Speaking to Henry’s SLP today, I learned that he is likely not going to be a verbal communicator. She said he is doing well with signs and picture exchange but isn’t even attempting to imitate sounds. She told me it isn’t impossible that he will talk some time in the future, but not any time soon. I’ve read posts on this forum about the magical age of speech happening around 3 ½ and 4 ½. We’ve reached that age with less than a handful of words. I thought if I was patient the words would come. Being told they probably won’t makes me feel pretty hopeless.

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Racheal
mom to Henry (01/06), Ramona (06/08), and Cora (2/10)

(by Valeri Andersen photograhy, unedited)

Don't underestimate my ability
Don't definate my character
Don't belittle my authority
It's time you recognize my quality

-Peter Tosh, I Am That I Am

Huge hugs. Hearing that had to of been hard. Don't give up hope. You never know, he just may wake one day and have so much to say.

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~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs pull through 12/8/08 )
http://www.caringbridge.org/visit/austinpaquin

I know it sucks...but I've got the opposite problem...everyone giving me false hope which I HATE. I wish someone would just be honest with me and tell me he's not going to talk anytime soon if he ever does...I logically know it, but when a "professional" doesn't acknowledge it and gives the "glass half full" speech, it really depresses me, because I half hope and expect that he will actually do what they say he'll do...only to have him not do it...

So even though it's not the best news...be thankful they have the courtesy to be honest with you.

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Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10)

Well.... I know how you feel....way to much..... I have waited for almost 10 years to hear colin say any two words together and have someone besides me recognize them........ he does have some vocalizations now.... but they all sound the same and all he will only do them if you mke him......and I MEAN MAKE HIM.... like I with hold toy or food or other important thing

but he signs almost 400 signs and many times puts them together for me (school is not as supportive cause they have limited training with this)

and there really is so much more to communication than talking...... I know 90% of the time what COlin wants to say when he is doing something.....cause I can just see it...... I love it when he does sign.....

I still feel bad on a daily basis when I see his sisters (w/ DS) speaking in sentances and that other people not in their family do understand them..... when I see that in 2 1/2 years Devon no says clearer and more words than Colin..... but that smile he gives me....when he tries to sign a "joke" that the boys are telling at school (think translated stupid knock knock jokes) and it just doesn't work but he rolls on the floor with laughter....... I know that he is trying his hardest....... and I AM SO PROUD FOR THAT!!!!!!!!!!!!!!!!

I will not say it will come..... I have been hearing that for almost 8 years.....it still pisses me off...... but I will say what he has will likely improve and you two will get into your own groove and for us most days, minutes, or hours..... this is enough...... (I do love the fact he can write that he loves me!)

Be strong!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS
Devon Richard(4/13/01) DS & Autism
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie


wife to the best & greatest guy Eric




http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

I am not a speech expert, but I think it was out of line for your ST to say that, when in reality, there is no way to know until Henry gets there.

The "average" age is 4, and that is again AVERAGE. Henry might just take a little bit longer.

Our friends (before we even had Nichole) have a daughter with Ds. her speech was, well...lacking in many ways. Just last week we were at the movie theater together, and I talked to her. I was blown away, she is not just talking, but doing great at it! She is 10 years old (maybe 9). Can you imagine if someone would have told our friends that their daughter would never talk based on her speech at 4 years old?

It would be like having a PT say, "your child will never walk" because they are not walking at age 2. Again, the AVERAGE for kids with Ds. When in reality, some don't walk until they are 3, 4, or even older.

Do not loose hope!

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Ellen, honored to be married to Andy since Feb 2003 and mom to Ellie (08/21/05) Nina (05/01/06 CP) and Nichole (10/02/07 DS)
www.elliestumbo.blogspot.com

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
God does not make mistakes

One other thing....... I will tell you with all of mine the verbal and non verbal ones ...... there was a language explosion between the end of EC and the beginning of KGTN ...... all four of mine that I had during those years have a huge language increase (vocal in my talkers,,,,and signing in my non talker)..... a huge growth spurt......and huge just getting older/mature/OMG where did my baby go moment)

All four of mine have done this ....same with the other children I have observed with ds through EC with the kids....... THE CHANGES ARE AMAZING!!!!!!!!!!!!! It is like I get a new kid ...one morning they are there..... you have a little time left.......

Miranda's was there too...... I will try to find a June photo and one from today....... it is like I have a little girl and not a toddler like she was at the end of school last year...... he is taller...more confident....more verbal.....more child not a baby...... and with her seizures and all that I am so amazed!

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Jane
mom to
Colin Miguel (11/19/00) DS
Devon Richard(4/13/01) DS & Autism
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie


wife to the best & greatest guy Eric




http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

I'm sorry you're feeling hopeless. I have those days, too. I wouldn't give up hope yet, though. He's still so young. You never know - and I don't think the SLP knows either. But it is great that Henry can communicate through signs and pictures. Communication is the most important thing - that he wants to tell you things and is able to.

Matthew is a little over 3 with no words and not much babbling either. Just the occasional mamamama or bawbawbawbaw. He has a handful of signs (that aren't even actual signs - no one would understand if I didn't tell them what they meant) that he uses sometimes. I know how you feel, although nobody has told me that Matthew isn't going to be a verbal communicator. I just worry about it since he's not doing much babbling and does not imitate sounds or signs. He just this month started to try to imitate me when I do the Itsy Bitsy Spider motion - after 3 years of doing it with him! I was so excited!

When I read that the average for talking is 4 I feel like we're not going to hit that, but I really wish we could. Even if it is just a word approximation or two, because that would give me a lot of hope for the future. I feel sad that he can't truly tell me what he is thinking/feeling. I can usually get a general idea based on his mannerisms and gestures, but I don't always know exactly what he wants. Now that he started preschool last week, I wonder what his peers and teachers are able to communicate to him. And whether Matthew tries to communicate with them.

I'm so sorry you have to go through that worrying, but I hope in the end it's for nothing and Henry surprises you! I would just keep that communication going with signs and pictures and hope the words are on their way soon!

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Melissa & Jason
Matthew (DS) and Zachary

Stop listening to the SLP!!!!! The average age for expressive language (speech) is between 4-6 years of age!!!! Your child is just 4....he is just starting out. Think of the range of speech for a typical developing child at age 2....you have those who are late talkers with just a few words to no words to those kids who are speaking in paragraphs. I think so many therapist get frustrated and do not know how to work with a child who is "non-verbal" or has limited verbal skills. I don't agree with your speech thearpist and I haven't met her or your child.

Please...please go to http://teachmetotalk.com Listen to the podcasts....start with the very first one and continue. Nate could not parrot any sound or word at age 3!!! We had to teach him how to mimmick....it was a lot of work but he did learn. Not that he is speaking in full paragraphs now at almost 6 but he is talking. He can say a lot and he gets his needs known! He is speaking in sentences and phrases.

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Sherry
Evan 10, Olivia 9, and Nate 6*

Hosted on Fotki

Our son will be 6 in November and I'd say his verbal language burst just happened in the last 6 mo. He had some words before that (and a lot of signs), but as for being chatty on his own? That is still brand new. For us, I noticed great increases that paralleled his younger sibling's speech. There is a two year age difference, I notice you have the same age span in your kids. I'd expect those younger siblings to be more successful at pulling speech out of him than an SLP. Is your SLP from your school district or private? I really think I'd want to consider a swap there. I think there's a fine line between being realistic and not having high enough expectations. Maybe she's right, I don't know your child, but I'd want someone pushing for verbal speech with the thought in that person's head that it might actually be possible.

Abigail just turned 6 yesterday. Her speach is like a 2 year old. She signs some words but not that many. She just started saying more words but they all sound the same. She put 2 words together sometimes. I am hoping she will talk some day that people could understand her. No one ever told me she will not talk. I thoght it myself but I never said it.

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Carol mom to Adam 6/17/96 ,Emily 8/7/98, Abigail (DS)8/16/04

I've been thinking about this all day now. I'm going to take what she says with a grain of salt. She's only seen Henry 5 or 6 times (we just started private speech a couple of months ago). He does imitate sounds at home so maybe he just hasn't warmed up to the verbal level with her. It did take him almost a year to finally utter a single noise at school. He says "no" really well, "dog", several animal sounds, "milk", "more", and an approximation of "I love you". He even says "aargh" for pirates, "Yaaw" for vikings, and "hee haw" for cowboys (thanks to the Backyardagains). My step mother, also an SLP, said that maybe this therapist just really likes PECS, she's comfortable with it and by golly that what Henry's going to learn. If it looks like that's all she has to offer, we'll switch therapists. In her defense, I asked when she thought he'd be talking.
Really I shouldn't be complaining. Henry is very healthy, happy, outgoing, and he does communicate in his own way. I understand what he wants or needs most of the time. I just want to know what he's thinking and how he's feeling.

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Racheal
mom to Henry (01/06), Ramona (06/08), and Cora (2/10)

(by Valeri Andersen photograhy, unedited)

Don't underestimate my ability
Don't definate my character
Don't belittle my authority
It's time you recognize my quality

-Peter Tosh, I Am That I Am

Talitha was seeing a speech therapist and in nearly 8 months she never spoke more than a couple of words to her. At home she never shuts up although there is much that no one can understand.

Her speech really only started to improve over the last 6 months or so.

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

I am so with Ellen and Sherry on this topic!!! That was waayyyyy out of line for you SLP! Glad you have been giving it some thought and decided to allow your little man to blossom in his own time with no preset limitations by your SLP!
You go, Henry!!! You'll shine in your own time! : )

~Lauri

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"not anytime soon" doesn't mean never!!! And you said he has a handful of words?? You mean he can say a handful of words??? If he is saying a handful of words and can do signs and PECS that's pretty darn good! Seriously.....

So, I am no SLP nor do I claim to be one, but I AM a mom of a 100% non-verbal 12 yr old child who can't talk...not "has a handful of words" but chooses not to talk, he can't talk. It's my opinion from reading speech posts and just talking to doctors,teachers, SLP's and our neuro, that a child that can communicate, i.e. signs and PECS, has a MUCH better chance of having SOME words or can "get" the concept of verbal communication and in time, it does come. A child, like my son, that has little to no overall communication, who can't initiate signs, guesture, etc....usually are the ones that can't speak or have the harder time. Again, that's just my opinion....but I know it goes hand and hand.

So, your son may or may not be a good "talker" but I think it's too soon to invest too much into what the SLP said. I have good friends who's boys w/DS didn't talk until they were 6 and 7 yrs old and they talk JUST as good as the ones that talked at 3 or 4.

But I KNOW how it can bum you out....boy do I know. So I can't tell you not to be bummed out. We rely and expect so much in society from verbal words. It's my biggest hangup with Russell, that he doesn't speak a lick.....

So...HUGS....and keep on working with him and expect the SLP works with him! When it's meaningful and he realizes it has a purpose, he will use it.

And Bradybunch girl....I can relate....we had many well-wishes over the years that were SURE Russell would talk one day..."Just wait, he WILL talk".....but thankfully I knew better, as did our Ped Neuro and our Devel Ped.

A.

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Adrienne - mom to: Regan 17, Russell 12 DS, Autism, Visually Impaired, Reece 9.

DSAGSL 2009 Buddy Walk

I agree with those above who said don't listen to that SLP. None of us are God and can predict the future. I was also told Angela would never SURVIVE!!! Umm...HELLO!!!! Then I was told she would never eat orally. Well, we're there! (though we're always at risk of loosing that one.) She would never regain the use of her left side. Yeah...sorry!!!!!!

I hate when people say "never", because "never" is a very long time. I know two adoptive parents who've been told their children would "never" walk, and they are, or are very close now. So who is deciding when "never" is???? Who gives some therapist the right to play God and decide?

So, has your son ever been evaluated by a SLP who is KNOWLEDGEABLE about verbal apraxia?

I know a lot of teens and adults with DS. Some are huge talkers (Angela being one of them. Some are more on the quiet side, and some talk only when it's really important to them. There are a handful who don't talk at all.

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~Leah~

Did you visit my mom's blog today?
http://www.gardenofeagan.blogspot.com

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Noah 23, Tyler 21, Angela 14 (DS)

Matthew is 7 and is just starting single words/approximations. Up until about 6 1/2 (when we went gluten free) he rarely even tried to immitate sounds.

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Heather
Matthew 5-21-03 DS and Ryan 2-14-01

Logan's didn't verbalize "Mom" until he was 4 and only spoke 1 and 2 words at a time when he was 6 and starting his 2nd year of Kindergarten. Now, at 7, he's using 4-5 (and more) word phrases. We can't understand him all the time, but he's definitely communicating and we're thrilled.

I would recommend taking a look at the website of Dr. James MacDonald. It's called "Communicating Partners." For us, Dr. Jim's methods made a lot of sense and have been very helpful. He also has an online discussion group that's very supportive and willing to answer questions.

http://jamesdmacdonald.org

I would recommend ignoring the comments of your SLP. In my personal opinion, it's ridiculous to say "never" in your situation.

Kim

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Wife of Marvin
Mom to Logan (3/6/03, Ds) and Carson (9/6/05)