Hurry Up!

"Hurry Up, You're going to slow." Mary said as I bent over to strap her feet to the large foot plates of her adaptive bike. Gladly, I responded with "Okay! I'm hurrying!" It had been too long of a wait just to have that simple little verbal interaction with my daughter so I didn't mind the impertinence of her command. It has been a very long journey and one that I feel is important to share with others who may be struggling to find more meaningful communication opportunities with their non-verbal child. Mary was about eight when we finally got a communication device that would allow her to use the pictures she could understand to express herself in different daily situations.

Preschool Years
Mary first began using assistive technology during speech therapy. Several more types of devices were introduced after she started attending a developmental preschool. She was most successful using a two position device with real pictures to identify the people places and things she knew in life. She would be asked in school to choose a song for the class to sing or some activity in which to participate. At home she would choose the items she wanted to take in her lunch bag. We mounted devices on the wall for her to ask for help when she needed to go to the bathroom or when she wanted something to eat or drink.

Mary still primarily used gestures to communicate her true wants and needs. If she wanted to go somewhere she would get her "go bag" and stand ready at the door. If she wanted to go swimming she would get my bathing suit and bring it to me. She still to this day gets the dogs leashes out of the drawer when she wants to take the dogs for a walk. We always tried to find what motivated her and it certainly was not food. Mary had trouble raising her hand on command to wave "hello" and "good-bye". Physically she could move her arms but when asked to wave it was like she was frozen. Mary loves music and dancing and it was difficult to get her moving to the music. After much encouragement she would drop a shoulder, swing her arms, stomp her feet and clap her hands. It is her personal way of dancing. Clearly she has rhythm. She claps when she is happy and proud. She can make a sound which is usually a hum. But, when her mouth is open and she laughs, it is often too loud for the situation. The sounds she makes sometimes scare people who don't know how to interpret them as they do not even approximate words. There was never any DADADA or BABABA, and the MMMMMMM that she made couldn’t even be shaped to MAAAAA. She is such an intriguing little girl with so many unanswered questions.

When I had any free time would Google the Internet. I first learned about apraxia from the Internet and asked her therapist about it. Although her speech therapist agreed that there could be a component of apraxia she suspected dysarthria. When I mentioned dysarthria to her Neurologist, he said first and foremost she has developmental aphasia. As I researched each diagnosis I realized that apraxia is manageable, dysarthria is bad and aphasia is the worse. My child has all three speech disorders combined! How do you maintain hope with such a devastating prognosis? The person behind the diagnosis offers me hope. She is a lively, happy child that wants only to please. She wants to have friends but needs a way to bridge that communication gap. She needs a way to share her thoughts with other people.

We continued speech therapy and worked on a program that was recommended by a Consultant with state funded program. She advised to get a digital camera and make picture books of Mary's world. The first day of summer we started a book about going to Grandmother's house. We took pictures of the house and of grandmother and grandfather. We climbed in the tree house and took pictures of the ladder and the bridge crossing the pond. We took pictures of the canal and turtles and ducks in the canal. I made cards for her two position communication device to match the pictures in the book. In therapy Mary began to be able to identify the people, places and things in her books with significant accuracy. We took data and recorded the picture words that she mastered and by the spring of the next year we had quite an inventory of pictures and books.

School
I put everything on a CD and gave it to her teacher so that she could reference this while developing the next year's IEP. Her teacher congratulated me and the school's Assistive Technology department recommended a high tech device for her called the Mighty Mo.

The Mighty Mo was large and had good digital picture resolution but did not seem to have the language available to her. There were problems with this device, the school never allowed me to use the device at home so I can't really elaborate on the details of the problems she encountered with the device. After a two month trial they took the device away from her. Oh! the despair and frustration that ensued because I knew in my heart technology was going to be the only bridge for Mary and that if she learned anything in life it should be how to communicate.

Fortunately, I had access to other professionals and Mary's doctor recommended an assistive technology speech evaluation. We met with the speech therapist that specialized in augmentative communication on a couple of different occasions. Mary's private therapist came along and we were able to practice with a variety of devices. We even met with the Representative of one manufacturer and were provided devices to evaluate. I had received a loaner for a device that was recommended to me by the professional speech therapist at a local Non-profit organization that I was associated with through my advocacy efforts. After researching everything I felt like the device that was best suited for Mary was a device called the Tango. It was totally different than most of the augmentative communication devices on the market. It used what the manufacturer calls "Phrase First" language and had a built in digital camera and voice morphing capability. The phrases are built around everyday situations, like Morning talk, Bedtime talk, Mealtime talk. It was expensive but very easy to use. The evaluation was written and I presented it to the school. At the time, I believed that my insurance company would purchase the device but later found out that they would not. She was not receiving Medicaid benefits so I applied for grants and was able to fund about 90% of the cost of the device through grant money. And now it's Tango Time with Mary and Mom. We have a path to hurry down but we can only follow the pace Mary is capable of keeping. At least we have a path and can enjoy simple moments… talking.