Going rogue; how we found SFY

Beginning …..January 2011

The end of May, we decided not to replace the Dynavox. It was temperamental and their updated version was more difficult to program. To top it off, we could not afford to support it when Jess aged out of school. We could not afford to buy a $9,000 device every four years either. Because the Dynavox wasn’t user-friendly, Jess realized it was easier for her to use gestures. For us, the underlining problem with the Dynavox was when Jess had more to say, she had to navigate through too many layers, it got complicated.  She lost interest.

The Dynavox. This was taken when she first got the device. Notice hand over hand, this is so wrong

Back in January, Jess had been evaluated for other AAC devices. They said no to PQ2G and  I don’t recall what they suggested, but they definitely did not recommend using an iPad due to her poor fine motor skills,  and her distractibility.  Even so, the only thing I had seen at this point was Proloquo2go.  Something about it seemed not appropriate for Jess who was now 20.

We decided to leave the structure of school and have Jess attend an occupational training center (OTC). This is where Jess spent her last year of “school”. She was under the tutelage of a para who was overseen by a teacher that technically only had to visit once every eight days. We were so exasperated with our situation; the para was not well supported and was given little guidance from her teacher.

The only communication Jess could do was gesture. She understood some sign (using the sign for no is still very convenient), but Jess could only approximate signs. Most people do not know sign, much less her modified sign language.

School gave her a piece of paper that said: “Yes, No and I don’t know”. It would be an understatement to say that frustrations ran high for everyone involved.

IMG_9199After many meetings, our school decided that they wanted to bring her back to the beginning. Even though she had an augmentative device for ten years, they came to the conclusion that it wasn’t successful because Jess had gaps in her education. They decided that she would have a PECS system (picture exchange cards). They chose this method because they felt they had to deal with her behavioral issues and that this method could help her through her behaviors. I did not agree. I was of the opinion that Jess needed a speech system, however, having a 20-year-old use a velcro picture card system was not appropriate and that they were underestimating her. That this wasn’t something we could use in the real world. You see, this is Jess’s last year of “school”. We were all scrambling to figure out what to do.

Unfortunately, in my opinion, the PECS system was not efficient. The school insisted that this was the path to take. I kept asking for a speech therapist to work with Jess. They said that their behavioralist was a speech therapist and that she was certified in PECS. (later at an IEP meeting when I asked for documentation, I was told that “I misunderstood…that she was only certified in PECS). Jess was given a red PECS book. That had a dozen cards. The book had “another child’s name on it”. This system didn’t give Jess enough language and she was still frustrated. When I researched the system, I found that it takes an average of 246 trials for users to master the six phases. This would require working with the child five times a week. That equates to some 40 weeks and we didn’t have that kind of time. Progress was slow. Jess was not excited about this. Probably, because she had been there, done that.

PEC's book

PEC’s book

They started her out with a dozen words and eventually grew to 20. The problem was, Jess had too much language, more than could be supported by  PECs.

Out of sheer frustration, I made a pointing book. It was easier to use because the words stayed in one place. With the PECs, the pictures have no such order. When Jess couldn’t find the word in her PEC book, she would use the book that I made. School HATED this. We fought. It got ugly.

Pointing book

Pointing book

When Thanksgiving rolled around, we planned a trip to Florida to be with family.  There was no way Jess was going to travel with her PECs book. This is when I made her a communication necklace using  word symbols,

PEC's necklace

PEC’s necklace

This necklace had six cards using the front and back to say: My name is Jessie/ I use symbols to communicate, Hello/goodbye, Yes/no, I’m thirsty/I’m hungry, Leave me alone/bathroom and help.  How cool it was for Jess to be on the plane and be able to request a drink when the stewardess came by.  If school hated my pointing book, they HATED this necklace more.

Upon our return from our trip, I had a two-hour phone conversation with Jess’s case manager. Finally, I said, “okay, I give up, I will agree to fully support the PEC system, but you have to make all the words that Jess is using in her pointing book”.  They agreed and asked me to make a list.  I stopped counting when I got to 200 words. The school never made the PECs.  We were at a stalemate.

From our experience, schools really don’t like parents talking to other parents. They don’t want you to learn about other services that are available, such as home support.  Services cost money. If you don’t know how to ask, you don’t get, thus you don’t cost your district $$. It took me till Jess was nearly aging out of school to realize that “unless it is put into writing, it doesn’t exist”.  Put every request in writing!

So, as my relationship with our school deteriorated, I realized I needed to network with families in our own community. Families that had experience dealing with our school system. The county school Jess had been attending was 25 minutes away.  It was difficult to connect with other parents. Let me digress. There was a core group of parents that were involved with the PTA, but when it came to our individual class, the parents typically did not get involved. For example, in the six years, my daughter was in the county Jr./Sr. high school, only one other couple attended Parent’s Night. The only people we knew in our hometown were either people from church or people that we had grown up with.  We’d been living in a bubble.

In early December, I did indeed meet two Moms. Through them, I found much-needed support. They both had fought the school. They both understood what was at stake. One of the Mom’s told her therapist our story and she, in turn, said: “I know this great SLP who is a whiz with AAC, I’m sure she can help you”. This was when we met Heidi. Our world changed when she introduced us to Speak for Yourself (SFY).

We had our first meeting with Heidi before Christmas break. I nearly canceled this appointment. Jess just had her wisdom teeth removed and was home recuperating.  The night before the meeting, I looked at the lite version of SFY. It gives a very basic idea as to how the program is set up, but since it is unlike anything else, it’s hard to appreciate how powerful it is. At first glance, the buttons appear small and Jess couldn’t isolate a finger, why would I think she could do this? Then I read about the two SLP’s that created SFY. Previously, they worked as AAC evaluators which meant they were well versed in all that was available. When the iPad became available, they knew that they could make something better. They knew what didn’t work with other programs, as well as what was needed. Thank goodness, curiosity kept me from canceling our appointment.

Heidi came on time, bounding in the house with an armful of iPads. We sat at the kitchen table. Jess immediately grabbed an iPad and began exploring while Heidi showed me how the program worked. There was a lot to take in but was not complex to navigate or program.

While Heidi was giving me her overview, Jess found the word “exceptional”. I turned to her and said, “yes you are exceptional”. Jess then proceeded to find this word several more times during this session.

What makes this fascinating is that there are 4,000 words Jess could have found. She got a reaction out of me by saying “exceptional” and this motivated her to find the word again.  Finding a word that doesn’t exactly have a picture icon that everyone knows means “exceptional”  is pretty impressive to repeat.  Heidi knew right off that SFY would be a good match for Jess, but I was too uneducated to understand what I just witnessed.  However, suddenly this all made sense. Jess had access to words that no one would think to program for her. For Jess to have the ability to find the words she wants makes communication that much stronger and encourages her to connect. Up until now, her world was silent. Now, she would have a voice.

Because of Jess’s interest, I immediately called our school and started the process. By the time they saw the program (early January 2012), it took them to the middle of February to get the iPad in Jess’s hands.  School had to approve the program as well as get an iTunes account. They would provide the iPad, but only till she aged out of school, then it had to be returned.


As of this moment…July 2014

July 22, 2014, Jessie waiting for her ride to work.

July 22, 2014, Jessie waiting for her ride to work.

In my opinion, communication is the foundation to learning. Without the sharing of ideas, one is left isolated. Within three weeks of having SFY, Jess said: “Mom, I love you”. In these last 18-months, Jess she has experienced phenomenal growth.  When she realized she had a voice, the behaviors faded away, her attention span grew, her fine motor improved.

We went from using a full-sized iPad with a homemade keyguard (my husband is an engineer and made a prototype. Unfortunately, the shop that he found to make this did not have the proper machines to reproduce more).  This screen guard made the iPad less sensitive. At the time, Jess did not isolate her pointing finger well. It had been our hope to make this available to other families, but we couldn’t get past the prototype with the vendor.

Home made key guard

Homemade keyguard

Presently, Jess is now using the mini iPad without a keyguard.  We had been hesitant to send the mini out into the community for reasons I won’t go into now. Mini-me is less bulky and doesn’t make her look like Flavor Flav

We are witnessing Jess achieve milestones on a weekly basis. She is becoming more independent and her world has grown. Thanks to a sophisticated AAC/SFY, Jessie’s future is bright.

Jessie ordering

Jessie ordering out