Friday, March 13, 2009

Communication Question

Is it a given that Dylan will have difficulties with speech?

I just started reading, "Early Communication Skills for Children with Down Syndrome" by Libby Kumin and now I'm feeling a tad...overwhelmed. And discouraged. And I'm only on page 23.

In this book, there is a list of 28 different physical differences that affect speech and language in people with Ds. These differences range from low tone in mouth, tongue, and pharynx muscles (there's that stinkin' low tone stuff again!) to difficulties with coordination, accuracy, and timing of mouth movements.

And those are only the "physical" differences. It then goes into a zillion other reasons why people with Ds have communication problems.

Does this mean that I should expect difficulties? I should assume we will have them? Seems like it to me, which is why I've been feeling some additional stress lately. At the end of the chapter it says, "Although the long list of communication problems that children with Down syndrome might have may seem daunting, much can be done to help overcome or alleviate the problems." Much can be done. Sounds good, semi-hopeful I guess, know...sometimes I already feel like our plate is pretty full with challenges. As it is, I feel terribly guilty when I'm not able to find enough time during the day to work on Dylan's strengthening exercises. I try. But some days it seems like the day gets swallowed up with many feedings, with sitting up after each feeding for 40 minutes as to prevent major spit-up issues, napping, errands etc. And now I must find more time to "involve my child in activities and experiences that will help him overcome difficulties in many areas". Do I already do that? If so, am I doing enough to help him overcome these difficulties? I don't think so. Thus, the stress. And additional guilt.

Oh, I don't know. I've just been feeling pressure lately. Of course it's pressure that I've put upon myself, but it's there nonetheless. Some days I feel as though time that is not spent helping Dylan work on strength and communication is time that is wasted. I know that's not totally true and please believe me when I say that we have our fair share of silly times. Drill Sergeant I am not. It's just that I hate having this guilty, naggy, selfish feeling whenever I put Dylan down in ::gasp:: his bouncy chair. I know that the bouncy chair does not "help" Dylan in any way, shape or form. But every now and then I just need to put the little guy down. I need to put him down without thinking of how this particular placement is going to affect his muscles.

Hm, that got a bit side-tracked now, didn't it?

So, back to my original question. Does everyone with Down syndrome have difficulties with speech and communication? Any thoughts or advice on this?


Kimberly said...

I don't have much advise. But don't put yourself down. There is no possible way to spend all of your time working on Dylan. I know you do as much as you can and he is doing so great. Just do what you can and don't stress too much.

Tricia said...

You already know this, I am sure, but don't beat yourself up over putting D down in the chair. He needs you to do that for a few reasons. So YOU get a break and can recharge, so HE can get a break and recharge, and so he can also learn how to be independent and perhaps entertain himself every now and again. Or...MORE than now and again.

I don't know if EVERY kid with DS has speech delays problems, but Georgia does. We work with her to an extent, but my gut tells me that she will talk when she is good and ready, just as she did with walking. There really IS only so much you can do. I don't think G's speech delays are due to low-tone so much as I think the synapses between her BRAIN and her mouth are not firing in conjunction with one another. She knows what she wants to say. I really think that. We're just working on getting it out.

When we can.

As much as I would like to take some credit for all Georgia is accomplishing in this brief 2 and a little years, she does most of it on her own.

You will surely be able to take D's lead before you know it. He's still so young. Just engage with him like you would any child. Talk, laugh, sing, act silly, read books...I think that's the best way to work on language development.

But like I said, my kid isn't talking. Though she DOES communicate. Do you do any signing?

Tausha said...

Funny but I had this same breakdown the other day and called my Mom. Number one, God would not of sent this child to you if he thought you would not do your best in helping him. She also told me that my child will be who he is going to be and accomplish what he is going to accomplish in his own time. She said no matter how much PT I do with him, he is going to do it when he wants to do it. He may have some of the challenges that books talk about and he might not so don't stress yourself out. My mother said if I don't take time for myself then the baby will thrive and the mother will die and how can I take care of him them. You need to recharge your batteries and let him learn how to entertain himself. Yes we need to do some PT and all the other stuff but do what you can and then let him do his part. He will achieve what he is supposed to achieve in his own due time. Relax and breathe.

Little Miss E said...

We gave you an award!!

Hector and Jennifer Varanini Sanchez said...

I was always told the floor is the best environment for any baby so when in doubt just know that by placing him on the floor, he will be able to explore his environment and if motivated to play with something, he will find a way to get there. This is great therapy and it doesn't take any involvement of the parent. Just an opportunity that we allow the child. Opportunity to move is one of the most important things so again, when you need time to recharge put him on a safe, comfortable floor area with some toys and interesting things to look at and no need to feel anymore guilt :)!!!!
I too worry about communication. I just watched Mr. Blue Sky and the actress in the movie is very high functioning but she definitely has speech challenges, it is difficult to understand her at times. It seems like this is one area that is a real challenge.

Mara said...

dont think about all the waht ifs and take it day by day- sometimes too much info is bad. Worry about it if and when if becomes a problem. And look into signlanguage- I did it with my older daughter and my mom did it with me- it is good on multi levels and will help Dylan communicate if he is delayed. My older child took it for her forign language for high school so it may be good for cassidy too ! And bouncy chairs are not bad they keep the muscles in line wich other things dont always do (says my ot)

heika said...

greetings from germany ! my 12-year-old son lukas has a severe brain damage and needs a lot of therapies . we all try to do our best for our children but we must never ever forget to enjoy our time together ! as long as you keep thinking you are not doing enough for dylan , you can't be a happy mother and i'm sure he would find out - which wouldn't be a positive base to develop from . by the way : i know a lot of ds-persons , children and adults . some of them had a lot of therapies but don't actually talk , others are able to articulate in a very "sophisticated" way . they are all different , but all of them are charming !

Karly said...

I always wonder about this too, Laurie. Our EI is really shitty in this area and kids are not given an actual ST (separate from the general therapist) until they have reached the 2 year old program which includes a school session. It really sucks to hear about people getting ST at 6 months and to wonder if we weren't doing enough. We are able to get private ST now and will be starting in May...but yeah, she is 2 already. I do know that the main thing they look for is cognition in small kids and so I feel we have at least done a good job with sign language. Like Tricia said, it doesn't seem to be a low tone/structural issue with us, as much as her just being ready to talk.

Anyway, {hugs}. I know just how you feel. (We have that book too and I am not really sure we have gotten any great suggestions from it).

The Lehnick Family said...

I also worry about the speech communication with our little you...there isn't ALWAYS enough time in the day to work, work work on it! But know that we are doing all we can right now...and know that Dylan will be able to communicate and you will adapt to any delays there may be...we already all on the bright side, our children are going to be able to communicate with us whether it be speaking, sign language, a very cute smile....they will all get is SO OVERWHELMING when we look at the big picture...I am there with you...but sometimes, you just gotta take it minute by minute!
You are a great mommy! Dylan is very blessed to be with such a great family.

Megan said...

My take:

Don't assume that he'll have a delay with anything, but don't be surprised if he does. Treat him as you treat Cassidy, he'll benefit more from that, imo, than from always having to be "on" or "working".

You can only do so much. You're one mom (one great mom), but you have other responsibilities, too. One of which is making sure you're taking care of yourself.

I can only take Ds books in small doses. I find them to be overwhelming and, a lot of the time, downers (too much focus on the "won't dos). Lord knows if we had someone "testing" us at these intervals and giving us "grades", we'd all be deficient in some area.

Bethany said...

I would say the answer to your question is "yes". Most kids with DS do have speech difficulties. It is par for the course.


This reminds me so much of a time that Payton was about 6 months old and I attended the talk tools session at the national DS convention. I walked out a just cried. I was SO overwhelmed with everything that there was to do, all the options. When was I going to have time to do all these things? I cried on the shoulder of the talk tools lady (no joke...LOL) and the best advice she gave me was ... "Take it one day at a time." Start with one thing and move up the ladder. So I did. My daughter is 3 and only has a couple words, most of which are approximations. And you know what ... IT IS OKAY. As you and Dylan grow, you will realize IT IS OKAY.

Can it be frustrating? Heck yes. The best thing you can do for him is to teach him sign, sign, sign. Look up talk tools if you haven't already ... they have a great program and you can take it one step at a time.

Hugs to you ... we have all been in your shoes. Eventually we have to be at the mercy of Down syndrome, so to speak. I'm not saying we don't try, but we realize that we also have to live our lives and delays are going to be okay.

It is very hard to make someone understand that when they are so new to this journey. It was the same for me, but here I am. We are not super moms and we can only do the best we can for our kids. Try not to get overwhelmed. ;)

Anonymous said...

I thought I might share with you as an "older" mom. My son Elijah is 13. Yes, I believe almost all children with DS have some form of speech difficulties. Crazy as it may seem, they all seem to vary, just like every other kid. My son has great speech (even though his voice is changing!) but has severe fluency issues. (stuttering) All of which he is starting to notice, which makes it harder on him. We began speech work at about two months old and it's the only therapy we continue to do with him. I found Talk Tools later and wished I would have started the program much sooner. I think they really have the right idea. Anyway, I just wanted to let you know that I've had thirteen years to deal with it and I still have those moments of regret and wishing I would have done more. The fact is it will happen. Elijah learned to roll over, sit up, walk, talk, swim underwater,ride a bike, ride a horse,drive a full size go-kart, ice skate, mow the grass and plays baseball. If I had to put him in his bouncy seat sometimes, he survived. I'm sure that if you are worried about it, you are doing more than enough to make sure Dylan is thriving. Expect great things from him, I'm sure you won't be disappointed!

Lisa said...

Laurie, I am right there with you. This is something I have begun to really stress out over as well. And every day I worry that I'm not doing enough to stimulate Finn, to engage him - I feel like my every interaction with him is supposd to be theraputic, and it gets to be so stressful and overwhelming. I'm really concerned about speech too, and in our area, we don't get separate ST until 18 months. On the other hand, there is this little voice in my head that keeps telling me, "No matter how much or how little therapy he has, he'll do things in his own time."

Sigh. I totally understand what you're feeling.

Anne and Whitney: Up, Down and All Around said...

First of all - "ditto" to what all of the other moms said in their comments about what a great job you are doing with Cassidy and Dylan!!! I have the same feelings as you - am I doing enough, am I paying enough attention to Anne and also trying to do Whitney's exercises + tummy time + 30 minutes sitting upright after a feeding + nap time + errands + laundry, housework, bills, insurance, grocery shopping, etc... it is overwhelming, to say the least. I swear, I feel like you post exactly what I am thinking - I started reading the same Down Syndrome communication book about a month ago - but was also trying to finish GIFTS at the same time, so obviously I read Gifts first - it was much more positive and upbeat!!! I am going to read the communication book to see if I can get some useful information out of it - but I am going to try to ignore the "downer" feeling or tone I am getting so far (and I am only about 1/3 finished with the book). I have a feeling there will be other books/doctors/advice/etc... like this and the best we can do is to take in as much info. as possible but remain positive/hopeful/expecting the best for the sake of our kids and ourselves :) Hope you guys have a fun weekend!!!

Amy and Aaron said...

The only thing I know is that nothing is a "given," and that these kiddos are full of surprises!

Thanks for sharing your thoughts and feelings so candidly. It is really reassuring to me that you feel the same way I do about so many things . . . and worry about the same things. Thanks for sharing.

Cathy said...

I have no advice...sorry. I have the same book sitting on my bookshelf along with one on fine motor and another on gross motor skills in kids with Ds. I went a little crazy buying books when Lily was first born. Haven't done anything with them. You're way ahead of me!!!

Jocelyn said...

I'm glad I checked this tonight...I had a little breakdown earlier today and told my husband I hate that I feel bad for taking Myles on a walk, unless it is doubled with his naptime, because I know lying in the car seat is not doing anything for his motor skills. One part of me tells the other that this is a crazy way of thinking, but I can't shut the crazy off. You're not alone!

I worry about Myles' verbal speech skills as well. I really want him to speak with clarity so that people will want to engage in conversation with him, don't we all want that? We just had an evaluation today with the Talk Tools program and learned some little things to do to help with his oral motor strength and feeding skills (he's not so good in this area). We don't receive speech therapy in our area for awhile, so we decided to go private just to get some ideas on what to do now. Maybe your OT could look into something for you?

I started reading that same book as well and got to about page 3. Ugh. Maybe someday I'll wipe the dust off it again.

Rachel Smith said...

I know what you mean about getting that huge overwhelming feeling after reading the books written by professionals. But good for you! We can't bury our head in the sand and hope that our children won't encounter any struggles or challenges. So despite the fear that can enters our minds when we read that we really need to become aware of the challenges that our children may face. Education is power and I really think that feeling of inadequacy sucks but it helps us to grow and be better.
I agree with Tricia that he needs bouncy chair time for you and for him to relax. I love the bouncy!! When he grows out of it I have no idea what I am going to do! He can't be doing therapy all day everyday non-stop...check out the movie Down syndrome: the first 18 months. It gives a great perspective on having balance in your life and realizing that normal life is therapy for Dylan. You are a great mom...hang in there and keep reading.

Angela said...

We don't get ST until 18 months here.

I put Benjamin in the exersaucer, the johnny jump-up, in his playpen with toys, and on the floor all the time. I agree with another commenter that being on the floor does a LOT for his physical development. Just letting him explore is wonderful for him.

Benjamin is almost 11 months old. I have barely even tried sign language so far. I just feel defeated before I have even started. We do "more" a lot but am kind of at a loss as to when to work in the other ones. Who has time?


We'll get it one day, girl. Just take it one day at a time.

Loren Stow said...

Wow! What a response to your post! I can tell that this hit with many (as it did with me)!
Just this morning I was telling my husband that I don't know if I'm doing enough for Malakai...
It seems to be something that all mothers feel - so I think the advice here has been good.
Take it one day at at time. Do your best. It will be ok - it really will be.

Mindy said...

Does my son have a delay in speech and communication? No. At 27 months, he has more words than I can count and will speak in 2 word sentences. Does he have a problem with correct enunciation? Sometimes. It depends on the word, but it's getting better over time.

So is it a given that Dylan will have speech delays? No. I think it's better to know that it's a real possibility so you are prepared to deal with it, but it is in no way a definite.

There's only so much you can do with Dylan. You are his mom, not his therapist. When I made that realization myself, my stress levels went way down, and I enjoyed the mommy part much more.

Eva said...

YOU = Love your son.

That's all there is to be said. You love your son, you will do the best for your son to your own ability. Don't compare yourself to some other person! Your son is so lucky to have you for his mom! Don't let your guilt beat you up. I know I have spent a lot of time there, but what I love to be the best is my son's mom and that's what he loves the best about me.

We know our kids. Don't doubt yourself EVER. You are Dylan's mom and he loves you and will never ever look back on his mom with anything other than true love and appreciation.

We love, we are moms and dads of such gifted loving angel children.
- Eva