More about speech

Mylie’s Mom asked these questions in the comments, and I thought they deserved a whole post of their own. She writes:

Niksmom said, “Help your child find a way of communicating that is effective and let them develop from there.” Do you all have ideas for doing this? What methods have you found to be helpful? At what age did you child seem to grasp the potential of signing in communicating – when did they really start to take interest in learning new ones in order to be able to communicate their wants?

I sometimes feel like the poster girl for enthusiastic advocacy, because we’ve tried so many things with Avery. Very early on, we did massage therapy and we saw an alternative therapist (a healer with a specialty in helping people understand and receive the messages from their body) and I was very seriously considering supplements. We did horn therapy, too, a program using different types of instruments that make sounds, and we did sign language (which I had done with Carter, too, so that was more of a familiar part of my parenting experience). We took pictures of things around the house and made story boards for Avery to look at and point to. I read to him, too, a lot. We did Love and Learning, listening to the tapes at bedtime. Avery had music lessons (piano) and then he had playgroups and interactions with his brothers and too, parents of friends and family.

Crazy, much?

All I can say in my defense is that I felt a little bit like we’d gotten a late start with things, that I’d spent too much time in my grief and not enough time really seeing Avery, and that as soon as the clouds of sadness lifted, I found myself hopelessly in love with this little guy, whom I would do anything (and everything) for.

I still feel the love, which has only continued to grow and grow. But the rest of it, the feeling that we needed to do everything and try everything, has settled down a lot. Why? The answer is Avery. As he’s grown, and become able to show me what he needs, what he likes, what he’s interested in, I’ve relaxed into my role as his mom. I consider myself a facilitator–he shows me what he needs, and I try to find ways to help him achieve it.

Which is a long way of saying: we still do signing (our whole family loves Signing Time). He loves Sesame Street (me too, Hi Emily Perl Kingsley!). We do very typical preschool type things, Montessori style hands-on learning, because he responds to that very well. We’re doing a more formal approach to reading, I’m using sight words as well as phonics (almost everything in our house has a sticky with its name spelled out on it).

We read a lot, we do art. Avery still enjoys piano but currently he’s more in love with his guitar, and very recently, he’s begun to swing it up on his shoulder and pluck it like a violin. So maybe that’s next for us.

Molly, our fantastic speech therapist, explained it to me best–it’s a whole language approach. Total immersion in communication, in all forms. It’s been wonderful, and I can’t stress this enough–so much fun. That’s been key for us–learning happens when it feels safe, and supported, and fun!

I’d love to know what things you all have tried…for Mylie’s Mom, and for myself. What’s the best speech therapy experience you’ve had? What’s the worst? What works, and what doesn’t?

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22 thoughts on “More about speech

  1. Yes, Laura, after. I blogged about it tonight. Thanks for the link, I’ll follow it. (Thanks for the one you sent me too, Jennifer! I think I’d seen it before, but hadn’t put it in my reader.)

  2. KYouell, I think you are asking about people having more children AFTER a child with Downs, not the other way around right?
    I have read several blogs that are families with children younger than their DS child. Check out this one if you’d like: http://www.mdbeau.blogspot.com
    The other ones I’ve seen I must have come across through comments and such and don’t have them bookmarked. But they are out there. 🙂 You’re not alone!

  3. KYouell- there are lots of mirrors out there that are not real glass- they are not as clear in reflection but clear enough to be useful. Now that my daughter is 9 we don’t have a floor one but she we have one for the bathroom sink,behind the faucet. It was a baby mirror for changing table only about 10 x 12 but she loves to talk and have fantasy play at toothbrushing time still. The floor one we had was a long mirror built into a homemade stand lengthwise,very sturdy,at a tilt so that she could see herself totally.
    As for the only child thing- I am one of the older mothers, 42 at her birth and one of any chid is just enough for me thank you kindly! My friend/neighbor with a daughter with DS has an older brother!

  4. I also appreciate the mirror link. I’ve been trying to come up with a way to have a mirror in our playroom that wouldn’t get broken and that seems like it will work.

    I notice that many people are commenting that older siblings are a great help. Am I the only one who kept having kids? Meaning, is my son the only big brother out there? I feel like the odd one out even here sometimes. Our local parents group has a monthly play group and I’ve had mom’s with their nurslings quietly lean over and ask me if it was hard to decide to have more kids. Just makes me wonder if our family is a rarity.

  5. Oh yes, the mirror! I need to get one. Thanks for the link to Therapro. Bridget seems to be doing really fantastic! That was fun to read about all she can communicate to you all. 🙂
    Like you, Lisa, I have older children who were very good “talkers” at very young ages. (For example, our son, now 4, had 50 understandable words by 12 months!) Maybe that is why this is so glaring to me. That’s a big difference from one child to the next.
    BUT different is OK!!

    Mylie is JUST starting to let us know what she wants – in her own way – pointing, urging us with her voice, etc… It is exciting because I know SHE is realizing that she can communicate to us about things. Her jabbering has increased a lot in the last week or so and she has begun making different sounds than her usual. All good signs of new things to come! She also seems to go in spurts so I am looking forward to a new group of signs or sounds here soon. 🙂 We’ll see…

    Oh, and I love the Heinz ketchup comment! 🙂

  6. Oh,me again! Lisa’s comment made me remember that we were given a mirror that sat on the floor at a tilt so that, a young child could see themselves in it sitting down. My daughter LOVED it and spent lots of time expressing herself into it. It was lent to us by our friends/neighbors/EI intro folks who’s daughter with DS had also loved it. I believe kids with DS are sooo visual and that is one of the keys to the gate of language for them. What a great post, a great feeling from you all…

  7. Bridget is two and a half. She has 10-15 distinguishable words and lots (50-60) of signs. She has somehow figured out how to communicate most of her needs and wants with the words “mom”, “da” (daddy), “dis” (this), “dat” (that), “dere” (there), “ouch”, “yep”, “no”, “do”, “hup” (cup), and “hug” (hungry)…in combination with a handful of signs. For example, she says, “Dere” (points to the basement), signs “play” and says, “DO!” She means, ” I want to play in the basement”. She says “hup!”, points to the juice on the counter and says, “DO!” She wants her cup of juice. To, “Would you like to take a nap?” she always responds, “NO!” (self explanatory). She sees me leave, points to the door and says, “Mom. Dere. Do!” She means, “My mom left out that door and I want her. I do!” Pretty clear, no?

    According to her EI team, Bridget’s “total communication” is outstanding. We think so, too. We have four older children who talked volumes more by her age, but honestly, her words, signs, facial expressions and gestures make it easy to understand what she wants/likes/needs etc. I guess she is an unlikely communicator :).

    She has always been VERY vocal, just not super verbal. She’s always made lots of sounds, loves to pretend to talk on the phone and carries on in-depth “conversations”…but most people can’t understand most of what she “says”. We’ve looked up signs for all of the important things in Bridget’s life and learned them/taught them to her. She picks up signs quickly, and sometimes I think we should have pushed this more. In the end, I know we have focused on the signs that have real meaning to her…and have created a type of functional communication within our family. We’ll see how she progresses and add signs or further speech therapy as it becomes clear from which she will benefit most. (We talk to her all the time, read to her, sing to/with her…and involve her in ALL family activities…so she is constantly exposed to communication of all types.)

    We are also working on spoken words. Bridget LOVES seeing herself in mirrors, and I have found it helpful to stand behind her and “mouth” words to show her how to move her mouth to produce sounds. She loves to imitate and responds to: “Watch my mouth (while pointing to mouth). Say TEETH. Say BUBBLE….” I found an inexpensive/unbreakable therapy mirror at Therapro: (http://www.theraproducts.com/index.php?main_page=product_therapro_info&products_id=321668).

    We’ve tried all the standard oral-motor exercises…blowing bubbles, sipping through straws, licking frosting off lips, etc. Bridget is making progress, but it seems that the progress happens at her own pace regardless of what we do. I am learning to be fine with this. Just like Heinz ketchup, there are some things you just can’t rush :)…

  8. These are truly excellent comments, and insights. I wrote starrlife an email and I want to share similar thoughts here, too: I think we all struggle, to varying degrees, with seeing the ABILITY and not just the dis-ability. We’re fighting against the grain…so much of the world sees only the deficit, not the accomplishments. It’s a lot of work, but it’s good, good work, and so important. It’s wonderful to be able to talk about this.

    xo

  9. I’m thinking a PT or OT might be good for oral stimulation therapy? Also, just to let you know that I also go through the same angst about development – it comes and goes! I struggle and worry and then let go (follow my own advice:). At the age of your child I looked at how much my daughter expressed herself in so many ways, an interest in speech and all forms of communication and I just knew that, given exposure and therapy she would work hard to find the best possible way to communicate. I had excitement and fear/sadness if/when she would be able to share all of the neat things I could tell were going on in her little head and heart. So, believe me- I need all of you to reassure me at the times my perspective fails and I suddenly find myself looking through the distorted lens of DIS- abled!

  10. Thank you all for your input. 🙂 Seems immersion and signing are the two most common things you mentioned.

    Just to give you an idea of where she is: Mylie is 2 and says “Daddy” very clearly. She also uses several other “words” consistently though they would not be understood by someone outside the family since they sound nothing like the actual word they represent. But her consistent use of that particular sound for a certain item counts as communication in my book! 🙂 Other than that, she babbles a LOT. So I am hoping that soon she will have a “breakthrough” and begin using some other “real” words.

    Mylie started speech therapy before she was 1 for oral motor needs and feeding issues. We had a wonderful ST, Kim, who was well-qualified in oral motor therapy. She was fantastic! Last week, she transferred to another office about an hour or so away. I learned so much from her and am SO sad to see her go. I am trying to find someone else who is trained in oral motor therapy – not just speech therapy, but am having a difficult time. Kim feels that Mylie needs extra help with her muscles in order to improve her eating skills (chewing/swallowing) and, of course, to facilitate better speech. In the meantime, we are continuing regular ST – just not with someone who specializes in oral motor therapy. (I hope I am making sense.)

    We do lots of talking to and with her, reading books, pointing out objects, etc. Her 3 older siblings love to “help ” too. 🙂 Signing is coming slowly, but she does a few of them on a regular basis, and has made up a couple of her own too. I love that! We do not have any of the Signing Time dvd’s – I will have to look those up. And Kindermusick sounds fun too! We love music in this house. We all sing and we have music in lots of our day to day activities. She has developed a love for music too! In fact, that is one of the signs she made up first. 🙂

    So, in conclusion…I guess I just need to be patient and enjoy this phase while working on bringing her along to the next. It is hard for me to see her so far behind in that area when she is so NOT far behind in others. So maybe I just need to relax about it and not be too concerned. Right, starrlife??! 🙂

    You all are an encouragement and a great source of ideas. I love reading your ideas on various topics. Thanks for your input!
    And thanks, Jennifer, for opening up this discussion. I REALLY need to get a copy of your book!! I’ve heard so much about it!

    Hugs to you all,
    Mylie’s Mom

  11. We aren’t at the point of speech therapy (ours is more of an occupational and physical therapy need since our daughter is so young), but I found this very interesting.

    I agree with the whole “emersion” approach, as my now 4+ year old daughter was in speech therapy for a year because she was delayed in her speech. I remember the speech therapist using a piano, toys, and even foods to help work with her.

  12. What Heather said reminded me. My daughter loves musicals and I find that she memorizes the words and is much better at singing words (altho pretty tunelessly I might add). I’ve always justified TV, PBS and Noggin, as a way to boost her language- the sheer repetitive nature of it- the ability to just focus on watching, visual so strong- really has helped I think. Not just entertainment or electric babysitter,lol. Even the Wiggles, as weird as they are!

  13. We recently got a communication device for our 3 year old. It has been tremendous for our family; he is really starting to say a lot of words. Actually, our son, Aidan, is featured in this month’s newsletter for Prentke_Romich, the company that makes his device. You can read it here: C:\Users\scotte\Documents\slytherin_library\Down Syndrome\AAC\Prentke Romich Company – January 2009 Succeed.mht

    Before the device we used a lot of sign language, which our whole family had fun with. We also currently use sight reading with him (Edmark), and he can read about 75 words. He is able to say many of his sight words really well. It seems like seeing a visual of a word helps his speech.

  14. By far the best thing we did for Morgan as a toddler for her initial speech development was Kindermusik. She learned her first words from singing them in songs in her class. I highly recommend it! She has quite a vocabulary and speech development for a 6 year old!

  15. Speech is a very complex task I’ve learned. My daughter is now 9 and she has always been very expressive in many different ways. She is just starting to speak complex sentences and thoughts but we’ve noticed that this ability waxes and wanes for no good reason, things she knows seem to get undone and then backagain. Her progress is uneven but steady in terms of making gains over time. I totally agree with the whole communication philosophy and having a rich life with as many tools for communication and expression of self and thoughts as possible. patience and letting go of outcome is helpful for me.

  16. “Molly, our fantastic speech therapist, explained it to me best–it’s a whole language approach. Total immersion in communication, in all forms. It’s been wonderful, and I can’t stress this enough–so much fun. That’s been key for us–learning happens when it feels safe, and supported, and fun!”

    I agree with wholeheartedly with this paragraph and I believe it is the same philosophy we have in our home. Encouraging activities that Gabriel likes to do and using those as the springboard to learning speech has worked for us. Recently, Gabriel has begun to tolerate some television (Max and Ruby), but up until this time, he’s been focused mostly on reading and playing (with us mostly, but his independent play has been increasing). All things we do with Gabe has enhanced his understanding greatly. And ensuring we have sign language as a backup tool is key, I think, to clearing any frustration and providing more learning opportunities.

    As Gabriel grows up, (he’ll be four years old in April), I’ve realized how important it is to value what he knows and to compare him only to the goals he’s already achieved. It’s not easy because when I see his peers in preschool, there is a definite gap in expression and language. And it’s hard not to compare him, and then to have him “perform” what he knows to appease our concerns that some people underestimate him.

    This first year in preschool has been quite an education for me. Every week, Gabriel is talking much more than I had ever anticipated at this time in his life. And I’m grateful. Everything now seems to be meshing together, and because of this, I’m able to relax more and to take cues from Gabe. That’s probably the most important thing for our family right now.

  17. We are into Signing Time as well. It actually has become something of a hobby for our entire family, and one I don’t see going away any time soon because as much as it started as a help for my little girl it has turned into something that we enjoy learning and doing as a family. The fact that our daughter with Down syndrome has made up her own sign for signing time makes me know she loves them since she asks for them.

    our 18 month also LOVES the Love and Learning DVD…I’m going to buy more of them because she likes them so much.

    And, we do Speech Therapy.

  18. We didn’t really do anything special with Nick aside from ST, just treated him like we did his older sibs. I was just so overwhelmed with everything and sometimes felt guilty about it.

    Nick’s first ST as a way of introduction said something along the lines of “I’m called a speech therapist but really I’m a communication therapist.” A great philosophy.

    We’ve always included Nick in everything, as much as possible. He has an active older brother and sister. So, he’s been dragged along to their various activities since birth and bothered their friends when they come over.

    Nick loves the Signing Time DVDs and watches them a lot. His ST at school recently praised his signing and asked who’d taught him. He knows so many signs and improvises when he doesn’t know one. We are also all big readers, so he’s been read to since birth. Some of his first words and signs were book & read. He recently said to me “Read me a book.” I was amazed. Nick also loves music and singing.

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