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Joy’s IEP

February 23, 2012

Joy enjoying the swing in the large motor room at school.

I had to get out Joy’s IEP to write this post and just having to find it in the file (meaning I don’t refer to it very often) made me appreciate again how pleased I am with Joy’s school team. I’ve heard many parents say they’ve need to fight to get their kids the services outlined on their Individualized Education Plan. Blessedly, we have not.

This is amazing because Joy’s IEP was written 10 months ago. That was 4 months before any of her teachers met Joy, and 4 months before it was scheduled to go into effect: September of 2011. This IEP was written 16 months before the next one (not yet written) goes into effect. So if our district interpreted Joy’s IEP strictly –as if it was a contract for services –it would not fit her well at all and I’d probably be frustrated.

I’m really grateful they don’t. And because they don’t (more about that later) I’m not sure how relevant the specifics are. But because I was asked to supply some, here it goes.

Joy qualifies as developmentally disabled. Her diagnosis is cerebral palsy, spastic quadriplegia type. She also qualifies as visually impaired. In our district, according to her IEP, Joy qualifies for:

  • 4 consults per year from a teacher for the physically impaired, each visit 20 min. indirect
  • 30 minutes per week of speech therapy: 10 min. indirect; 20 min. direct
  • 4 days/week Early Childhood Special Education: 10 min indirect; 150 in. direct
  • 30 minutes per week of occupational therapy: 10 min. indirect; 20 min. direct
  • 30 minutes per week of physical therapy: 10 min. indirect; 20 min. direct
  • 1 visit per month from a teacher for the visually impaired: 20 min. indirect

Joy goes to class with other special-ed. preschoolers; she is not mainstreamed. That subject deserves a post of its own because I’m philosophically on the mainstream page and several people were aghast that the district proposed a segregated classroom for Joy. Despite that, it is working out well.

Her class is very small. While I think the class capacity is six, there are only four kids enrolled and only three usually attend. With one teacher and two special-ed. paraprofessionals in the room (not to mention specialists like those listed above rotating in and out), the staff-to-student ratio is fabulous.

Most important, the staff is experienced and caring. They don’t need an IEP that dictates what to do and they don’t need Joy’s private therapists to set goals. In fact there is remarkable harmony between Joy’s private and school teams. I think this is because they are all intelligent and compassionate and are all singing off the same page: Joy.

Like you might remember Joy’s first experience riding a trike in private therapy a month ago. Then look at what Joy’s teacher emailed me last week from her new school physical therapist:

This wasn’t because I thought to tell the school team Joy had started riding a trike and it wasn’t because they follow this blog. Rather, two PTs independently arrived at the conclusion that Joy is ready to move up to the reciprocal leg pattern of peddling a trike.

To be clear, we don’t have all of our eggs in the basket marked “school.” Joy also has private PT twice a week (1 hour each), private OT twice a week (1 hour each) and private ST twice a week (45 min. each). This is not because we expected the district to offer her more services and did not. Rather, private therapy, more or less depending upon how much she could tolerate, has been part of the rhythm of her life since she was a baby and we added school to that routine.

Parents sometimes seem less impressed with an IEP when they are counting on school to provide the full level of services they believe their child needs. In that regard, we are also blessed. We have a great private insurance policy that is well suited to Joy’s needs. And we are able to buy into supplementary MA coverage that pays for full-time PCA services. Joy’s PCAs take her to most of her private therapy appointments and spend the session with her and the therapist. Thus her PCAs have become trained in therapeutic intervention, too.

Joy playing in a standing frame at school

Among her school team, her private therapists, her PCAs and us, Joy spends most of her waking hours playing with people who have a developmental agenda in mind. That’s not a bad thing. Unless she is sick, Joy enjoys all of it. And I am really beginning to see the benefits of her having to interact in order to get her needs met by different people in different settings. She loves routine and because cerebral palsy limits her access to the world, she would naturally settle into a life circumscribed by her physical abilities.

So back to role Joy’s IEP plays in her big picture. Her goals are so broad that they may seem almost generic. Things like:

  • Joy will provide 1-2 word(s) to answer when question is asked
  • Joy will express her feelings (happy, sad, mad etc.)
  • Joy will have a two-way conversation with a peer or adult
  • Joy will use her wheel chair independently to go from one location to another

However, because her school team genuinely cares about her, they use the freedom granted by broad goals to adjust and readjust their delivery system as needed to work on them.

I’m sure it helps my satisfaction level, too, that unlike when Joy first came home –when the full extent of her CP was not yet evident and we still didn’t know how much of her delays were the result of little early intervention in Korea –my husband and I now have a realistic picture of her developmental trajectory. Our expectations are realistic.  Joy is never going to “catch up” and it’s not anyone’s fault. It’s not like if her school team just tried harder, she would be ready to go to Kindergarten with her age peers this fall.

God is the only one who can heal her brain damage and he promises he will some day. But between now and heaven the best any of us can do is work with the abilities and gifts Joy has been given. More important than anything recorded on her IEP, her teachers enjoy her. Joy makes them smile. She makes them laugh. And because Joy knows they enjoy her, she is willing to work hard and to attempt new, challenging things. She is learning new things and growing and developing at school and outside it.

On her own curve to be sure. A curve that may or may not match the goals set a year ago on her IEP. But she’s made remarkable progress given that at the time her teachers and I formulated these goals, her development had regressed after surgery and six weeks in a body cast from which she was still recovering and none of us had any idea how she would do in a school setting.

So while I approached the IEP process with misgivings based on what I’d heard, my husband and I are very happy with how it is working for our family. Considering that there are maybe 13 or 14 more IEPs in her future, this is a wonderful way to begin.

P.S. If you live in MN and question whether your child’s IEP meet his needs and feel frustrated trying to make meaningful changes, PACER can refer you to a parent advocate who can help you consider your options. If your child is not yet on an IEP, PACER offers helpful classes (IRL and via webinar) that will help you understand the IEP process and use it advocate for your child.


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