Monday, April 1, 2013

An Open Letter to the Parent of a Child with Speech Delays

Dear Parent of a Child with Speech Delays,

Good morning/afternoon/evening.  You may have clicked this link hopefully, seeing “speech delays” and wondering if I have some answer that will help your child.  You might be here through a googling session, during naptime or late at night or at work because it’s just eating away at you and the-time-to-act-is-now and what-more-can-I-do to help my child communicate.  You may have a kitchen drawer, or a shoebox, or a giant Ziploc bag full of tools: chewy tubes and bite blocks, z-vibes and jigglers, horns and whistles, and bubbles, oh my!

(If you don’t know what I’m talking about, and you are the parent of a child with a minor speech issue, like a lisp or a funny /r/ sound . . . then this letter isn’t for you.)

I am one of you, a tired parent of a child who was late (oh so very, very late, and she’s still taking her time, traveling the long, hilly, bumpy, exhausting road) to speech.  Like me, you may have 20/20 hindsight, realizing that the feeding struggles that appeared early on should have hinted at the oral-motor weakness and disorganization that lay ahead.  Or perhaps sounds and speech made appearances, only to fade away and leave you wondering if they ever really happened in the first place.  You may look back on the times that people complimented your baby for being “so well-behaved and quiet!” with a combination of wistfulness (because back then you didn’t know) and angst (because back then, should you have known?).  You may wonder if things would have been different if you had spent more time sitting face to face with your child and practicing sounds, should you have done more, do other parents do more, how-was-I-supposed-to-know-what-more-to-do.

The truth is simple: there’s nothing (in the realm of normal parenting) that you could have done.  And once you identified a speech delay and started with the exercises, the dramatic enunciations, the games . . . well, you were already going above and beyond what a “typical” parent has to do to help their “typical” child develop speech. 

Anyway, back to your speech delayed/apraxic/dyspraxic/nonverbal child.  Your child may have some speech, just less than he should. Or perhaps she has a handful of sounds, but nothing intelligible to anyone (except for you, her parent, of course).  Maybe your child is young enough and delayed enough that they don’t have much of anything (so well behaved and quiet, indeed).

Maybe they are on the road to speech.  Maybe they aren’t yet.  Maybe they just aren’t, end of sentence.

If, in your quest to help your child communicate, you haven’t yet tried something besides speech therapy (as in, therapy aimed at producing and refining oral speech), the time is now.

Please, let the time be now.

My daughter, Maya, is almost 5 years old. She can clearly speak approximately 15-20 words.  With her talker (an iPad with a communication app) she can speak approximately 700 words, with thousands more available at the touch of a button if she needs them.  With her voice, she can say "Mommy" and "Daddy". With her talker, she can tell me that today is Friday and she’s going to the therapy gym in the afternoon and she wants to ride on the big swing and the tire swing and do an art project.  With her voice she can say “bus.” With her talker, she can tell me who she sat next to at school and what they talked about and what she wants to have for dinner and whether she’s feeling tired or happy or cranky.  With her voice she tells me “no.” With her talker she tells me “No way, Jose.”

With her talker, she tells jokes and is sassy and is proud, so proud, to tell us things and to connect with us.  If she only had her speaking voice, I would barely know her.

Maya & her talker (photo by Keith Wagstaff,

As we have spent the past three months searching for an ideal kindergarten for Maya, we have seen many (many) schools and met with numerous doctors and therapists for evaluations.  We have heard, over and over again, “I’ve never seen a preschooler use a communication device the way that she does.”  I have seen (too many) K/1/2 classrooms populated by nonverbal kids where I am told that certain children "are learning to use communication boards" or "have just started learning how to use an iPad app to communicate" or "will soon be evaluated by the assistive technology team and will probably start using a communication device in the near future."

This is not because these children needed to wait until K/1/2 to be ready to use a communication device.  This is not because preschoolers aren’t capable.  This is because most preschoolers (and pre-preschoolers, frankly) don’t have the access to the augmentative and alternative communication (AAC) that they need. And, not to put too much pressure on you (since I know that you have so much on your plate, and raising a child with special needs is overwhelming, I know) . . . but you’re the one who needs to make this happen. 

It’s on you.

It’s on you, unfortunately, because this is a rapidly growing field, and the therapists/teachers that you work with might not be aware of all of the new stuff out there.  It’s on you because speech therapists carry giant caseloads and aren’t technically required to be highly educated about or suggest AAC .*, **  It’s on you because the special needs schools and teachers won’t meet your kid until kindergarten, and then will spend a few months getting to know him before requesting as assistive tech evaluation, and now your kid is 5/6/7 and frustrated and acting out (or worse, shutting down).**  It’s on you because the preschool teachers/therapists have never seen a little kid on a big, total communication device/app and wouldn’t even think to suggest anything outside of a communication board or PECs, because they aren’t even aware that that’s a legitimate possibility.**

It’s time to expose your child to AAC, to give them alternative ways of communicating. If you haven’t heard of AAC, it's awesome, and I’m going to walk you through a few options in just a minute.  If you have heard of AAC, but haven’t tried it yet, I’m going to take a paragraph to dispel a few of the concerns that might have caused your hesitation.

First, the use of AAC will not prevent/impede the development of speech. Here are a few links and research that disprove this fear, and an important study that showed babies who learned sign language simultaneously with speech developed speech at the same timeline as a control group and ended up with larger vocabularies.***   Second, your child doesn’t need certain skills, understandings, or cognitive abilities to start using AAC.  You don’t wait for a baby to become skilled or “smart enough” before you speak to them . . . there’s no need to wait any longer to start modeling AAC use with your child.  Third, you don’t need to wait to see if maybe speech is right around the corner---AAC is not a “last resort.” Speech will keep on progressing alongside of the progress made communicating with the AAC system.  Fourth, your child does not have to be older!  We started toying with different things around 18 months, and I wish that we had started earlier. We had to switch systems a few times before finding the perfect one, but the work that we did from 18 months-3 yrs laid the foundation for when we found her perfect system at 3.5 years.  Start simply, start small, just get started already.

Are you convinced yet?  Think for a moment of what it would be like to have to rely on speech for communication, knowing that you couldn’t get any sounds out that made sense.  Imagine that you were in an accident that rendered your voice useless and landed in the emergency room . . . people talking at you, asking you questions . . . what would you do?  Hopefully someone would bring you a piece of paper and a pen . . . you know, an alternative way of communicating, a way in which you could be immediately successful while waiting for your voice to heal.  Your child needs the same.

So where do you go from here?

1. Talk to your speech therapist about AAC. If they don’t know much about it, talk to other speech therapists, or teachers, or a developmental pediatrician.  If you can’t find answers call a special needs school in your area and talk to their speech therapist.  If there’s a local children’s hospital or therapy center, talk to them. If you can find a support group for parents of kids with special needs, speak to the person who runs the group.  Post on local message boards asking for the names of top speech people in the area. If there are advocacy groups for people with disabilities in your area, talk to them. Don't be afraid to reach out to groups that serve specific disability populations (groups for children with cerebral palsy, Down syndrome, autism, etc) even if your child isn't a part of that population-these groups generally want to help families, regardless of your diagnosis, and may be able to steer you towards good resources. Keep asking around to see if you can get referred to someone in your area that knows about AAC/assistive technology and can point you toward a local expert or resources.

2. If your child has an IEP/IFSP, speak to your caseworker or the official in charge of the document. (You might want to work with your child’s preschool/school on this, if they are already school age.)  You want an assistive technology/augmentative communication evaluation, and you want to request it, in writing, immediately.   (I’m not sure if different states have different processes for these things. This is a good topic to discuss with the people/groups that you found in point #1.)

3. If at any point in Step 1 or Step 2 a professional indicates that they don’t feel like your child is ready, that they aren’t familiar with multiple options (example: they say something like “Oh sure, we have several children using -insert app name-,I guess we could try that” instead of actually creating an individualized plan), or they seem otherwise resistant, then proceed onward to the next steps.  You’re going rogue.  You’ve got to take the lead on this yourself. You need to get educated so that you can do it correctly. You can do it. (I had to do it, too.)

4. It’s time to hit the internet and read about AAC.  Join (or peruse) a message board/online community for parents of kids with special needs, kids with speech issues, kids who have apraxia, etc. (yahoo groups or babycenter groups might be a good place to start).  Use google.  Look for some general posts/articles about AAC---good buzzwords would be: PECS, picture cards, Boardmaker, communication boards, communication books, PODD books, AAC devices, AAC, AAC apps, communication apps.  Read other people’s stories, learn about how children use different types of AAC.

5. In conjunction with #4, search YouTube. Look for videos of kids using different communication systems.  Use the same buzzwords that I listed above.  See that it’s possible, see the different skill levels.  If you think “my kid couldn’t do that” just remember that most people don’t upload the videos of all the times that it didn’t work.

5 and a half: It's time to remember that this is a marathon, not a sprint. You might be reeling from too much information. Take a night off.  Then get back at it.  Go slowly, but keep going.  Now that we have a system in place, there are entire months in which I am not purposefully researching, just modeling and working our system. Then I start reading again.

6. Realize that you’ll probably end up trying several things, and that’s ok.  Here is a list of things that we tried with Maya, along with links that will take you to blog posts (most of which have pictures and/or video) so that you can see we’ve tried many things, too:
edited to add that we also did a 6 week trial with a Dynavox Maestro communication device. Clearly (as I forgot about it) it wasn't the best fit for us, but it great for many others.
7. Realize that AAC is really, really individualized. It is not a one-size-fits-all operation.  It’s possible that you saw something in #6 that seems like it could work for your child, or that what you saw gave you an idea that would need some tweaking, or that you saw nothing helpful at all.  That’s ok.  Some children start AAC with a high tech device/app, some start with a simpler choice-based app, some start with a communication board, some start with tangible cartoon picture cards . . . some start with laminated photographs of actual objects . . . some start with using the actual physical objects themselves (and if your child can't use their hands to point to cards/pictures/device, don't worry, then there's eye gaze technology).  Any starting point is infinitely better than not starting at all. (Prior to picking a system I recommend that you read some of the research and opinions of the people that I mention in #9--they may guide you toward some of the more sound, research-tested options. If you're going with an iPad app, Jane Farrall's list is a good place to start.)

8. Once you find something that seems like it might be worth trying with your child, it’s time to learn about best practices and how to start using it.  Picking out an AAC system seems like the trickiest thing ever, until you have it in your hands and realize that now the tricky part (so-what-the-heck-do-I-do-with-this-thing-now) starts now.  For me, the most important lessons (and reminders) have been about modeling and waiting and using core words as soon as you can.  This was my take on modeling & waiting.

9. Find out who the experts are and read their stuff. Research papers, websites, sites that mention them, etc.  Go hear them speak if you can. They will teach you about best practices---how to use your child's system with them, get them to embrace it, and teach them how to communicate. Here are some people who know their stuff, inside and out: Linda Burkhart, Cathy Binger, Karen Erickson, Jane Farrall, Carol Goossens', Gretchen Hanser, Katya Hill, Jennifer Kent-Walsh, Janice Light, Caroline Musselwhite, Gayle Porter, Gail van Tatenhove ****

10. Find some good AAC blogs/resources, follow them on Facebook/twitter/Pinterest, and don’t be afraid to reach out.  On Facebook I particularly recommend PrAACtical AAC and Lauren Enders---both are very active and share tons of articles and links.  I also like the core word suggestions from the Center for AAC & Autism, and I follow several apps--including the aforementioned Proloquo2Go and Speak for YourselfIf you want to find people to follow on Twitter start following the hashtags #AAC #augcomm #SLPeeps #ATpeeps. Some of my favorite twitter users (tweeters?) are: @CommGreenhouse @USSAAC @parkerrobin @ISAAC_AAC @janefarrall @SpeechTechie @speak4AAC @sayit_any_way   (Oh, and our FB page is Uncommon Sense Blog and my twitter handle is @UncommonBlogger) ****

11. A few other possible helpful sites:  YAACK, Speaking of Speech, AAC at Penn State, AAC Intervention, AAC Kids@PSU ****

12. For extra motivation from a parent who went against the advice of various professionals and fought to get his daughter an AAC system, read Schuyler's Monster: A Father's Journey with His Wordless Daughter  Besides being interesting and motivational, it's also just a good book (and I'm picky about books, so when I say "good" it means entertaining, witty, and solid from start-to-finish).

13. *This step is important* Remember that I am just a parent. I am not a professional. I am the mom of an adorable nonverbal girl who went out into the great wide internet in search of a solution that could help my kid communicate.  (although while I am "the mom" I'm not "just the mom") This blog post is the closest I can come to a master list: the reasons to try AAC as soon as possible and all of the steps/tips/tricks that I can think of giving someone who is newly on the road to AAC.  Undoubtedly, I am leaving things out (and I’m hopeful that some wise professionals and parents will fill in the gaps by leaving helpful tips and resources in the comments section of this post--please!).

Good luck.  This needs to happen.  You have to try.  The internet is wide and there are resources out there.  And the first time that your kid "says" something through AAC that they aren't able to say with their speaking voice, all of this work will be totally worth it.

A mom who wishes that she knew earlier

* Per ASHA, in their position paper on the roles/responsibilities of SLPs with regard to AAC

**If you are a speech therapist, preschool teacher, preschool therapist, kindergarten teacher, or elementary school therapist who read this paragraph and thought “Hey lady, wtf? I’ve been suggesting that stuff for years!”  . . . well, thank you.  Thanks for pushing our nonverbal kids who are capable of so much more with regards to AAC and assistive tech than most people give them credit for.  This paragraph is about the others---who are, unfortunately, the majority that I've encountered.

***Holmes, K. M., & Holmes, D. W. (1980). Signed and spoken language development in a hearing child of hearing parents. Sign Language Studies, 28, 239-254 and Daniels (1994), in “The Effect of Sign on Hearing Children’s Language”

****Undoubtedly I have forgotten some amazing people/websites here.  Please, knowledgeable folks, remind me (and everyone) who else we should be reading/following in the comments below.


Alli said...

Every single time I read your blog I find myself shaking my head in agreement, screaming YES! in my head, or relating to your story. Thank you for sharing your experiences on this journey. Your honesty, shared resources and explanations have helped tremendously. I came across your blog when I knew my twin 2.5 year old boys NEEDED more. We were using PECS and they were rocking it but it just wasn't enough. I wanted them to have a voice. I followed your experiences with Maya and it gave me the HOPE and determination to start working with my boys to find a system that would work for them. That was a year and a half ago. At 4 years old they both are successfully using AAC (for us it was proloquo). They have recently started to develop some verbal language while proficiently using their iPads to share their thoughts, wants, needs and even a handful of jokes. Thank you for continuing to provide such great information. This is a valuable post for those just entering the world of AAC and also those of us who have been here for some time.

Thank you for sharing with us!


Marissa said...

Thank you for this. I am starting to realize that it is MY fear that is now holding us back. Yes, Atticus is only just 1-year adjusted. And yes, his fine motor skills are almost as poor as his oral-motor skills. (He is exclusively tube-fed.) But he knows his name. He knows cause-and-effect. He knows which toys make which noises. I need to stop feeling overwhelmed. I know our ST with EI is useless, but I've known that for a year (and 2 therapists). Time to get on this.

Heidi LoStracco said...

Dana, this is excellent information as always! I shared it on our page, but also wanted to comment on your post.

I'm a speech-language pathologist who works only with children using AAC devices. (In full disclosure, I'm also the co-creator of the Speak for Yourself app).

One thing I would suggest is that if you are a parent of a child who is not talking, don't believe any professional who claims to know what your child wants to be able to say. We have heard (and read reports by) AAC evaluators who say that the child only wants to say 8 things so he doesn't need a system with more than 8 buttons. If you only ever give a child 8 buttons, that's all he will use. If you have guessed wrong about what he wants to be able to say, he won't have any way to tell you, and he may not use the 8 button system. You may say, "AAC didn't work for my child," but in reality, it may be that expectations were set too low, and your child knew it. Start with as little as one button, but set high expectations that they will need many, many more once they realize that language is powerful. Even if children are very young, plan as if they will be using the AAC system for the rest of their life. This will put your child in a position that allows his language to grow, whether he develops verbal speech or not. If he develops verbal speech, well, we have NEVER had parents that were upset when their child became verbal and didn't have to use the AAC system anymore. I think it's a safe bet that we never will!

Patty said...

THANK YOU!!!! A few friends posted a link to this on Facebook today, and it hit home. We started with AAC when my son was 4, and it is a long process for him (he is now 6). But he is able to communicate with me when he needs things and tell me how he feels, which is SO important. The SLP feels that he doesn't always understand, but I think he just gets bored doing the same thing over and over, so I challenged her to take him around the school and show him how to have real conversations with people he meets along the way. And you know what? He's only doing it exactly right 25% of the time, but that's more conversation than he'd be able to have otherwise, so it's good for me. I really wish we'd gotten started with this all even sooner. :-) But, FWIW, no one tried to tell me that he was too young, or that he wouldn't understand - they knew he needed it as much as I did.

Joanne said...

I really appreciate this post. It's because of you and Maya that I got my son an iPad and started working with him at all on it. I thought he was too young but he is like three years older than Maya, so after I saw what you are doing, I really felt like he could too. I also think he should start working with an AAC device and I have sent this link and well as a link to a youtube video about an eight year old with autism who has had great success with it to his Program Manager at school. The only thing I am taking issue with is that I don't agree that just because someone doesn't talk to you, that you would barely know them. My son doesn't talk too much to me but he does communicate a lot and I feel I know him pretty well at this stage.

Unknown said...

Thank you.......just thank you. I'm going to get started with the reading about this and make an appointment for an assistive tech eval ASAP. My son is almost 4 and doesn't say a word; he uses sign language, but I can't teach him stuff fast enough. This is probably where we need to go.

Robin said...

Thank you so much for addressing this issue. Hopefully more and more SLP's are either being trained in AAC, make as much effort as you to keep current, & also begin to understand what you so eloquently illustrated. This will be another one of your posts that will be required reading for my SLP graduate students so that they can help families be partners in the process of teaching AAC. Many (most)meaningful language experiences happen with families and that is why even with professional guidance (if it is found) families and clinicians must be true partners. Thank you again for sharing your experiences about your family and AAC

Maria said...

EUREKA!!! I LOVE LOVE LOVE this blog post and I MUST SHARE! As an SLP I am a HUGE fan of alternative modalities of communication and my encounter with parents has been the opposite in that I have spent many many weeks, months, and YES even years trying to get parents on board with trying AAC devices. Trying to get parents to realize a functional communication system right NOW will result in increased receptive and expressive language skills whether it be via their own voice or a voice activated device can be EXTREMELY frustrating to say the least. I've has many many parents actually make me write in an IEP that NO ALTERNATIVE means wills be used or supported in classrooms b/c no matter how many research articles I had given them, they believed if I wasn't working on speech output, the child would not talk. I LOVE this post b/c it is FROM a PARENT to PARENTS. You've been there, you've seen the other wonderful side of AAC and how it supports not weakens your daughter's ability to communicate!
NOW with all the wonders of the iPad/tablets and these AWESOME APPS we have technology that just a few years ago we had to wait for weeks, months for arrival after ordering from companies...spend weekends programming AAC devices and ONLY provide the child with AAC devices in the schools (b/c of the cost of the device and the loaning processes) which we all know is completely ridiculous as a child needs to communicate in EVERY environment! Here's the reality of the situation: Parents MUST BE WILLING to SPEND money on AAC devices/apps. They MUST be willing to purchase the device, or app that child will use. B/c if the school does actually get approval to purchase a particular AAC or app (which by the way would be like an act of GOD happening...the hoops one has to jump through is beyond ridiculous...and 6 months or more could easily be spent fighting for a child's aac app/device just to get a "NO" to our request) than the child would ONLY have access to it during the school day as it is school property. So parents HAVE to be willing to purchase the device. PARENTS NEED to be willing to spend money on their children...they NEED to get the ball rolling b/c in truth, we as SLPs WANT so desperately to move away from communication boards but without the parents support and fight for their own children we are stuck with the fairly primitive means of BoardMaker and sign. Your points are all very very true! Sorry for the sidebar but I really would love parents to understand how the school SLPs hands are tied and we really need PARENT support. I always tell parents...when in doubt you fight for your child b/c this is the only life he/she is going to get! As a communication specialist...I'll back you 100% and do whatever is in my power to support your child and you! Thank you again for this great blog post! Well said!

Emily said...

Hi! I'm a first year master's student in speech-language pathology and AAC is exactly where I want to be! I fell in love with it by working with non-verbal kiddos in an elementary school after college. This post is so spot-on, and I wish more teachers and professionals were on board with early intervention and really pushing hard for AAC. Thanks for all the links you provided; I can't wait to check it all out!

Rachel said...

Awesome letter. A must read by all parents with a young child struggling to communicate. Great job and thank you.

Amy said...

Thank you for your post. Our daughter is also 5 with speech delay plus gross motor, fine motor, and sensory issues. It's comforting to read about another family's journey. Blessings to you and your adorable, bright daughter.

IllusiveAnna said...

My friend linked your article on her Facebook page. Please know that you've made me cry (a good cry) and that I had no idea AAC existed, and my son has had speech therapy for the last year and a half (he's 3 1/2). Thank you, thank you, thank you. I cannot thank you enough. Seriously. I'm going to start following your blog, and I don't follow *any* blogs.

John McCarthy said...

Thanks so much Dana! As I think about the adults I work with who use AAC on a daily basis, they all have an incredible family support structure behind them. SLPs may be noted as positive influences in their backgrounds, but many times they are under the obstacles column too. SLPs, even the good ones, move in and out of children's lives, but parents are the constant. May I and my colleagues never stop listening to you and to all parents.
Thanks also for the mention. @sayit_any_way

Unknown said...

Thank you so much for posting this! The tips and advice in this letter are brilliant! A lot of moms and dads will be able to find this very useful and will be able to do something about their child soon--that's all thanks to you and your blog post. I hope a lot of parents will be able to read this and learn something from it.

VFieldNZ said...

WOW! This is a big post! Agree with you and wish it was THAT easy. I have been chasing this tiger by the tail for a LONG time. We have a good SLT but yep, we're still on picture cards, low tech books and most of that I have made myself. I have had limited success with AAC on my sons iPad. He just isn't keen on trying it so we've had to go back to basics and teach him the purpose of AAC and Low Tech communication. I would rather leap forward to the iPad but alas, its been a dismal failure with our son. He just doesn't want to get past the cause and effect features of ANYTHING on the iPad. I have tried the App you use with Maya and alas because of eyesight issues, my son just didn't get it. Believe me I have tried a lot of things, and as with his physical delays its just time and effort required. I seriously hope we get to where you are at now with Maya. My son is also 5 1/2 years old and non-verbal (he also dosen't walk or crawl).

Unknown said...

I actually wish I had read this about 9 years ago. My son is now 9. Because he had a rare disorder no one knew about they actually thought he would not speak. He really had no language until age 3. When he did start speaking it was intelligible due to hypotonia. In preschool they had recommended a Go Talk. It took so long to get, he was actually speaking before we had the device. Now he is extremely verbal and will not stop talking but it was a long road to that point. Still he has fine motor delay and we use the IPAD and touch screen technology for this issue as he can not write with a pencil. Still we have the same issues, no one can use or is trained in the use of the device and there is no expert in the area. We were seen at our state diagnostic center by the AT person that said give up using the IPAD and do just a functional curriculum and only use the IPAD for leisure activities. This is in a child that is verbal, can spell verbally but can not yet read. So I hear you. Wish there was more support and options and really wish I had started on this journey earlier. Many need to read and hear your info. Thanks so much. Leslie

Mommy Square said...

Bravo! I especially like the part's on you. Far too many times I see parents not doing all that they can. We started using iPad and an iPhone to assist our son as early as 2. It was amazing for him to be able to order at a restaurant and feel like his choice did matter and we did "hear" him. Now at 4, he is no longer non verbal but we are still battling apraxia (and winning). It is up to us to fight for them. Thank you for this post :)

Anonymous said...

Hi! This was very informative, and a lot to take in- in a good way! I'm a parent of a seven year old with (mostly) expressive speech deficits. Something I wish more people would touch on is the prohibitive cost of many AAC devices and the difficulty getting into the hands of low income kiddos. I can read and watch youtube but at the end of the day, if I can't afford a device and apps my son is still not having his communication needs met.

natasha said...

yes absolutely. iwas told my son "wasn't ready" for PECS...he sure was. I was told AAC would not make him less autistic -too true - but if he wants to tell me that "aunty has a purple car" ten times a day = well so be it. that is what eh wants to communicate and so he should. And as time has gone by his vocab and language has come on so much (he uses gridplayer running on ipad with personalized gridsets from Grid2; and mostly the predictive typing keyboard)

natasha said...

AAC is not prohibitive these days - you can get a refurbished ipad or ipad mini and a free communications app to get going.

Caroline Ramsey Musselwhite said...

So elegantly and delightfully and FORCEFULLY shared. Thank you so much! I am so very honored to be mentioned in this post!

Anonymous said...

Hello all- I am trying to figure out what/how/where to go with our non-verbal 3 year old daughter. We had almost decided to get a tablet with an App. Then I emailed her school to get teacher input- and found out she could not take her tablet to school (liability if broken), so they could provider her soemthing at school. I am thinking this will be very confusing- if she has 2 devices.


kate said...

Your blog was one of the first I found about speech delay. My son just turned 3 and has no words yet. I love your honesty and that you pour your emotions into your writing. I am the same way. Life is a roller coaster. Some days I am so sad about his delays. And other days I look at how perfect he is. Thank you. You give me hope and strength.

Box Hill Speech Therapy said...

You must feel extremely proud of yourself to receive such positive feedback from someone. Good work.

Anonymous said...

Hello. I see the use of AAC. However I am curious in the role of ASL. My son 2.5 autistic nonverbal (maybe apraxic,maybe hard of hearing)after a year of speech therapy has not progressed orally but has been signing. I immersed our whole family in the deaf community and we are all learning ASL and I spend the day signing to my son constantly. Now all of a sudden our speech program for the state university wanted to use AAC on him when he seemed to be responding to signs so well. I am not able to reconcile the situation right now as at home he is able to sign that his brother is crying and why he is crying and now I am painfully watching him two hours a week hand a card over to a speech student for juice when he can sign juice and sometimes make the initial j sound.

Tamala said...

I came across your letter while conducting a google search about delayed speech for a 3.5 year old. I am so happy to land here. Literally last week our new Speech Therapist wants me to get a script for an Augmentative Evaluation to get the ball rolling on an electronic communication device for my daughter. My daughter was a preemie born at 25 weeks gestation and has experienced several milestone delays. She has caught up to some, but is gtube dependent for food, receives occupational therapy with focus on feeding, and speech therapy. She has one word, bye bye. Everything else is inaudible babble, grunting and yelling. Yet her receptive language is that of a 2 year old. We are doing everything possible with walk in services through school and outpatient with the hospital. But now learning about this gives me hope that soon I can understand some of what my daughter is thinking. Thank you for being a great voice.

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Betsy Furler, MS, CCC-SLP said...

This is a great blog post!!! I am a SLP. I specialize in AAC - especially the use of iPads and other tablets. I am continually frustrated with many others in my field. Especially when I get a referral for a 40 yr old who is nonverbal and had never had access to AAC. Or a typical 15 yr old who happens to be nonverbal and has been sitting in Life Skills for 9 years without AAC. I could go on and on!!!!
I work with Please put use on your list of resources!!!

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Hi Dana, I have shared this post with every parent I know as well as all the members of both of my children's teams. We have struggled for several years with communication as we were steered by ALL the "professionals" we encountered towards the traditional route of speech therapy. Both my kiddos, five year old boy/girl twins, are autistic both with varying degrees of apraxia. After making zero progress with the traditional routes we always KNEW giving our kiddos their own voice (in whatever form) was job #1. Thank you for reaffirming that as parents we must "go rogue". We've used pecs, aacorn app, proloquo2go, and I'm now considering speak for yourself (especially after seeing your youtube videos of your daughter) I have just ordered the AMDi cases for their ipad mini talkers and am feeling very hopeful about the things I know I must do to help my kids really utilize their talkers more. Thank you so very much for putting words to the thoughts that have been rambling in my head for many years--and finally saying the harsh truth...that it's ON US. No one is going to make this happen for my kids besides me tirelessly working towards it with them.

sarah said...

If its ok I would like to share this with parents and teachers I work with

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My son and daughter-in-law have a sixteen-year-old daughter with Apraxia. She is intelligent, but has few friends at school. Is there an on-line chat room where my Ruth could talk with other parents of teenagers with Apraxia? Thanks! Peggy Walker in Kentucky

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