In this webcast, Lacey Smith a parent of a three year old girl with CVI talks about the challenges she experiences in transitioning her daughter from early childhood services to preschool. Smith talks about important topics such as developing the first Individualized Educational Program and finding the most appropriate placement and provides advice to parents in this regard.
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Presented by Lacey Smith
Length of time to complete: approximately 30 minutes
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CHAPTER 1: Introduction
NARRATOR: Introduction by Dorinda Rife, executive director of National Education Programs at Perkins School for the Blind.
RIFE: Everything is a transition, moving from infant/toddler services in the home to being in a preschool with other children.
Stepping on a school bus for the first time is a transition into the next step. Moving from middle school to high school, which is often a pretty scary time for parents to think about their children moving on to, that’s a transition that we’re preparing for very early on by teaching kids good mobility skills, good daily living skills, good social skills.
It never ends. It begins at the beginning, and it’s a process that we never end.
SMITH: My daughter Savannah, she’s three and a half. When she was born, she developed hydrocephalus shortly after her birth. When Savannah was around three months, we started with a social worker that came out, and they evaluated her and she started kind of carrying over all therapies.
We soon got a PT to start helping with physical therapy and, you know, trying to help her progress.
Through therapy, she started rolling early, so we were thinking that everything was going to be fine, but we noticed that she wouldn’t track anything. She wouldn’t use her hands to grasp, and she still doesn’t use her hands, but now she’s able to track a little bit — light objects especially, some colored objects.
NARRATOR: Savannah is lying on a blanket on the floor at home. Lacey presents her daughter with a musical toy that lights up and places it on the floor within reach. She encourages Savannah to touch the toy.
SMITH: Get it! (toy playing music)
NARRATOR: And it begins to play music and light up. (music playing)
SMITH: But initially, we brought her in because she wouldn’t make that eye-to-eye contact with us, and she would look like she was looking at things, like her mirror above and her swing, and you know, she liked the lights, we always called them her friends. (laughs). Before we really knew that she had a real visual impairment.
And then at eight months, when she was diagnosed with cortical visual impairment, we were registered with the Mass. Commission for the Blind, and she was provided a TVI, a teacher of the visually impaired.
NARRATOR: Cortical visual impairment, CVI, is a neurological visual disorder caused by the disturbance of the posterior visual pathways and/or the occipital lobes of the brain.
CHAPTER 2: Early Intervention – Starting the Services Continuum
SMITH: I do feel that early intervention, you know, helped shaped us into finding the right resources and things that Savannah needed. However, I do also remember a time where I was advocating for occupational therapy because I knew this is something she needed. And so from then, you know, finally we also got an OT, but you know, you really have to advocate from a medical and educational standpoint from the get-go with a child with special needs.
I’ve stayed on top of our social worker to get her the OT that she needed, and you know, medically, I’ve learned a lot since she was born that everybody’s opinions are different and we really have to use our best judgment as her parents and what we feel is right for her.
So we had Mary Sparks, was our TVI who came from Perkins, and she brought us all kinds of wonderful visual tools. She pushed early on for Savannah and I to start attending an infant/toddler program where the children are in a room with a one-on-one and where the parents go and meet and talk about their life complexities, I guess. And so for a while, I didn’t agree to do it because we were busy and we had, you know, five therapies or therapists, plus doctors’ appointments still. And it just seemed too much for me. September of the year before she turned three — so we had about ten full months — we decided to give it a go, and once I went, I never wanted to stop going.
NARRATOR: We see a video clip of a group of toddlers and infants gathered at Perkins, most of them sitting in the laps of aides. The children are either blind, visually impaired, or multiply disabled, and they are able to interact and participate to varying degrees as a welcome song is sung.
MUSIC:♪ Swish, swish, swish, swish, swish, swish… ♪
SMITH: And I wish it’s a service that we still received today, just meeting with other parents of children with visual impairments. It helped me talk about my feelings and it also was the first part of letting go of Savannah, even though she was in the room next door. I never really have left her. I still really don’t other than the school, so letting go has been a huge transition in itself for us.
When we came here, Savannah had one-on-one time with an aide, and there was an aide per child. She was put in the category of visually impaired and disabled, so there weren’t children trampling all over her or anything, but they did activities together. You know, it started to open my eyes to different things I could do with Savannah. Music therapy was huge for her. She loves music, so it was really great to see, and that was something, again, I started advocating for at school.
NARRATOR: We now see a group of children, including Savannah, in a preschool classroom. They are gathered around in a circle. Savannah is one of two children in a wheelchair, and she has a flat desktop surface attached to her chair. The teacher holds a plastic figure of a snowman, and the group begins to sing “Frosty the Snowman.”
MUSIC:♪ Frosty the snowman was a jolly, happy… ♪
SMITH: She goes to a school where music therapy exists because it’s so good and healthy for her brain. I do think emotionally that it was good for us to have that experience, because it definitely helped me realize that in another classroom, she’ll be okay. You know, “She’ll be okay” is something I keep learning.
CHAPTER 3: Forming the First IEP: Individualized Education Program
SMITH: If I was going to give advice to parents who are in the transition process, I would suggest trying to get their whole IEP team involved. Ours was. We had 19 people at our IEP meeting. And I would also encourage them to fight for everything they feel is necessary for their child. We were given two times 30 minutes of every therapy initially, maybe three times for a couple, but I fought for Savannah to get three times of everything because she really needs it.
So I would say to parents who are in the transition process to look at multiple schools and really go with what your heart says in the end, because you can always change your mind later if it’s not the right place. So when we started our IEP meeting, we had. Savannah’s dad and I were both there, Savannah, because we still weren’t ready to leave her with anyone, we had her physical therapist, her occupational therapist, her vision therapist.
NARRATOR: To clarify, it was a TVI, a teacher of the visually impaired, who attended the IEP meeting as part of Savannah’s team.
SMITH: her speech therapist, her social worker, we had somebody representing her from the Mass. Commission for the Blind, and also we had a nurse representing her health care needs. I felt that they contributed greatly because they actually, they’ve worked with Savannah for so long, outside of the nurse and the lady from the Mass. Commission for the Blind, that they know what she needs because they’ve been working on the same things that we have. I mean, they were our first teachers, so they were amazing to be there and support us in what we needed for Savannah.
So when she was evaluated by the schools, because that’s part of the process, you know, they see her for 30 minutes and evaluate her.
You know, I remember specifically arguing with the OT about her defensiveness to tactile objects, where Savannah really is not defensive, and she might have just been having a bad day for her to get that reading.
NARRATOR: In the classroom, Savannah is presented with a toy turtle that has various raised panels on its shell. The panels light up and play sounds when pushed. Savannah appears to be enjoying the activity.
SMITH: When her IEP came back to us and she had all these goals that had already been achieved, I sat down with her therapist and went over these goals and came up with new ones, and basically we, at our next meeting, went over all these goals and told them, “She’s accomplished this, we need to set a new goal,” and we agreed to set goals that we felt were true, like, a true measure for her.
CHAPTER 4: Finding the Most Appropriate School Setting
SMITH: As far as transitioning went for Savannah, we felt we had to put her in preschool. We didn’t feel like we had really much of a choice, or we might be taking something away from her because when they turn three, their services end, so it would be all outpatient, and that’s not what we really wanted for her. So when we started searching for preschools for Savannah, we first looked at our community school and we found that the environment was not the way we had set up. Even though it was the biggest, most appealing room as far as the size, the lights were a distraction and the teachers were not trained to work with visually impaired children, and even though she would have a TVI come in and help give her vision therapy, it’s something that needs to be carried out throughout her day at school.
NARRATOR: In a video clip, we see Savannah in her preschool classroom. An aide leans towards her and tells her that circle time is over and it is now time for lunch.
AIDE: It’s time to eat.
NARRATOR: The aide displays a large illustration that describes the motion to sign “Finished” or “Done.”
SMITH: And that school district was still pushing that they felt that they could have an appropriate place for her, but we pushed back, and that’s where I really learned to advocate for Savannah and what she needed. The right type of school environment for her was going to probably change her for who she is in the long run. We wanted Savannah to have the typical peer interaction that most toddlers get because she doesn’t have siblings and, you know, it’s a normal part of life and it always will be to have people around and get used to different sounds, and hopefully the kids can help her.
NARRATOR: Savannah and two of her classmates are sharing an iPad that displays brightly colored simple animations, such as a pink Ferris wheel and then a yellow dog.
SMITH: When we went in initially to interview in the school, we watched snack time, and all the little typical kids were helping their disabled peers put the trash in the trash can, so it was really good to see the interaction between both disabled and abled children.
CHAPTER 5: Emotional Issues Around Transition
SMITH: When we submitted Savannah’s paperwork and had our first initial meeting with the school, my anxiety really set in that we were no longer going to be receiving services in our home and that we needed to put her in school, which was extremely hard for me because, um, she’s been my sidekick. Hmm… So letting go of her was really tough for me.
NARRATOR: Back home, Lacey and Savannah sit on the floor together, Savannah between Lacey’s legs. In front of them is a pink toy piano, and Savannah reaches out to play the keys.
SMITH: It’s still kind of tough because, you know, as I said, I send her to school and I’ll get minimal notes of how the day went, but not exactly how she’s doing. And not being a part of her therapies all the time is tricky for us because we’re not learning as much as we did in the past three years. So her school’s very open to us sitting in.
When we started Savannah in school — she actually started in June, when everything was situated — and she started out three days a week, and I still got to keep her at home for two, and once the school year started in September, we started her four days a week, and this month, we’re starting her five. So as hard as it was for me to put her in school on transition, she’s doing good. It’s a nice break, you know, from the everyday care, and she’s thriving, she’s with peers, she’s happy.
When I drop her off, she seems to know she’s at school and she smiles, and whether it’s because we’re at school or because she’s getting out of the car and she’s excited, she’s really… it’s really better for us now. I don’t really like to send her five days, but we also want her to have therapy, and I know therapy is her way of learning.
NARRATOR: In a video clip taken in Savannah’s preschool classroom, we see the children gathered around a light table, playing with various toys and objects. Savannah’s wheelchair is at one end of the table, and she is playing with the snowman, which lights up from the inside.
SMITH: With Savannah’s cortical visual impairment, it’s tricky. It’s a vision impairment that, you know, some days she’s going to be more on and some days she’s going to be more off, and just trying to help her. (laughs). Trying to help her progress and use tactile objects to make things easier for her to understand what she’s doing from each activity to the next. You know, part of when we first had her first week of school, something that made it easier for me was that I went in for the first three days, and I stayed and watched what they did and sat through the groups, and I tried to step back by the third day a little bit and let them take over, but letting her know that I was going to be there or I would be there to pick her up was really important.
And her teacher on her first day by herself sent me some pictures, like, “Savannah’s doing really well,” so it was great. I wish all teachers would do that all the time. When Savannah’s at school, it’s tough because we went from having early intervention in our home to having all control of all of our therapies, to watch every therapy and see how to teach her, and now that she’s in school, we’re kind of clueless of what’s going on and how much she’s doing.
So we try to go in and sit in and watch some of the therapies, and we’ve seen some strengths, like she’s bearing weight through her arms a little bit now, where she never was. And, you know, she’s doing really well in an inclusive environment, which we were, you know, this was kind of, “Well, let’s try her here, and if she doesn’t work there, we can put her in the less inclusive environment room.”
CHAPTER 6: Looking Back and Planning Ahead
SMITH: Some of the resources that we found that were helpful — brought to our attention by our infant/toddler program at Perkins and the early intervention we received in the home — were workshops that are put on by the Mass. Federation for Children with Special Needs. And one of those workshops that I attended was the Turning Three workshop, which gave a lot of helpful advice.
It definitely, there were things that I would have, you know, liked to learn more. There’s resources such as the Federation for Children with Special Needs that we can still use, and the Mass. Commission for the Blind has always been a great resource for us as well. Her not being able to verbalize has been. You know, most three-year-olds can communicate what’s going on to some degree at school, but I really have no idea unless they tell me, so it’s definitely, it was definitely really good to have the early infant/toddler program here at Perkins.
The good thing about the program and meeting friends with visually impaired kids is we don’t live in the same town, so all our children are going to end up in different schools more than likely, and as they get older, we’re going to probably maybe reconnect in the same school setting or, you know, we’ll learn from each other what they like about their school and, you know, how to kind of move forward in this whole transition process.
NARRATOR: In a video clip, we see Savannah at home. With support straps around her legs and chest, Savannah is able to stand in front of a rack from which hangs several brightly colored and shiny objects, such as strings of beads and a yellow plastic toy. She is able to reach out and touch the objects.
SMITH: The next transition I think will be tricky in itself, because she will likely not be mainstreamed at that point because of her needs in the classroom aren’t going to be found in a typical setting, and she’s going to need more. So when we start that transition process, it’s going to be, again, going for where we think she’s going to be best placed and learn and grow, to try to give her some independent skills.
NARRATOR: Additional resources are available on the Perkins eLearning website at perkinselearning.org. These resources include an online class — IEPs and Incorporating the Common Core Standards for Students who are Blind or Visually Impaired. Three webcasts — Crafting the Best IEP for Your Child Who is Blind or Visually Impaired, Advocating For Your Child’s Needs, and Transition for All Ages.
In addition, a publication, Educational Service Guidelines: Developing an Effective IEP is available as well. Special thanks to Tom Miller and Sandra Busa of the Northshore Education Consortium in Beverly, Massachusetts, and to Lacey Smith.