Tag Archives: IEP

Vision Statement, IEP 2013

This is one in an ongoing streak of posts everyday through May to raise awareness about pediatric stroke. If you’re able, please contribute to my fundraising efforts.


This vision statement below is also something I had to write to prepare for Mia’s Individualized Education Program (IEP) meeting on Friday. I’ve been writing this kind of statement at least once a year since Mia was an infant. Before she turned three, she had Individualized Family Service Plan (IFSP) meetings and documents. Now that she’s three, she has an IEP.

Last spring, I was very anxious as we approached her first IEP meeting. When she was receiving Early Intervention services from about 1 month until 3 years, she qualified simply due to her diagnosis. They have a list of diagnoses that automatically qualify and stroke is on it. Every six months, they would adjust her services based on her developmental needs but there was never a question of her not qualifying. The Early Intervention program is pretty warm and fuzzy, at least in our experience. They made house calls to visit Mia at home or daycare, and the support is for the whole family. We didn’t need many of the supports they could have offered but I felt glad knowing that if someone needed help with transportation or interpreting what doctors were saying, they’d do all that.

The rules change once kids turn three. Services are only approved if a child’s impairment limits their ability to learn in school. I educated myself by attending a couple of workshops run by Federation for Children with Special Needs. These workshops scared me. The parents who teach these workshops have become advocates and teachers because of really awful situations where services were denied. I feared a very adversarial first IEP meeting. I took our former physical therapist with me to that meeting. The meeting was fine. The public preschool occupational therapist said Mia barely qualified. The public preschool physical therapist said she didn’t qualify. That was fine with me as I wanted Mia to have occupational therapy but not physical therapy. I requested that Mia get to work directly with the occupational therapist instead of the occupational therapist assistant. I also requested an 8 am time slot. All of my very reasonable requests were honored and we have been working with the same therapist since September. She’s told me that she plans to recommend Mia continue occupational therapy one more year so I’m not particularly nervous for Friday.

Here’s the vision statement.

Vision Statement for Students Eligible for Special Education

Parent: Mara
Student: Mia

1. My child’s strengths are:

Mia is happy, curious, motivated, has good attention, perseveres, has strong problem solving skills, and is very empathetic.

2. My child’s areas of significant interest are:

Mia loves books, climbing, jumping, running, riding her bike, doing the monkey bars, talking, singing, puzzles, arts and crafts, playing with her sister and her friends.

3. My concerns about my child’s educational progress are:

Given Mia’s medical history and limited functional use of her right arm and hand for fine motor tasks, I am concerned primarily with optimizing her dexterity for an increasing range of tasks of daily living and learning. I am concerned about both fine motor skills needed for academic tasks like coloring and writing and skills needed for independence in manipulating the objects in her daily life like clothing and food containers so she can be as independent as her peers with toileting, managing her snack and lunch, and helping in the classroom.

4. My goals for my child over the school year are:

I expect Mia to adapt to her new preschool classroom (transitioning in June) and fully participate in all classroom activities developing socially, emotionally, physically, and cognitively as appropriate for a 4 year old.

In terms of Mia’s functional use of her right hand and arm, my goal is that Mia gains control and dexterity to do increasingly complex functional tasks that require her to relax excess tone, supinate her arm, and use differentiated movements of her thumb and fingers. I believe that strength and dexterity support each other. As Mia can do more, she will gain strength, which will support her further development.

5. My vision for my child over the next three to five years is:

Over the next three to five years, I expect Mia to enter elementary school with her peers, capable of mastering the independent skills of learning and the life of the school needed to thrive in her early elementary years.

Parenting Reflections at 3 years 11 months

As part of my Streak for Mia, I am writing daily in the month of May to raise awareness and funds for pediatric stroke survivors.

In a month, Mia will turn 4. Most people who look at her wouldn’t know that she had a stroke at birth. I know this because I’ve had this conversation many times. Another parent will marvel at how fearless she is, how skillful on the playground. I will appreciate the comment and sometimes add that it’s even more remarkable given her early beginnings. Then I share that she had a stroke and most people are completely caught off guard. Really, babies can have strokes too. Mine did.

Here she is at 4 days old, having an EEG to characterize her early seizure activity. She also has a feeding tube in this picture which she needed briefly as I was working hard to reestablish breastfeeding when she was extra sleepy because of the antiseizure medications.


I see her stroke in everything she does. I see some of her quirky patterns of movement. I see all that she can do, all these newly emerging skills like her bicycling and monkey bar feats, and it all seems that much more significant because there was a time when I really didn’t know how her stroke would affect her.

I have looked with these eyes, seeing everything and doing everything to ensure the best possible learning environment for Mia. I’ve worked hard to find the right balance of approaches, some combination of Feldenkrais, occupational therapy, constraint induced movement therapy, and fun everyday life with me and Zoe at home and with friends and teachers at preschool. I’ve managed countless doctor’s appointments, navigated the IEP process, advocated for Mia with each new set of therapists and caregivers. All the while I have had an ongoing sense of not know if I am doing enough or maybe I am doing too much. Self doubt like this is hard to grapple with when life feels a lot like treading water. Being a single mom to two young girls while working full time is already more than enough to fill my days. Adding in the extra work of tending to Mia’s special needs has kept me just this side of survival mode for most of the past four years. Each year as we approach her birthday, I have a little bit of PTSD as I remember how intense it was at the beginning, the not knowing was as intense as the actual day-to-day realities.

But, here we are, approaching four years and I am starting to feel really different. I feel great joy at seeing Mia blossom in every way. I’ve been able to make enough time and space to blog here, to share some of our exciting triumphs and ongoing challenges. I have enough perspective to celebrate our accomplishments as a little family.

We have a dinnertime ritual of sharing a rose, a thorn, and a bud where the rose is something good that happened, the thorn is something challenging, and the bud is something that you’re looking forward to soon. Tonight, I shared a combination rose and bud. I told Zoe and Mia and our au pair that I am really happy because today, I got e-mail from Dr. Karen Pape whom I wrote about in my Neuroplasticity post and wrote to within the past week with some questions and observations. She replied today and wants to feature excerpts from my Monkey Mia post in her blog and direct her readers to my blog. This feels like such an honor.  Her vision is maximal recovery from early neurological injuries so each child can achieve his or her personal best. At the dinner table, we all celebrated the news, Mia for learning the monkey bars, Zoe for being her inspiration and cheering her on, Citlali for taking her to the park and sharing the joy I have in seeing these skills emerge. What a gift.

All the while, Mia feels like she can do anything. And, that’s by design. Here she is enjoying a rope swing yesterday!



Occupational Therapy – What’s it mean for infants, toddlers, and kids?


Before I had Mia, I had no idea what occupational therapy might look like for a child. I had a concept that occupational therapists help people regain the skills of daily living. But, what does that mean if you’re too young to have acquired those skills in the first place?

It turns out, at least in our experience, that the pediatric occupational therapists still focus on tasks of daily living but in a developmentally appropriate way. And, instead of focusing on regaining those skills, they focus on helping the child acquire those skills.

Mia qualified for Early Intervention services when she was just one month old. Her diagnosis (stroke) meant that she was eligible until she turned 3 and aged out of the Early Intervention program. Early on, we worked with a developmental specialist and a physical therapist. But, as Mia’s gross motor skills emerged very much on track for age, the physical therapist started to increasingly do more occupational therapy things with Mia to focus on developing functional use of her right arm and hand. Through the Early Intervention program, we switched to weekly sessions with an occupational therapist who continued to help Mia work on her grasp and release and finger dexterity in the context of play, using toys that required one hand or two. Bimanual activities and toys are particularly motivating.

All the while, I was constantly vigilant to make sense of the therapy she was receiving in the context of my own Feldenkrais training and approach to learning which is rather different from conventional approaches. More on that later in a post focused on Feldenkrais.

The Early Intervention program in our area is wonderful. The therapists made house calls or met us at Mia’s daycare. They really got to know us and when we had to switch from one to another, they took great care with the transitions.

Mia also saw an outpatient occupational therapist who specialized in constraint therapy from when she was one until she was about two-and-a-half. We saw that therapist every few months for ideas related to constraint therapy, which is yet another post. The picture that leads this post is from our first experiments with constraint therapy. I wrapped Mia’s lefty all her waking hours that week of vacation and let her spontaneously discover more of her world with righty.

Last spring, we went through a formal “Turning Three” process of graduating from Early Intervention and so now Mia receives services through the public schools. Our town has a public preschool and while Mia doesn’t go there for school, she goes once a week for a 30 minute occupational therapy session. Since September, her regular time slot has been 8-8:30 am on Friday mornings. We all go together, Zoe, Mia, myself, and our au pair in two cars so I can go to work afterwards and the au pair can take the girls to their respective schools. Zoe and I get to have some 1-on-1 time while Mia is in her session.

Just yesterday, I spoke with the therapist about what she plans to recommend for Mia as her annual IEP (Individualized Education Program) meeting is coming up in a couple weeks. Last year, I was very nervous about the first such meeting. Mia barely qualified for services because she’s so strong functionally. So, I thought the therapist might say that she would end services at the end of this school year. She honestly said she goes back and forth about what to recommend but she thinks that she plans to recommend continuing services at a half hour per week for the next year. She and I both see benefits. Mia likes going there most of the time. Once Mia enters Kindergarten, it’ll be a new set of decisions. Even if she’s deemed eligible, I’ll have to decide if it’s more worthwhile for her to stay in her classroom or be pulled out for therapy. I expect that as she gets older, sports and other activities of her choosing will take the place of these weekly OT sessions but for now, I’m glad to hear they’ll likely continue.

This post is part of my streak of posts in the month of May to spread awareness about pediatric stroke. Please consider donating to support Children’s Hemiplegia and Stroke Association, an organization that has helped our family with support and information.