Thursday, March 12, 2015

The boy who really, really wanted to talk

Max is a master of his speech app—he quickly zooms around on it, tapping symbols that speak words for him or typing out words and sentences himself. At school, his iPad is his main form of communication, although he also tries to express himself verbally. At home, he tries even harder to speak up. I think he expects Dave and me to understand him, even though sometimes we don't—but mostly, I think, this boy really, really wants to talk.

Here's a recent video with him discussing his favorite topic.  First he tells me he's going to Chicago on March 27, 2015. Then I misunderstand when he says "fire chief truck" (we found a retired fire chief who does organized tours). The rest is self-explanatory.

When iPads and speech apps first came out, I remember that—like many parents—I wondered if Max would get so fond of the speech app, he wouldn't want to keep trying to talk. Well, that sure hasn't happened. If anything, he seems more determined than ever to speak. In fact, the only time I ever see this kid get frustrated is when I don't understand him. All this is why I was blindsided by what the speech therapist told me at his recent IEP.

Overall, the education and therapy news was good. Max's reading is improving. Math continues to be a challenge, but he's working hard, same with social studies and science; the teacher is doing her best to bring the concepts down to reality level using hands-on activities, and involving as much repetition as possible (which is how Max learns best). He's been spoon-feeding himself well, learning to manipulate his pants during toileting, going up and down stairs like a pro and playing sports enthusiastically.

The speech therapist—a lovely, experienced woman who truly cares about Max—talked a lot about Max's growing ability to generate longer sentences and express ideas using a variety of nouns, verbs and descriptive words. When she'd had her say, I asked what I thought was a key question: What was she doing to work on articulation?

What she basically said was: Max's primary means of communication is going to be his iPad, so she believed it makes the most sense to focus on that, along with expanding his command of language and his perception of how conversation works. 

"But he really wants to articulate words," I said.

She noted that she wasn't, of course, giving up. But she also made a point of saying that the school has provided years of speech therapy to him and she didn't see much improvement.

A mix of anger, frustration, sadness and pure dejection washed over me, and it took a lot of effort to keep it together for the rest of the IEP. 

I do not have blinders on. Hardly. Max likes to talk about a lot of the same stuff (Chicago, fire trucks, his firefighter friend Angelo, mac 'n cheese), which is the main way it's easy for me to discern what he's saying. His speech isn't clear; as the IEP correctly noted, "Overall intelligibility is significantly reduced to the unfamiliar listener." I also agree that a speech app (or whatever new technological marvel comes along in upcoming years) will be his main form of communication throughout life.

But Max is only 12 years old and I know—if I know anything—that his potential for speech is hardly tapped out. The speech therapist who sees him on weekends is able to coax out consonants (his biggest challenge), including g's and otherwise elusive "k's" and "d's" plus final "m" sounds like "Mom." I called her later, distraught. "I feel like he has a lot of room for improvement," she said. "Don't lose hope. He has many years ahead of him to grow."

She noted that now that iPads and apps were so prevalent, there were therapists who were choosing to quit focusing on speech. I'm not sure how generally true that is, but it certainly seemed to be happening with the therapist at school.

Like many families of kids with special needs, we have relied on therapists over the years for coaxing the best out of Max and helping us best help him. For the first time in his life, a therapist was saying no can do.

Max gets speech therapy three times a week at school and just once a week at home, so school is his main source of speech guidance. I'm either going to have to supplement more at home, or figure out a way to get the speech therapist to agree to focus perhaps on just one speech goal—say, more d's—or, likely, both.

My first plan of action is to get an independent assessment from an experienced speech therapist who hasn't yet before worked with him; that objectivity seems key. And then, I'll take it from there.

I'm usually pretty indefatigable about getting Max what he needs. Bu this one's bringing me down. It's not just that I'd like Max to be able to speak more clearly—it's that Max does.


  1. I truly think that if Max wants to, he will, at some point. My son is largely non verbal, although as I always tell people, that does NOT mean that he's quiet, ha! His iPad and Pro lo Quo apps have definitely not made him not want to talk but for my son, I think it's so hard for him to get it together sensory-ways to speak that he spends so much energy on it that it's not worth it. If he's happy with the iPad, I'm happy too. But if he seemed to want to talk with his mouth, I mean, I can see wanting to move heaven and earth to get him there. I wonder if Max likes to sing? I remember reading that singing consonants is a lot easier than speaking them.

  2. You are strong, and by reading this I can see that you will never give up on Max and while this challenge may bring you down it will only help to open a new window and focus for both you and him. Words do not come easy to all, but the love you show will guide you through this.

  3. It's amazing how you really never do stop being an advocate. Even when you think you've reached a good level, something can come out on nowhere and there you are again...either convincing someone that your child CAN do that, or finding someone else that sees what you see. Max is very lucky to have a Mommy that never gives up.

  4. This will sound incredibly simplistic, and it is, but it can really help with inflection and pronunciation...and it's FREE! My son, also asd has gotten help with saying sounds with the youtube "Have Fun Teaching." You got to Youtube and simply put the letter you want to work with. Example, type, Have Fun Teaching Letter H. The video will pop up and you have your child listen and work on the letter sound with music (annoying music at times to me an adult but both my son asd and nt daughter both love) and my son attempts to make the sounds of the letters. It cannot hurt, but I think you and your son will fall in love with these free videos and it can help! :)

  5. I don't know this will help Max or your family, but I hope it will help at least a reader of yours. I have a 14 yr old daughter that had very complicated articulation and fluency issues. She does not rely on an iPad for communication, but she worked very hard to try to make her words be understood. She worked on articulation for YEARS w/o much success mostly with SLP's with a background in Floortime and autism/communication disorders. They were the best SLPs in Chicago and they just did not know what to do last year to help her. Last year, in 7th grade she hit her final wall of frustration and just retreated. She got pushed out of her social group at school, was not being understood by teachers and went into a deep depression. It was agonizing as a mom and to have her SLPs give up really on how to help her. She didn't want to do the work and "the work" they were giving her was not really working anyway. I started to think she needed someone that specialized in the psychology of communication. The only people that came to mind were stuttering experts. So I started looking for someone that specialized in working with teens and young adults as I knew she would need to develop a long relationship with a new SLP. I worked the phones and finally found someone that works with the whole family. The eval was entirely different than all of the others we have had in the past 11 yrs. My daughter finally got help through learning techniques to help her relax, breathe and develop strategies for when she hits a block or gets stuck. My daughter attended Camp Shoutout which a camp for stutterers last summer. Working with stuttering and fluency experts has been a game changer for her and us. We were taught how to support our daughter at home and how to talk to her teachers so they can help her communicate in class and outside of class successfully. to She started 8th grade with so much confidence and she is talking again and her teachers understand her! It is like having a new child. I wish I had thought to turn to this group of professionals earlier. It has been a long and hard road. There is so much they are doing to support communication that I wish other SLPs would get trained in, especially those that work with children with autism. Camp Shoutout attracts SLPs from across the country that want to be trained and they may be able to help you find someone in your area. We worked with Kristin Chmela in IL and I highly recommend her. Please reach out to me if you want to hear more about our experience, Ellen.

  6. WOW. This was the total opposite of what I was expecting. I totally agree with Joanne. I so get that HE wants to talk, but the educational system, the medical system, the therapy system, are set up for what's practical. Nothing stopping you and Max working on your own at your own pace, While focusing the therapist's time on language and communication via the app. Let's say that from 1 to 10, he's at a 5 on the app and he has the desire drive and intelligence to improve his app language so she thinks she can realistically get him to a 10 on the app. With spoken language he's at a 1 and progress, it sounds, is really slow. If she diverts her time to spoken language, he stays at a 5 on the app and MAYBE progresses to a 2 in spoken language. If she focuses on the app and does get him to the 10, and you and he work in free time and get him to 1.5. I hope this makes sense. I'm thrilled to hear a speech therapist embracing an app, I wish you both luck. Regardless of what decide to do, it sound's like you're doing a great job for you Max.

  7. Although I am verbal and articulate now (as I have been for as long as I can remember), I had (and still have, to some extent) difficulties with fluency. One of my main musical issues is not being able to find phrases. However, I am improving.

  8. I believe that as kids grow up and learn to advocate for themselves, it is vital that they have input into their goals. Knowingly or not Max gets this and should be given the tools and support to articulate more words while continuing to work with the speech app. He has to take the lead with his awesome advocating mom by his side.

  9. I thought about this post all day and wanted to just express my wholehearted support.

  10. This sounds frustrating! I am currently a graduate student in my last semester of a speech pathology program, and am interning at a center that provides therapy services to adults with disabilities. I am working with people ages 22-60, and depending on the client's wants and needs, I can tell you, I still work on articulation and improving all modes of language (speech, sign, gesture, pictures, speech-generating devices, etc.) through a total communication approach...and I continue to see progress even at ages where most people would probably think "if it hasn't happened by now, it never will". Don't give up hope! There are therapists who will help, I promise we are out there!

  11. Hi there - just curious what app you use?

  12. Oh it is so frustrating when you see something in a way that the professionals aren't able to see. Listening to him it is so clear to me that what you say is right...he wants this. My daughter is much younger and only has the "m" sound consistently...but I know she is "sayings" things (she also gets very frustrated!). You wrote about a little push in your other post. It seems like maybe the independent therapist will offer everyone the nudge they need for this too. Best of luck!

  13. That just makes me angry. And it brings tons of memories/examples from a journey with my, now verbal, son. Perhaps its just part of parenting a child with disabilities, when growth does not happen on schedule they are familiar with, a lot of specialist still will assume it will never happen. I've spent so many weeks in a daze after specialists made their life long predictions for my son. " He will never speak" " Its unrealistic to think otherwise" etc. ( severe disarthia with ASD) The only support came from other parents who were farther along in their journey: "they just don't know- they don't have the magic crystal ball, even though some act as if they do - you know your child best". So fine, he had to be thought how to make every single sound ( eeee vowel took 5 months, the app Speech Stickers really helped to mix up the therapy). In desperation , I became the speech therapist camouflaging speech drills as fun games thruout the day.
    resources that helped us: Kaufman (K-SLP) Treatment Kit 1 – Basic Level , Pam MAshalla vowel tracks CD- and overall her website, the app Speech stickers- got us the long eeee. and the ABA therapy methodology of repetition. Looking back, 90% of me believed that speech may never happen for us, yet the other 10% saw no harm in keeping on trying. Best of luck to you and all other parents.

  14. Hi Ellen, I'm so sorry to hear that you've hit this bump in the road. It makes me angry when the professionals charged with helping our kids just want to give up on them. Sure, I understand, it's hard and sometimes it looks like our kids are plateau-ing. But I want to tell you that when I start my blog over at Autism's Edges in 2005, our girl was seven and her teachers (at an exceptionally good private special education school) told us that she wasn't learning to read and that she wasn't likely to.

    I was despondent, angry, at the end of my rope emotionally, but simply determined that she would learn to read. I decided to trust my gut -- that they might not know how to teach her to read, but that she would read. We consulted a specialist, as you're planning on doing. We put in place our own reading program at home. And wouldn't you know it, in 4 months she'd gained a year of reading proficiency.

    Just because the professionals at school don't know how to help our kids talk, or read, or do whatever, doesn't mean our kids won't do whatever it is they need and want to do and more -- much much more. Our girl is now looking at colleges. She's passing her standardized tests. They were wrong. They were ready to give up. We don't give up. That's how we roll. Hope you're feeling better soon, and that Max gets all the language and articulation support that he wants and deserves! I know you won't give up, but try also, not to get down. xx


Thanks for sharing!

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