eat solid food, and stop screaming I would feel a lot more

peace about our future. I really am not sure that I can parent my own child

sometimes with DS! Has anyone else ever felt this way! I don't care if

she can never read or excel in school. I just want to know that she can at

least do basic life functions someday: Eat, Talk, Walk, and be socially

able to be in a room without screaming.

Please don't rip me apart on this post. It will only make it harder.

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

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[Guest guest]

My advice is understand that you will freak on occasion and that your child will

develop.  Just at a different pace.  And reaching out to other parents of kids

with DS can be the best thing you can do for you and your child.  Sometimes

(especially when she was younger) I do get discouraged by the fact that Amelia

(11 years old with DS) is not where I think (or some well meaning friend or

family member) she " should " be. But it passes.  Because aside from all that

isn't going the way I want it to go is a kid who is beyond adorable and hard

working and super cute and inspiring in her own willingness to keep on trying. 

I am happy with who and what she is. 

[Guest guest]

> I know a lot of you know much more about DS than we do. Even after 2 1/2

> years I still feel like I know very little about it.

>

*Mine is 11 years and I am STILL reading! Always new things to learn.

Woodbine has TONS of great books about DS.*

>

> Thus, certain parts of DS that are difficult for me I am not knowing if it

> is just part of DS that I need to accept as long-term; or, if it is a part

> of stages that DS children go through that will pass.

>

> Our dd will turn 3 next month.

>

> She is still eating baby food and yogurt. At what age did your child with

> DS start eating table foods? Do they all learn to eat? Are any of them

> limited to baby food and yogurt life-long?

>

*We had to take to feeding therapy for a summer to get her to eat

solid food when she around 4. She was still NURSING at THREE!! LOL She is

still not a big foodie but I am OK with that since obesity is such a

problem. She is also on a diet that only allows fruits, veggies, meat and

some dairy. So she eats VERY healthy stuff all the time .*

>

> At what age did your DS child start to walk? She has been close to walking

> for over a year now. She started cruising on furniture at 1 1/2. She has

> taken a total of 3 steps last summer. She walks very well with walking

> toys. I think she will walk, but need some reassurance. Do all DS children

> walk?

>

*She started to walk around 2 after 'almost' walking for about a year. We

got her ankle braces through an orthopedic and put her around kids her

size/age that were walking and she took off!!*

>

> Did your child with DS ever scream instead of talking? When did the

> screaming stop? Do any DS children continue screaming into adult hood? She

> said her first sentence at 11 months, her first word at 4 months. At 2 1/2

> she talks about once every 5 - 10 days. She sill then surprise me with a

> sentence. The rest of the time she screams to get what she wants. I

> literally can not stand it, and it is affecting my relationship with her. I

> have 3 older children whose nerves too are rattled by her very loud ear

> piecing screams. Has anyone else dealt with this problem? What did you do?

> I just need hope that she will grow out of it like she grew out of

> continuous spitting up? Will this too pass?

>

>

*Have you tried simply not giving her what she wants when she screams? Or

putting her in a time out? If she CAN ask, then make her do that. She is a

kid first and foremost. Don't let her misbehave because of the DS.

Screaming is not a ds thing. If you feel she can NOT speak, teach her sign

and then don't reward the screaming . Tell her no.. what do you do with

your other kids when their behavior is not appropriate? Treat her the same.*

> Overall she is a delightful little girl. We have been told many times that

> her DS is mild. I think if I knew that one day she would walk, talk at

> least a little, eat solid food, and stop screaming I would feel a lot more

> peace about our future. I really am not sure that I can parent my own child

> sometimes with DS! Has anyone else ever felt this way! I don't care if she

> can never read or excel in school. I just want to know that she can at

> least do basic life functions someday: Eat, Talk, Walk, and be socially

> able to be in a room without screaming.

>

*You can begin teaching her to read NOW. Kids with DS learn to read pretty

easily and it can really help with communication down the road. Sight

reading seems to be the easiest way to start with them. again, Woodbine has

a great book on how.

She WILL learn to do all those things. Best advice I can give you is to

teach her everything and expect her to behave like any other child with

regards to being polite and manners. The more you expect and work on, the

more she will be able to do. Kids with DS really need to see how things are

done and to be shown. They are great followers! Not such good leaders so

be her leader. Show her, expect her to learn and if she misbehaves, show

her the right way and then hold her to it. :-) My other advice is to have

her spend as much time with typical peers as possible, no self contained

special ed class rooms. And yes, we ALL have and do feel over whelmed at

times but honestly, is THE most fun kid ever!!!! I have so many

stories about her.. I really should blog. Even a trip to the grocery store

is nothing short of magical with that child.

*

>

> Please don't rip me apart on this post. It will only make it harder.

>

>

>

[Guest guest]

Well, my Conner is only 6 so we have many MANY more trials ahead. It can be the

MOST frustrating yet wonderful experience all at the same time, from what I

gather. As I was thinking about this today, what came to my mind was that

having a child with DS can show you how peaceful life can be when you really let

go of your expectations for anybody. It brings it home everyday that what I

want is not necessarily what is going to happen, not just with Conner but with

life in general. Remembering this brings me peace in every part of my

life....I'm not in charge! (even though I really WANT to be!) I try to just

spend some time getting to know who Conner IS, and in trying to learn about him

I think I help HIM learn about himself. He is wild, he is really funny (with an

amazingly grown up sense of humor), he loves animals and nature. He didn't talk

until he was 4 1/2 (now he never stops), he didn't walk until he was over 2 (now

he doesn't stop), he didn't play with toys until much past his siblings (now he

plays with totally age appropriate toys)....it's just that nothing ever happened

when I wanted it to....but it did happen. If there was something that someone

would have told me when he was little it would be: a. Teach him the word NO,

really young. He doesn't get this one because I think we thought he was so

cute. Well, he's still cute but sometimes you want him to STOP.b. I would have

worried more about his communication than his physical/other developmental

stuff. This is the most frustrating for he and the rest of the family...not

understanding. School/friends/speech therapy has helped this but I wonder if we

would be less frustrated if we had better skills (sign language?) Good luck and

enjoy! And I hope you also know that I'm right there with you, too, in some

hopeless days...this too shall pass. >

> From: anndmasch@...

> Date: Wed, 11 Jan 2012 19:26:10 -0800

> Subject: Re: Please Give Me Hope!

>

> My advice is understand that you will freak on occasion and that your child

will develop. Just at a different pace. And reaching out to other parents of

kids with DS can be the best thing you can do for you and your child. Sometimes

(especially when she was younger) I do get discouraged by the fact that Amelia

(11 years old with DS) is not where I think (or some well meaning friend or

family member) she " should " be. But it passes. Because aside from all that

isn't going the way I want it to go is a kid who is beyond adorable and hard

working and super cute and inspiring in her own willingness to keep on trying.

I am happy with who and what she is.

>

>

>

[Guest guest]

Hi,

Just like Marcia said, all our kids develop at different stages. My now

21 year old daughter began to walk just past 2 years old and to talk at 2

1/2. Does your daughter get any early intervention services? Or speech or

physical therapy? They could really help her in her development.

You should also look into getting some respite help- someone who can stay

with her for a few hours so you can get a break. Just some suggestions

that might help.

As far as hope is concerned.... my daughter graduated high school, went to

a 2 year college program, is in the choir at our church, is in a job

training program and has issues with her boyfriend just like any other young

adult.

So yes, it will hopefully get better. Try to get some services to help

you out.

In a message dated 1/10/2012 3:16:36 P.M. Eastern Standard Time,

mloomas@... writes:

Wow! Let me start by saying to please breathe. Here's my perspective based

on my son's development and friends with kids who also have DS. My

opionion only.

Each of our kids grows and develops at their own pace. walked with

a finger touching something for about a year before he took off. He was

about 2 1/2. Food was a big issue for us. Not because he had sensory or

chewing problems but because it was a control item. Meaning he could control me

into giving him my undivided attention by refusing to eat anything other

than baby food. We did 2 rounds of sessions at the Children's Hospital feeding

clinic before I finally just said stop because it was him wanting to

control me. When he went to daycare center when he was 4 he decided not only to

eat table food but to no longer wear pull-ups because the other kids didn't

and he wanted to be like everyone else.

would scream when we would go out to the store or to dinner. It

again was a control issue with him not wanting to be where we were and thought

he could get us to leave. I would let him scream and he finally realized

it wasn't working and stopped. Now at almost 14 I have the whinny stage

because he's upset I won't buy him something new every time we go to the store.

I have a friend who's son is the same age and his speech is not as clear

as 's so he tends to scream more or talk louder to get her attention.

Talking: we started speech at 2 years old and used sign first. This gave

him an outlet to let me know what he wanted instead of him being frustrated

because I didn't understand him. We tried PEC but I didn't find that

helpful but a friend of mine does because her son uses an iTouch to

communicate.

The therapist worked on sounds and sight words first and as he learned he

dropped the sign and talks. He stopped speech when he was 5 but continues in

school with articulation and building vocabulary.

Again just my opinion and our experience.

Marcia Freeman

From: gratitudehomeschool@...

Date: Tue, 10 Jan 2012 19:26:15 +0000

Subject: Please Give Me Hope!

I know a lot of you know much more about DS than we do. Even after 2 1/2

years I still feel like I know very little about it.

Thus, certain parts of DS that are difficult for me I am not knowing if it

is just part of DS that I need to accept as long-term; or, if it is a part

of stages that DS children go through that will pass.

Our dd will turn 3 next month.

She is still eating baby food and yogurt. At what age did your child with

DS start eating table foods? Do they all learn to eat? Are any of them

limited to baby food and yogurt life-long?

At what age did your DS child start to walk? She has been close to walking

for over a year now. She started cruising on furniture at 1 1/2. She has

taken a total of 3 steps last summer. She walks very well with walking toys.

I think she will walk, but need some reassurance. Do all DS children walk?

Did your child with DS ever scream instead of talking? When did the

screaming stop? Do any DS children continue screaming into adult hood? She said

her first sentence at 11 months, her first word at 4 months. At 2 1/2 she

talks about once every 5 - 10 days. She sill then surprise me with a

sentence. The rest of the time she screams to get what she wants. I literally

can

not stand it, and it is affecting my relationship with her. I have 3 older

children whose nerves too are rattled by her very loud ear piecing screams.

Has anyone else dealt with this problem? What did you do? I just need hope

that she will grow out of it like she grew out of continuous spitting up?

Will this too pass?

Overall she is a delightful little girl. We have been told many times that

her DS is mild. I think if I knew that one day she would walk, talk at

least a little, eat solid food, and stop screaming I would feel a lot more

peace about our future. I really am not sure that I can parent my own child

sometimes with DS! Has anyone else ever felt this way! I don't care if she

can never read or excel in school. I just want to know that she can at least

do basic life functions someday: Eat, Talk, Walk, and be socially able to

be in a room without screaming.

Please don't rip me apart on this post. It will only make it harder.

[Non-text portions of this message have been removed]

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

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