Anyone who is familiar with apraxia is also probably familiar with Nancy Kaufman. She is a guru of sorts when it comes to treatment for apraxia. When I first started researching apraxia and was trying to figure out our next steps, the Kaufman Clinic and her Speech to Language Protocol (SLP) kept popping up. I was intrigued and of course wanted to learn more about anything that could help my son

I attended her conference this past April and it was like light bulbs going off all over the place! The videos she showed of patients in treatment reminded me of Henry and her methodology of gaining speech made sense to me.  I was hooked. I purchased the Kaufman Kit 1 and then proceeded to go about putting together a video of Henry for a video consultation with Nancy.

If you go to her website, www.kidspeech.com, it has details as to the requirements for the consultation and what they wanted included in the video. Once they receive the video, Nancy herself would review it and then call you with treatment suggestions and talk to your SLP as well. I thought this was a great deal for $80 and insight from an expert could only help. It would also give us an idea if he would be a good candidate for a visit to the Kaufman Clinic, which we were considering.

We hit a wall when first trying to make the video.  The type of video they want required more structure than the therapy sessions we had at home with Birth23, which is our early intervention in Connecticut. They use an at home play based model for therapy.  I tried doing some filming, but it wasn’t very effective.  One reason was Henry has basically free reign of the house and is hard to catch him face front on screen. The second reason was our SLP with Birth23 hasn’t been successful at getting vocalizations out of my son. We hadn’t been making much progress. Luckily, it was also at this time we were finally getting ready to start private speech therapy. This was after fighting the insurance company tooth and nail to cover a few visits to start.

I was anxious to get the ball rolling for this video consultation, so even though it was only hist first month of private therapy, I filmed a couple of sessions. I was able to get the footage I needed and spent the next few days editing it to a good representation of where Henry was at with his speech.

I received an email response from Nancy within two days…and on a Sunday! I was so excited. I was rather desperate for information. She felt he was an excellent candidate for the clinic should we decide to visit and she had a lot of great detailed suggestions for myself and Henry’s SLP.  I received an email outlining these suggestions and then we had a follow up phone call that lasted about 15 minutes. Then Nancy also had a phone consultation with Henry’s SLP at a later date.

Here is an example of her observations with Henry:

• I would want to get Henry to be seated at table and chair and offer him toy reinforcers for each response to keep him attentive and motivated.
• I would work on his repertoire of consonants and only pair them with open, lax vowels to start, “ah, uh or eh.”
• For reduplication, I would work on baabaa, mama, dada, papa and gently touch his lips to stop him from giving more than two syllables.
• I would also work on the vowels that are more difficult in isolation with cues until he can spontaneously produce them with the cue.
• I would make a list of words in any syllable shape that contain his consonant repertoire with open, lax vowels only.  So, these would be the reduplicated syllables from above, and words like (if he can produce all of the simple consonants of /m p t b d h w n/) “pop, mop, net, top, pet, nut, puppy, mommy, daddy, done, one, wet, dot etc.  Keep the consonant paired with the vowel, and pull away the final consonant or vowel in the case of “puppy” it would be “pup-ee.”

Overall I’m really happy with the insight we gained and felt it was well worth the time and money.  I would highly recommend it.

I’ve been dreaming about attending this conference since the first time I heard about it months ago. Unfortunately financially it couldn’t be worked out this year considering it was across the country in San Diego.

So I gathered what bits of information I could from facebook and the apraxia-kids website. It made me even more bummed that I missed the conference. This apraxia journey can feel lonely sometimes… it’s not exactly a well known disorder so even when trying to share the struggles with the closest of friends or family, their understanding is somewhat limited. Imagine being in a room with hundreds of parents just like you who understand all of your ups and downs, and then to be surrounded by all of the experts in this disorder on top of it! Amazing!

One of the exciting things that came out of this conference in my opinion was the release of a new app for IPAD called Speech-ez. It’s part of the speech-ez program that already includes cards and various workshops.  Henry’s SLP had not heard of it so she is looking into further. I’m wondering how it differs from Kaufman and Prompt in its methodology. From what I could tell it almost sounded like a combination of the two, but I haven’t seen it first hand. I’m looking forward to reading more parent and SLP reviews when it’s been on the market longer.  We’ve been thinking about getting an IPad for Henry anyway, so it could be a good tool for when he starts school.

I’ve also heard about teens with apraxia being present at the conference. Four of them were part of a panel where there was a question and answer session and two read from one of the new children’s books presented at the conference. I think many parents of very young apraxic children have the same questions I have. We think about the future, maybe trying to look further down the road than we should, and yet we can’t help it. We wonder if our children will have reading and literacy difficulties, will they be accepted socially, and most of all, will they ever speak fully and clearly. You often hear about young children when reading about apraxia and about the parents and children after receiving a diagnosis. What I don’t hear enough of are the stories that share the outcome of years of therapy and hard work.  Aside from statistics, what is it like for these kids…these teenagers…these adults even?  Are they still in therapy five times a week? Do they have friends? Do they speak normally? Are they happy??  I can’t help but wonder. Maybe I’m looking just for the success stories and I know there are a lot.  I guess what I’m getting around to saying is, I think a teen panel at the conference was an outstanding idea and I wish I had been there. I’m sure it was very inspiring.

Next year the conference is in Boston… you can be sure I will be there!