Video
Transitioning to Pre-School
In this webcast, Bhavina Hirapara, a parent of a 3 year old talks about the transition from in home services to preschool services.
In this webcast, Bhavina Hirapara, a parent of a 3 year old talks about the transition from in home services to preschool services. She provides insight on the challenges of finding and accessing transition resources as well as the importance of being informed when developing the Individualized Education Program. Bhavina’s also shares her experience in determining the most appropriated educational setting for her son and the importance of collaboration and teamwork in the process.
Presented by Bhavina Hirapara
Length of time to complete: approximately 30 minutes
- Introduction
- Finding and Accessing Transition Resources
- Developing the First Individualized Education Program
- Determining the Most Appropriate Educational Setting
- Observations
HIRAPARA: I have a three-year-old; his name is Vraj Purohit and he was born premature at 33 weeks, and he wasn’t diagnosed right after his birth, but they were seeing the extra nuchal fold around his neck and they were suspecting about having Noonan Syndrome.
They did a bunch of bloodwork and everything to rule out all the emergency situations, and they diagnosed him at four months that he had 2q37 deletion — 17q duplication syndrome. It is a genetic unbalance translocation between 2 and 17. They didn’t have any more clinical information of anyone having both of the abnormalities.
There are some cases who have the 2q37 deletion syndrome, but they are a very wide range of deletion and he has a wide range of micro-based duplication too, which includes global development delay; he is more susceptible to have seizures in the future and they have to watch him every three months to check for the Wilms tumor — it’s a kidney tumor.
He’s nonverbal, non-ambulatory, and he has behavioral and sensory issues. He doesn’t babble or talk or anything yet, and he is three-years-old right now, but developmentally he is still at the 6 to 7 months range. He is hypertonic, so they don’t know if he’s every going to walk or if he’s going to do all his stuff on his own because they didn’t have any clinical information and we don’t know what his future is going to look like.
But overall, he is in good condition now.
NARRATOR: We see a video clip of Vraj in his pre-school receiving one-on-one services. A young woman holds up a display with a red circle and a yellow triangle velcroed on opposite sides, and asks Vraj to identify the circle.
TEACHER: Where’s the circle? There it is!
HIRAPARA: He actually spent his first 7 months of life in the hospital, in and out most of the time at hospitals too, and that’s how we came to know that he will have physical therapy which will help with his low muscle tone and he will have occupational therapy and everything to meet his own needs.
When we came home we started early intervention. Early intervention is a birth to three-year program, and until three-years he was getting the occupational therapy; occupational therapy is once a week; physical therapy once a week; music therapy, which he loves the most; and speech therapy and also feeding therapy. And because he had a cortical visual impairment, he was getting the vision therapy, too, and that was really helpful.
NARRATOR: To clarify, Vraj received services from a TVI, a teacher of the visually impaired.
HIRAPARA: Apart from the services from EI, he was coming to the infant/toddler group at Perkins, and there, also, he was getting the vision therapy and two-hour one-on-one services in all areas. So up to three-years, he had all the services which helped him.
CHAPTER 2: Finding and Accessing Transition Resources
HIRAPARA: The infant/toddler program was more of a parent support group, too, and that was really helpful because when we got a diagnosis for Vraj, it was very hard for me to talk about what he has and what kind of future he is holding off and everything. It is very hard to explain to people what he has and I wasn’t able to talk about his diagnosis, about how he is doing and everything to our friends, even to our family.
So after coming to the group, I met other parents whose kids have the same/similar issues, and while they were sharing their experiences and everything, I felt like I was at home, and when I was telling them something, I felt like they were understanding it.
NARRATOR: Several young children are shown participating in the Perkins infant/toddler program. Volunteers and staff hold the children and engage in a welcome song.
[Children and teachers sing ‘Old McDonald Had a Farm’]
During this time, the parents of the children have an opportunity to meet separately and share experiences.
HIRAPARA: So it was very helpful. The infant/toddler group program was not only good for Vraj, but it was supporting me as a parent. It was nurturing me as a parent — how to cope with the daily challenges that we had with Vraj and everything, and that’s how we came to know about the services around for the kids with disabilities and what resources to find, and we always talk about which doctor is good and where we can go for these therapies and everything.
So that’s how I also came to know about many resources and that also helped me and nurtured me to do the advocacy for him and everything. So it was really helpful to be a part of that group.
Initially, when we heard about the word transition when we started coming to the infant/toddler group, we had no idea what it looked like and we were just trying to see how he’s doing with the early intervention and how he just started making progress; every little progress we were counting and everything. And at that time we didn’t realize that when he’s going to turn three, he’s going to lose all this, and he has to go to a new environment; new learning approaches and everything, for the better of course.
When we came to the group, that’s how when we spoke to the parents and we attended some of the conferences, and that is the Federation for the Child with Special Needs. They do all sorts of workshops. We did attend the ‘Basic Rights’ workshop and ‘IEP for My Child’, and a transition workshop on what to do after your kid turns three. And we attended those workshops and that’s how we educated ourselves first.
We, as parents, were going to the workshops and raising our questions and asking about how the process works and trying to understand and making our minds to walk through the process and everything. We also attended — there was a Mass Families Organizing for Change, MFOFC Leadership Series.
We attended that series for three months and it was a very good experience listening to all of the parents, and there were parents who were working on a transition from age 13 to 14 and then transition from 21, because transition; so we could, based on what we heard from their experiences, we could understand and learn a lot on how it’s going to look like and how we’ll have to advocate for our child, and how this process works.
NARRATOR: We see a webpage from the Massachusetts Families Organizing for Change website.
The page contains information about the workshops offered by the group for families of individuals who are disabled, including the Family Leadership Series and a workshop titled “A Full Life Ahead”.
HIRAPARA: It was really helpful, and also at Perkins we attended the Early Connections Conference, which also helped us connect with other parents with kids who have similar vision issues, who have similar medical issues, and they cope with the school and prepare themselves for the meetings and everything.
So it’s like listening to other parents and going to all the support groups and everything, we educated ourselves first. There was one more group that, the Regional Consultation Program Northeast Group; that was very helpful listening to other parents stories. There were some parents whose kids were more than three years and they were going to school for like 1 or 2 years, and they were putting up their experiences and how they are doing at the school and everything.
Before he turned three, I think we did all the homework, I would say, before sending him to school. So as a parent, we also had to learn a lot from this entire process.
CHAPTER 3: Developing the First Individualized Education Program
HIRAPARA: We had our IEP meeting when he was 2 years 10 months old. Usually the process starts around 2 years 6 months, and then early intervention had approached our town’s public schools that he was going to turn three in September, and they come for the informal meeting at home.
The preschool director and the nurse came to our house and they talked about what services they had, and they met Vraj, and they also heard about his diagnosis and everything, and what he will need from us. And then they did the assessment and evaluations. They came to our house and for every area they did the assessment with the EI team, and then after that we had our first IEP meeting at the school in June.
It was discussing about what they figured out from the evaluations on how well they knew Vraj, and they presented to us their goals and everything. At the IEP meeting we had me and his dad — his parents, and then we had the EI team — early intervention team. We had our service coordinator from early intervention and we had our speech therapist coming with us.
They did the outside evaluations, too — the public school did the outside evaluations, so one of the therapists for hearing, auditory services; she was also in there, but she was kind of part of the school and part of the team too. They said what kind of accommodations they were going to make, so the IEP meeting was all about discussing what he’s going to get at the school.
NARRATOR: In a video clip we observe Vraj working with a TVI, a teacher of the visually impaired.
Vraj sits, supported in a wheelchair, in front of a LED light board. In order to minimize visual distractions, a hood of dark material extends from the back of the light board to the back of his chair. When prompted, Vraj is able to change the color that the lights emit by hitting a large button that the TVI presents.
HIRAPARA: The process of developing the IEP, the IEP meeting, it was all a little bit stressful, and after the IEP we felt a little bit disappointed about it. The reason behind it is I think that before the IEP, we prepared the goals that we want for Vraj; the services, frequency of services, list of services that we want for Vraj, and at the time of the IEP, I think we kept thinking of what we were expecting, instead of listening to what they were presenting for Vraj; what they were presenting for Vraj, what they were thinking would benefit Vraj.
During the IEP meeting we didn’t have to accept anything at the same time. They were proposing everything and we just had to listen to it and then we had time to respond to them about placement, about the goals, about the services that they were recommended to us.
So we actually just took whatever they were giving at that time and we just left at that time, and eventually when we came home and when we got the IEP, we discussed about the things that they had put in the IEP and then what we thought of including in the IEP.
We did a meeting again, an informal meeting again with the preschool director asking them if it was possible to change some of the goals. There were, like, a lot of differences from what our perspective was and what their perspective was, and eventually, after having all these negotiations and everything, we finally came closer and we tried to make those two ends meet.
There were some of the changes that they said, “Yes, OK, we can change that,” and some of the changes that we had to say that’s fine. If you don’t want to change it right now, whatever you have, at least if we can tweak it around a little bit, or we can think about changing it or rephrasing it after 2 to 3 months again.
We had to let it go on some things that we initially thought that we don’t want to, and there were some new things that we didn’t think of but they put it on the IEP, which was really good. They have been doing this for many years now, probably, and the educators are more aware of the steps and everything. And I think in the initial IEP, we felt like there was a language difference, also — like learning the IEP and when they were talking about the goals and everything.
As parents, it was hard for us to understand the language of the goals and the complexity of the goals, but when we asked them again and again and then we came to know that when they were explaining it to us, when they say 70% of the time or 6 out of 10 times and everything, and finally we figured out what that does actually mean for him.
NARRATOR: As Vraj works with his teacher on the exercise to recognize shapes, we see that she is keeping a record of the number of times that the shapes are presented and the number of times he selects the correct one. She can also note whether he received prompts.
HIRAPARA: We felt that that was a good approach; going step by step towards a main goal. As parents, we were writing only the main goals and we wanted to see the outcomes, and they were writing as steps.
First step is going towards this goal and the second step is going towards this goal, and then go towards the bigger goal. Eventually, after negotiation, we came to an agreement, and then there were better things that we both, as a team, wrote for Vraj.
CHAPTER 4: Determining the Most Appropriate Educational Setting
HIRAPARA: When we thought about sending him to school we were not sure about if we were going to send him to the public schools. There are collaboratives available; there are private schools available, but coming to Perkins; we attended the early learning program here and we saw what kind of services, how the classroom looks like, how the kids are doing, what kind of teacher has what kind of approaches to the kids and everything.
We also did a tour of the Deafblind program at Perkins, and because Vraj has a partial hearing and visual processing issues, we initially thought that this will benefit him more and the services and the timing and everything was very good. As we live in the town of Burlington, our second thought was that we needed to keep him in our town, in our local public schools. He will be closer to our home and we will feel more involved with him, so we thought about that too.
And in our town there were collaborative options available, too. We did visit the collaborative. We saw the classroom, we really liked the teachers and the classroom setup and everything. They were in action when we went to the tour and we felt comfortable that if our kid is going to come here, he is definitely going to make progress and everything.
At that time, the public school that we chose to send Vraj, they didn’t have a classroom setup ready yet, so we did meet with the teacher and she was very energetic and she was looking forward to it, and she had a lot of ideas in her mind at that time and she showed us on a paper of what the classroom is going to look like, and they were pretty much accommodating for Vraj’s needs and also, they were pretty much open about suggestions to hear from parents, like what we thought would be helpful for our kids in the classroom.
That’s how we ended up making up our mind that we wanted to send him to the public school because there was more involvement of us in the program itself and they were making really good accommodations for him, and they were pretty open about everything. They actually, they were pretty much flexible about it and they kept the door open for the reconsideration of the placement in case the placement doesn’t work out for Vraj.
Another thing is because we attended all those workshops and everything and we heard a lot from the parents, and we did a tour of the programs they were running, we, as parents, we knew that we should have this in his classroom. He has a vision issue; he keeps staring at the lights, and then here at the Deafblind program I saw that they put curtains over the lights that reduces the intensity of the lights, and we mentioned that to the public school and they were happy to change that and put that in his classroom.
HIRAPARA: Vraj is in a substantially separate program in an early childhood center at the Burlington Public Schools, but they have typical kids preschool program also going on within the same building, and they are having inclusive activities like they take the special needs kids with the typical kids to the park, or they sometimes visit each other’s classrooms and they do some special activities together.
That is the part actually I like most about it because when I hear from the teacher that your kid is a rock star because all the typical kids are always eager to know that oh, he has a gait trainer. Seeing him in the gait trainer they feel like he has all these gadgets and all this equipment and everything.
Initially I was very skeptical about it; about how he’s going to do with the typical kids because I’m always worried about a kid running into him or hurting him or something like that because he doesn’t know, and he’s nonverbal. If something happens he’s not going to tell. But when I hear from teachers and therapists, I feel like he’s really enjoying that particular inclusive part in the school.
When they are out in the playground, if he’s in his gait trainer, the classroom kids come and say, “Vraj, move that foot! Vraj, move that foot! Move forward!” They encourage him and it’s very good to know that he is being accepted by all the kids and I have noticed a bigger difference sending him into that setting because initially, when Vraj was — he’s being very social. He likes peoples’ faces, but only other’s faces.
If he’s in the group and he is sitting with the other kids, he won’t look at the other kids. But now I started seeing the difference. He will look at the other kids and he is more interested in the other kids. He’s looking at them and he is watching what they are doing.
He never watches us eating. When he’s sitting at the dining table with us, if we are eating he will keep looking around and he won’t make eye contact with us and he won’t look at his daddy and everything. But at the school, his teacher said one time that when they do the lunch or the snack program together, and sometimes they do it with the typical kids at the same table, he is not that interested in eating but he will look at what other kids are doing, like if another kid is picking up the spoon and putting it in his mouth, he will follow it. So that is a huge improvement with sending him to the part of inclusion and the substantially separate program.
So at the school he is getting vision therapy twice a week, speech therapy twice a week, feeding therapy twice a week, physical therapy twice a week, and occupational therapy twice a week.
NARRATOR: We see Vraj in his classroom sitting in front of a number of shiny objects or different shapes and colors that hang from a metal frame. Vraj is able to reach out and grasp any of the objects that attract his attention.
HIRAPARA: Apart from that, because of his auditory issues, he’s getting auditory therapy once a week, and as he started having all these behavioral issues like biting his thumb very hard, or the self-injury mild behavior that he is developing right now, he is getting a once a month behavioral therapy for that.
His classroom, which it wasn’t ready when we decided to send him to the school, now that it’s ready, it pretty much looked that same as we discussed and what kind of equipment we want. They did all the arrangements which is helpful for his needs and accommodated all his needs. They ordered the special chair for him to put in the classroom so that he will have a better, proper sitting position when they do all the activities and everything.
His teacher is also sending her communication notes daily, stating what activities they did, how many times and how long did he nap, how he did on the playground, and what kind of therapies he had on that day. The therapist also sends a note on how he did in therapy and if there is any unusual behavior they have noticed; they mention that.
I wanted to know how we was doing in his feeding therapy and they write down in the notes if he took the AM snack, lunch, and how many spoons he got fed by mouth and how he was behaving while they were doing it, so that is very good to know. Also, his teacher writes a blog once a week, I think I mentioned that before, about once a week, and then I get to read throughout the week what he did, what activities he did, how he behaved, and I get to see pictures of what he did during the week, so it is very good to know.
The classroom also has; there are three kids right now so they have a different section for them. They have floor time to get up and stand on the floor independently and all that. They have a little room for his vision stimulation and everything. They have equipment needed for their exercise, like a stander; we send our own gait trainer. He has a light aid and everything, and they use the iPad with them in the classroom.
His teacher is pretty good about putting the schedules on tactile objects and showing them exploring their sight towards that. So it is pretty much accommodating all his needs right now in his classroom, and I think he loves to be in the classroom.
NARRATOR: Having been giving a choice of activities, Vraj has selected reading. The book that is being read to him is about turtles who decide to have a race. As part of the activity, Vraj is asked to remove small plastic turtle figures that have been velcroed to a Veltex board.
HIRAPARA: It’s very good to know that when I say something to his teacher that he’s doing this kind of behavior at home. Did you ever notice him doing it in the classroom? And his teacher says no, he doesn’t do it. He’s very well-behaved here. What I read from the blogs and what I see from the pictures on the blog, I also feel like he is a very well-behaved kid in the classroom.
I think he knows the difference of ‘I’m with my mom’ and ‘I’m with my teacher’, so that is a huge thing. That is a huge part of development; that he started learning his schedule and started learning different peer interaction and everything. Initially it was very hard to send him to school, but now when I think of it, I feel like that is his space, and that is my space. I have to let him go a little bit for his better.
He gets all the therapies and he gets to play with other kids. He gets to learn the smallest things in a different way from the teacher and I really appreciate it now. At that time, I wasn’t. At that time I was really feeling sad about it that I had to send him home. I think that I was more worried about that he’s nonverbal, he’s not going to tell me anything when he comes back. As a parent, I want to know what he did, how his day went, what happened to him at the school, if everything went on time, if his nurses did his feedings on time. All those things.
So initially it was very, very hard. I was waiting for him to come back home and reading all his notes and I was picking up the phone and calling the school, even though I had notes in my hand, confirming that he did this; how did his day look like? In a week, I kept calling them and I was also going to school, initially, just to check on him, but I think it was more hard on me than on him.
I felt like I don’t know how he’s going to react going to a new environment and everything, but he had to start pretty fast, faster than me. His dad was pretty much practical about it and because he goes to the office, he doesn’t stay with him all day. It wasn’t that hard for him, but it was very hard for me. Today I feel like it was a really good decision to send him to school for his program, and he is making progress at his own rate. He likes the classroom. He likes to be in the classroom, and when I read in the notes that he’s was rock star today, it makes me feel good.
