The way the system works, service providers need to evaluate Bridget and record their observations in order to justify the specialized help. I have given much thought to the process of evaluation and assessment--of defining the need for assistance and, by default, pointing out all the ways a person is "broken" and needs "fixed".
I realized recently that this process will be a fixture in our lives for some time to come. I have considered (heavily) my role in supporting Bridget, and how much to push--how far to go to see results.
Our own feelings regarding interventions and therapies began to come into focus early. After being in the hospital for Bridget's first month of life, we were enjoying our days with her at home. We spent the first several months just caring for Bridget and getting to know her. That time allowed us to develop not only routines, but also strong bonds with Bridget. It provided stability for our whole family. We first met with Help Me Grow when she was two months old, but chose not to start services for several more months. I truly feel that we made the right decision.
We have a great Early Intervention (EI) team. We work together to track Bridget's progress and to determine how best to encourage and support her learning. We see Bridget’s EI team (team leader, OT, PT) once a month, and have her therapists out on an as-need basis. For us, home-based and family-centered services are best whenever possible. There are many families that include outside therapy as much as once a day, but what works best for one individual or family may not work for another.
I write monthly updates on Bridget's progress in all areas, and on what we have been doing at home each month. I also provide information on any medical appointments or tests, or any changes in status that her team should know about. They, in turn, provide me with feedback after each visit as well as support materials to accomplish goals we have set together.
I am open with all of our intervention specialists and am very active in helping Bridget move to the next stages of development, but I've asked not to be given every detail of her assessments. General areas of strength and areas needing focus are plenty of information.
Bridget was just over five months old when we had her first evaluation with her EI team. She was a "superstar", hitting all the marks for a baby in her age range (adjusted for prematurity--she was six weeks early). In the "social/emotional" category, she actually ranked above other babies her "real" age--including "typical" babies. She was alert, and aware, and strong. She was rolling over both ways, vocalizing a lot, bringing objects to her mouth, bringing her hands together, trying to imitate singing, clearly communicating her needs and wants, and lifting her head and shoulders off the floor when on her tummy. She was nursing well and getting ready to begin solid foods.
I already knew she was thriving, but the evaluation was exciting and affirmed all my own thoughts. The team clearly enjoyed Bridget, and they seemed really happy--although a little bit surprised, I think--to see how well she was doing. There was lots of smiling, and clapping, and "Yeah, Bridget!" I was gently cautioned that the evaluations are "harder" (as they include more specific tasks) as children grow. Generally, for kids with Down syndrome, the "lag" gets more obvious as time goes by.
At her nine month evaluation, Bridget did all sorts of great things. She sat independently; experimented with many different sounds (short bursts & long strings of sounds, loud & quiet sounds, squealing); she stood with help; passed toys freely from one hand to the other; and was generally animated and willing to show all of her skills. She showed only minor delays in that evaluation. She could not, however, hold a cracker and eat it herself, so she did not get a check in that box--it had to be left empty and she "lost points" for not possessing that skill.
This was a critical moment in my understanding of my role in Bridget's growth and development, and in determining how far to take interventions and therapies. How important was it that she was a "superstar"--proving everyone wrong that said she would never (fill in the blank), or would not (fill in the blank) within the "typical" time frame, or would not (fill in the blank) as well as her peers? I could have let the fact that she was unable to feed herself a cracker eat me alive. In the past, I just might have. I might have decided: Okay...we are going to do this...we are going to make sure she can eat a cracker for the next evaluation. She'll show them. We'll show them.
The truth is, I had never really given her crackers to eat herself. I tried once. She could easily hold the cracker and bring it to her mouth, but shoved the whole thing inside. She had no teeth, and little saliva, and was not really "chewing", so it just was not the right time. I lunged forward to swipe the cracker out of her mouth, and she ended up sobbing. It was not the best start to independent eating :).
The evaluation reminded me that many 9-month-old babies are feeding themselves crackers, and Bridget was not. With tons of work (and me letting go of my fear of choking), Bridget might have been able to perform this skill earlier. But when I really thought about it, I realized that it just didn't matter. Was I going to cling to every point on these evaluations? Was I going to make sure we focused on every little thing that was pointed out? Was I going to drive us all crazy with daily therapy sessions and working tirelessly on all the things Bridget could not yet do?
I knew Bridget was learning. I knew Bridget was working toward milestones. I knew she was happy, healthy and secure. Our whole family was involved in her development by playing with her, talking to her, and generally making her an important part of everything we do.
I knew right then that I had to put my (or anyone else's) motives aside and look instead for Bridget to reveal her own. We look to her for readiness "cues".
We've all learned the signs for things in our everyday life that are important to Bridget, and we've learned techniques to help her reach milestones in all areas of her development. With her, our work is play, and our play is really "work". Together, we are making lots of progress, its just that we are making it fun and following her lead...
**The ages of birth to three are truly the foundation for a person's learning. Early Intervention programs are important and necessary. For us, and with Bridget's own personality, less has been more. We make it a priority to be active learners along with Bridget, and to surround her with books as well as educational toys and experiences--and a lot of love.
**Jennifer Graf Groneberg's Perfectly Imperfect also takes a look, although much more eloquently :), at this same issue.