By Annie Wade, Parent, Tulia, Texas
Editor's note: Many of you will remember Annie from the video "Power of the Heart". This 1987 video is often shown to university classes to demonstrate effective ways for parents and service providers to work together. Recently, a professor from Ball State University in Indiana contacted me to ask, "What happened to Laurie and her family?" I connected her with Annie, who is now a TCB children's caseworker in Amarillo. Then it dawned on me that perhaps others would want to know what happened to Laurie; so I nagged Annie until she agreed to write an article. Annie is too modest to tell many people that she was the first editor of this newsletter when it was still called P.S. News!!!, and one of the first Outreach Family Support Specialists! Thanks, Annie (and husband, Garland) for taking the time and emotional energy to once again to share your life.
Laurie is flying home from Dallas for a long weekend. I arrive at the air terminal almost an hour early to wait for her plane. Mental pictures race through my mind, and I shed tears of joy at how far she has come since the day she was born almost 32 years ago, deafblind multihandicapped. I can visualize that sweet baby lying on the carpet, flicking at the sun's rays filtered through the living room window, a victim of an awful circumstance. It was so easy to love her in that contented "world of her own" knowing little, completely dependent, and caring less. We pondered. Is this all there is? Can there be more? If so, how much more?
I think of the surgeries when I watched, as my baby had to be restrained to prevent injuries to her eyes. Her dad and I rocked a million miles with her arms in restraints being held under our arms, because she could wiggle out of the restraints. Then, there was eating. It took years of consistently presenting foods and cleaning up messes, manipulating, self-feeding and chewing, frustration on the part of mom and Laurie, therapists and teachers. Eventually, Laurie learned to feed herself and eat a variety of healthy foods. Of course toilet training was really fun. There were two years of putting Laurie on the potty-chair every 30 minutes and charting every occurrence. The toilet chair went in the back seat of the car and even on the airplane to a conference (which we borrowed money to attend) so Laurie would have "her" chair. Consistency was the name of the game. Laurie really didn't want to sit on the potty-chair. She tantrummed and beat her head. Her dad had to leave the house. It hurt to hear her screaming and to know what she was doing.
It hurt to teach Laurie, both physically and emotionally. She wore orthopedic shoes and kicked the shins of the person sitting across the table when learning table tasks. Laurie had no desire to learn. She preferred to be the victim, lie on the floor or the bed, and engage in self-stimulation behaviors. This was not acceptable to team members. A very wise physical therapist, one of the first professionals who worked with Laurie told me that Laurie would never learn until she exhibited resistance. This was in reference to physical development because Laurie just wouldn't try to roll over, crawl, stand up…or anything _ she would just go limp. However, I soon learned that exhibiting resistance was a prerequisite to all of her progress. At the same time, Laurie's occupational therapist also provided very wise direction. She counseled us that Laurie's family should be informed (learn as much as they could) and that it was imperative that we follow through at home with everything she was learning in therapy and at school. Then, there was the teacher who never gave up, and would never let us give up. Every member of the family was involved. This meant we couldn't just sit around and enjoy our sweet deafblind daughter. If we wanted her to realize her fullest potential, we had to be willing to "sacrifice our time and energies" to encourage her to do things she didn't want to do. She needed to wear her hearing aids. She needed to wear her glasses. She threw them off, but they were put right back on.
Some of the things Laurie most hated to do during school years have brought her the most fulfillment. The most important has been the development of communication which began with a sound motor base and evolved into the calendar system, incorporating experience stories into planned every day activities. This might include fun things, but also included work. Now, Laurie relies on her calendar to plan trips home, to visit her sister in Spicewood or her brother in Colorado, or attend Camp Summit. (She has been attending every year since it began and starts asking about it right after Christmas.) Although Laurie doesn't require the calendar as much now because she understands more sign language, upcoming activities still go on the calendar so she won't pester people so much. It may also be used to anticipate activities such as doctors visits. I must confess that I hated doing the calendar as much as Laurie did for a long time. It was disruptive to go to the calendar before we could do anything, but now I am glad we did.
Perhaps the "tuffest" thing we faced was helping Laurie grieve the loss of her dearest friend and sweetheart. Yes, a child with disabilities does go through a grieving process. Brad was a schoolmate with similar disabilities. She had been with Brad as his health declined and when he died, we had to be "tuff" to be sure Laurie understood and could deal with her sadness and go on with her life. This meant involving Laurie in the events that occurred. She was told immediately. We took her to buy flowers and to visit Brad as he lay in state. She patted him and signed his name over and over again. Laurie attended the funeral and quietly shed her tears in back of the seeing/hearing crowd. At her request she has continued to make trips to take flowers to Brad's grave and "talk" to him in sign language. Although finding it difficult, we continued to maintain consistency in our expectations while giving Laurie the time to grieve. It was a precarious balancing act, but she needed to learn that life does go on.
The airline has just announced that Laurie's plane is approaching the runway and will soon be at the gate. As I reflect how Laurie was able to arrive at this station in her life, I think of all of the people who gave so much of themselves in helping her reach this destination. Many of you would recognize the people if I had enough room to list them all. The list includes, professionals, friends, and of most importance - her family. Laurie was so fortunate to have the best. We all learned so much and without any one person in this network, Laurie would not be who she is. They should all be very proud. Perhaps you would like to know why I speak with so much pride. Well, let me tell you. We always worked as a team. The team was made up of people who, I believe, genuinely loved Laurie and believed in her. As a result, there were realistic expectations placed on Laurie that were never compromised _ discussed _ yes, adjusted _ yes, reviewed _ yes, deleted _yes, discussed _ yes, and the process repeated itself again and again. Through this process Laurie learned and progressed; found plateaus; failed and survived; then learned some more.
The plane has landed and is approaching the gate now. I think about last night when I called Betty (the supervisor of the deafblind group home at the Autistic Treatment Center in Dallas) to check to see if everything regarding this trip was on schedule. Betty told me how excited Laurie has been since we planned this visit home about three weeks ago. How wonderful it is that Laurie has become such an independent, confident woman who enjoys so many activities, so many things and her relationships with so many people. This is not to say that Laurie is "normal" - far from it! She still needs full time supervision at home and at work. ATC in Dallas has been Laurie's home for 6 years - and I have to say, these six years have been great.
The door to the passenger tunnel is open and I see Laurie hurriedly dragging her wheeled luggage toward me. We meet, have a long hug…some patting and a few signs about spaghetti or pizza for lunch. Hand in hand we leave the gate with Laurie in the lead.
As I look back over the last 30 years, I realize that many things we did fit into the category of "tuff" love. There are those who would say we were cruel and that we shouldn't have made Laurie sit on the potty chair, or forced her to eat things she didn't want, or made her do therapy at home. There are those who will say that we shouldn't have required so much of Laurie and her siblings. There are those who did not agree with the philosophy we followed in raising Laurie. In answer, permit me to relate something that was recently shared with me by those who know her so well now. I was told that Laurie is the gentlest and most compassionate person one could ever meet. Of all the things that could be said of her, this is the best. And, this can only be said of Laurie because of those who were willing to practice "tuff" love while helping us raise our Laurie.
Through the years I have worked with families of children with deafblindness, and families of children with visual impairments or other disabilities. My observations are that the most successful and happiest children are the ones that had realistic expectations placed on them by staff and family. They are the children whose families exhibited self-discipline, calmness of spirit, stubbornness, and consistency in working with their child while relying on an inner strength from the Heavens. The only word for this is "tuff" love.
Finally, consider this: Practicing "tuff" love is much tougher on the caregiver than the child. To provide consistency and expectations you must also endure consistency and expectations. You may have completed preparations to go to a friend's party, when your child decides to "do his/her own thing". If you stop to attend to your child's needs, you will be delayed or even prevented from going out altogether. You can stay and properly attend to the situation, and help your child grow or you can give in to your natural desire and go to the party anyway. However, if the latter choice occurs too often, your child may never learn.
Furthermore, never ask or expect anything of a professional that you are not willing to do yourself. Sure, they get paid. However, they can only work very hard toward a goal and do all they can with your child during the session or school day. If you are not willing to observe and follow through at home with the goals you have set for your child, he/she will likely never accomplish them.
Although there were times when the sacrifice seemed to overwhelm me, I have never regretted doing therapy activities, eating programs, dressing programs, or other programs the team established. I have never regretted doing strange things in public places or staying home when the rest of the family went to play, in order to accomplish the goals we set for Laurie. It has not always been uphill. I have not always been as diligent as I should have been. Yet, the anxiety lingers even though Laurie has been doing well for over six years. I am well aware that at any given moment I may receive that phone call - bringing me bad news - such as a reoccurrence of behavior problems, or some negative incident, etc.
In the meantime, we are truly enjoying Laurie because of the person she has become and above all, she enjoys herself…she is a product of "tuff" love.
Editor's note: If you want to learn more about Annie and Garland's early years with Laurie, check out "Power of the Heart", which can be ordered through the TSBVI Curriculum Department at (512) 206-9240 or the TSBVI website at <www.tsbvi.edu>.