1,901 words
15 minute read
I've been thinking about various IEPs, school projects and journal entries, and how they all reflect this insistence that I learn to walk with one crutch (and, eventually, with no crutches.)
I had always thought this stemmed from seeing an older student on my bus in 6th grade who had a surgery and started out in a wheelchair. As he recovered, he was able to walk independently. His gait, looking back, seemed very much like CP-gait.
All this time, I've thought the desire to walk with one crutch (and eventually, not need them altogether) was based on an 11 year old's naivete and not really understanding CP and how it's different for everyone. But it seems that there were ridiculously unrealistic IEP goals written down for me. Many of them are patently unfair, but in particular? The following, around crutch-use...
Related: How to Include Kids In Their Own IEP
GOAL #1: Improve efficiency with crutch use.
SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will cruise hallway while other students are present with no more than one episode of stopping on 3 consecutive therapy days.
PROGRESS MADE TOWARD THIS GOAL: Attained. Tonia still tends to hesitate occasionally, but with verbal cues, does tend to continue.
TONIA'S PRESENT DAY NOTES: Why one of my goals was to walk in a crowded hall with the mobility aid I was least comfortable with, I will never know. My stopping frequently was due to knowing that if I did not get out of the way / stop, kids WOULD knock me over. Also, a depth perception issue. I could not gauge how far away from me kids actually were, so I stopped preemptively to ensure my own safety.
GOAL #2: Improve balance.
SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will align both crutch tips and her feet in a straight line on the floor in less than 15 seconds and maintain position for 30 seconds on 3 consecutive therapy days.
PROGRESS MADE TOWARD THIS GOAL: Unable to do at this time. Tonia appears to be afraid and does not trust herself to balance over her legs.
TONIA'S PRESENT DAY NOTES: This is not a trust issue. It's an issue of an unrealistic goal being presented for a child. It's an issue of someone with CP's body working differently than a nondisabled person's. I have never and will never be able to achieve a goal like this. Not without falling over and smashing my face or my head. No wonder I was afraid!
SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will descend 5 steps with use of both crutches in less than one minute on 3 consecutive step data days.
PROGRESS MADE TOWARD THIS GOAL: Tonia is able to descend the steps in less than 1 minute occasionally. It is dependent on her determination for the day. Will continue until consistent.
TONIA'S PRESENT DAY NOTES: Again, way to blame the child for the reality that CP symptoms fluctuate depending on the weather, exhaustion, nerves, and any number of things. If it was all based on determination, I would have achieved every goal the minute they were presented to me. I tried so hard all the time. It wasn't my fault.
GOAL: Tonia will improve her functional independence with crutch use.
SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will walk with 2 crutches from her class to the office and back to her room in less than 8 minutes on 3 consecutive therapy days.
PROGRESS MADE TOWARD THIS GOAL: Not met due to recent surgery. Did task with walk[er] in 3 mins 40 secs.
TONIA'S PRESENT DAY NOTES: Why was it necessary for me to become a speed-walker? I have never been able to walk anywhere in 8 minutes. I can barely manage my apartment hallway in 8 minutes. Also? Who was in charge of these goals and was the surgery super sudden? Why set such ridiculous goals if you know I'll be out of commission for months afterward?
SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will walk 50' with use of 1 crutch in less than 2 minutes on 3 consecutive therapy days.
PROGRESS MADE TOWARD THIS GOAL: Unable to walk with one crutch as of yet after surgery this year.
TONIA'S PRESENT DAY NOTES: And, there it is. The evidence that even this early on? Nondisabled adults in my world were pushing me toward this totally arbitrary goal. Also, I don't know how to interpret the notation by the number 50 but it frightens me either way. (50 feet? 50 steps?) It's a lot. And again, it's completely unecessary pre-surgery and unrealistic post-surgery.
The learner's IEP:
[ X ] Meets learner's current needs and will be continued without changes.
TONIA'S PRESENT DAY NOTES: Like...I have zero words for this. Read the following and you'll see what repercussions continuing crappy goals like this had on me. I can't even. Meets my needs? Will be continued without changes? This is just cruel.
I don't have a happiest day. I've had LOTS of good and fun ones but never a best one. Here are some examples of good and fun days. The first time I got to hold my baby cousin, the first time I tied my shoe, I really don't have a happiest day. My HAPPIEST day will be in the future when I walk with NO crutches. My one dream is to become an Olympian [Olympic gymnast] maybe Special Olympics first but my one wish is to become an Olympian.
TONIA'S PRESENT DAY NOTES: It struck me, finding this again, a couple years ago, how stark it is that at 10 years old, I could not name a happiest day ever. I could name wishes. Dreams. But my happiest day is based on nondisabled adults pushing me to do what I physically could not.
Hi, If I had the choice of being the best LOOKING kid the most ATHLETIC kid or the SMARTEST kid in 6th grade do you know which one I'd pick? I'd like to be the most athletic. This is because since I was about 9 I've wanted to be in gymnastics lets see, uh, a Nickelodeon show like GUTS and eventually be in an Olympic event. This may sound a little strange but I don't particularly enjoy stretching out or doing exercises (unless there's music on without it it's totally BORING!)
I had always thought this stemmed from seeing an older student on my bus in 6th grade who had a surgery and started out in a wheelchair. As he recovered, he was able to walk independently. His gait, looking back, seemed very much like CP-gait.
All this time, I've thought the desire to walk with one crutch (and eventually, not need them altogether) was based on an 11 year old's naivete and not really understanding CP and how it's different for everyone. But it seems that there were ridiculously unrealistic IEP goals written down for me. Many of them are patently unfair, but in particular? The following, around crutch-use...
Related: How to Include Kids In Their Own IEP
***
GOAL #1: Improve efficiency with crutch use.
SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will cruise hallway while other students are present with no more than one episode of stopping on 3 consecutive therapy days.
PROGRESS MADE TOWARD THIS GOAL: Attained. Tonia still tends to hesitate occasionally, but with verbal cues, does tend to continue.
TONIA'S PRESENT DAY NOTES: Why one of my goals was to walk in a crowded hall with the mobility aid I was least comfortable with, I will never know. My stopping frequently was due to knowing that if I did not get out of the way / stop, kids WOULD knock me over. Also, a depth perception issue. I could not gauge how far away from me kids actually were, so I stopped preemptively to ensure my own safety.
***
SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will align both crutch tips and her feet in a straight line on the floor in less than 15 seconds and maintain position for 30 seconds on 3 consecutive therapy days.
PROGRESS MADE TOWARD THIS GOAL: Unable to do at this time. Tonia appears to be afraid and does not trust herself to balance over her legs.
TONIA'S PRESENT DAY NOTES: This is not a trust issue. It's an issue of an unrealistic goal being presented for a child. It's an issue of someone with CP's body working differently than a nondisabled person's. I have never and will never be able to achieve a goal like this. Not without falling over and smashing my face or my head. No wonder I was afraid!
***
SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will descend 5 steps with use of both crutches in less than one minute on 3 consecutive step data days.
PROGRESS MADE TOWARD THIS GOAL: Tonia is able to descend the steps in less than 1 minute occasionally. It is dependent on her determination for the day. Will continue until consistent.
TONIA'S PRESENT DAY NOTES: Again, way to blame the child for the reality that CP symptoms fluctuate depending on the weather, exhaustion, nerves, and any number of things. If it was all based on determination, I would have achieved every goal the minute they were presented to me. I tried so hard all the time. It wasn't my fault.
- IEP excerpt reviewed March 13, 1991. 9 years old.
***
 |
| [Image: Tonia, 9 years old, precisely at the time these goals are being drawn up. This is who was being discussed. This is the child I was.] |
***
GOAL: Tonia will improve her functional independence with crutch use.
SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will walk with 2 crutches from her class to the office and back to her room in less than 8 minutes on 3 consecutive therapy days.
PROGRESS MADE TOWARD THIS GOAL: Not met due to recent surgery. Did task with walk[er] in 3 mins 40 secs.
TONIA'S PRESENT DAY NOTES: Why was it necessary for me to become a speed-walker? I have never been able to walk anywhere in 8 minutes. I can barely manage my apartment hallway in 8 minutes. Also? Who was in charge of these goals and was the surgery super sudden? Why set such ridiculous goals if you know I'll be out of commission for months afterward?
***
SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will walk 50' with use of 1 crutch in less than 2 minutes on 3 consecutive therapy days.
PROGRESS MADE TOWARD THIS GOAL: Unable to walk with one crutch as of yet after surgery this year.
TONIA'S PRESENT DAY NOTES: And, there it is. The evidence that even this early on? Nondisabled adults in my world were pushing me toward this totally arbitrary goal. Also, I don't know how to interpret the notation by the number 50 but it frightens me either way. (50 feet? 50 steps?) It's a lot. And again, it's completely unecessary pre-surgery and unrealistic post-surgery.
The learner's IEP:
[ X ] Meets learner's current needs and will be continued without changes.
TONIA'S PRESENT DAY NOTES: Like...I have zero words for this. Read the following and you'll see what repercussions continuing crappy goals like this had on me. I can't even. Meets my needs? Will be continued without changes? This is just cruel.
- IEP excerpt reviewed May, 1992. Four months post major surgery. 10 years old
***
My Happiest Day Ever
I don't have a happiest day. I've had LOTS of good and fun ones but never a best one. Here are some examples of good and fun days. The first time I got to hold my baby cousin, the first time I tied my shoe, I really don't have a happiest day. My HAPPIEST day will be in the future when I walk with NO crutches. My one dream is to become an Olympian [Olympic gymnast] maybe Special Olympics first but my one wish is to become an Olympian.
TONIA'S PRESENT DAY NOTES: It struck me, finding this again, a couple years ago, how stark it is that at 10 years old, I could not name a happiest day ever. I could name wishes. Dreams. But my happiest day is based on nondisabled adults pushing me to do what I physically could not.
- 5th grade autobiography, age 10, Spring,1992.
***
Hi, If I had the choice of being the best LOOKING kid the most ATHLETIC kid or the SMARTEST kid in 6th grade do you know which one I'd pick? I'd like to be the most athletic. This is because since I was about 9 I've wanted to be in gymnastics lets see, uh, a Nickelodeon show like GUTS and eventually be in an Olympic event. This may sound a little strange but I don't particularly enjoy stretching out or doing exercises (unless there's music on without it it's totally BORING!)
Related: 2020 Summer Blog Post Series: CP and Therapy
TONIA'S PRESENT DAY NOTES: Even here, there's reference to stretching and doing exercises. No mentioning that, in total, our exercise regimen took about an hour, post surgery. I was often made to start over, when it was decided I was not trying hard enough, or doing the exercises right.
TONIA'S PRESENT DAY NOTES: Even here, there's reference to stretching and doing exercises. No mentioning that, in total, our exercise regimen took about an hour, post surgery. I was often made to start over, when it was decided I was not trying hard enough, or doing the exercises right.
While we were assisted with PT early on by therapists and parents? By this time [3 months after a second hip surgery], it was our responsibility to do them, by ourselves. Strength-building, stretching, biking. All of it.
Me saying I didn't 'particularly enjoy' stretching / exercising was the safest way I could think of to convey just how deeply I hated it.
I'd better describe myself! Just in case I change in the next 20 years. I have shoulder-length brown hair, blue-green eyes, and I'm 12 and a half years old. My birthday is June 21. I'm almost 5 ft tall. I use crutches, which I'm hoping to get rid [of] in about a year or two...
TONIA'S PRESENT DAY NOTES: This surprised me when I found it years later! I could not believe that even here, I persisted in the belief that I could overcome CP, if only I worked hard enough. But how could I believe anything else, when all the adults everywhere were telling me the same?
It's the weekend. I'm twelve. Maybe thirteen.
Lunch time means, just eat your food. Then vacate.
I'm doing that, when all of a sudden, it doesn't matter how much I try to keep a low profile. I am noticed anyway. And not in a good way.
"Tonia," the voice is impatient.
I glance up, fearful.
"Have you been practicing walking with one crutch?!"
What?
(My mind is reeling. Racing. Trying to catch up to wherever this is going. It's brought up like this is something we discuss on a regular basis. It isn't. Like it's something I'm expected to have done. I remember practicing from time to time over the past few years. Getting pretty good at walking with just one, as long as it's the left.)
But it has not been a topic of conversation.
My mind races with the best way to handle this. Obviously, I'm being noticed now, because of something unacceptable about my gait. Something despised. It'll make it worse if I lie and say I have.
"No, but I will," I promise.
"No, but I will," the voice scoffs, mocking me.
(Lunch is over by now, and the rest of my sibs are hurrying to clean up.)
"Just leave it! Go downstairs! Tonia! Stay here!"
I am beyond freaked out.
(What's going to happen to me? What did I do? Obviously, I didn't practice enough...but I didn't even know I was supposed to be practicing.)
"Now, you're gonna practice! One crutch, dumbass! Leave that one there! Walk! Out to the kitchen and back!"
I do, but fear is making my spasticity kick in hardcore. It's harder to move. Harder to do everything. But I know I have to keep going.
After a lap or two, (enduring this voice screaming abuse at me the whole time) the decision is made to make things even harder. This person stalks out to the kitchen and gets an empty Tupperware container. Gives it to me to hold in my right hand (also CP-impacted).
Holding onto the Tupperware is almost more than I can do simultaneously.
"Stand up straight! This is what happens when you don't stretch!" the voice snaps.
I make it back to the living room carpet in time to hit my knees. I'm pulled to my feet by my hair: "Stand the fuck up!"
I try, but it's useless. I'm shaking. My body won't work that way. Not on demand. Not ever.
"Get downstairs! Fucking idiot..."
I'm crying, but trying not to.
I'm just glad to be away.
Soon after, as 8th grade progresses, I am talked to about using my wheelchair at school part-time, in preparation for using it full time in high school. After years of trying to overcome my CP, the surgeries, the nonstop abuse? The wheelchair feels like giving up.
My heart breaks at being held to such unattainable standards by nondisabled people. At being abused for what my body simply could not do under stress.
Today, I can't help but feel that I was set up to fail.
I can't help but feel that those unrealistic IEP goals helped justify unsafe treatment and abuse by adults in my world.
- 6th grade, age 11, January, 1993
***
I'd better describe myself! Just in case I change in the next 20 years. I have shoulder-length brown hair, blue-green eyes, and I'm 12 and a half years old. My birthday is June 21. I'm almost 5 ft tall. I use crutches, which I'm hoping to get rid [of] in about a year or two...
TONIA'S PRESENT DAY NOTES: This surprised me when I found it years later! I could not believe that even here, I persisted in the belief that I could overcome CP, if only I worked hard enough. But how could I believe anything else, when all the adults everywhere were telling me the same?
- 7th grade, age 12, December, 1993.
***
TW: Physical, emotional, verbal assault of a child, ableism.
It's the weekend. I'm twelve. Maybe thirteen.
Lunch time means, just eat your food. Then vacate.
I'm doing that, when all of a sudden, it doesn't matter how much I try to keep a low profile. I am noticed anyway. And not in a good way.
"Tonia," the voice is impatient.
I glance up, fearful.
"Have you been practicing walking with one crutch?!"
What?
(My mind is reeling. Racing. Trying to catch up to wherever this is going. It's brought up like this is something we discuss on a regular basis. It isn't. Like it's something I'm expected to have done. I remember practicing from time to time over the past few years. Getting pretty good at walking with just one, as long as it's the left.)
But it has not been a topic of conversation.
My mind races with the best way to handle this. Obviously, I'm being noticed now, because of something unacceptable about my gait. Something despised. It'll make it worse if I lie and say I have.
"No, but I will," I promise.
"No, but I will," the voice scoffs, mocking me.
(Lunch is over by now, and the rest of my sibs are hurrying to clean up.)
"Just leave it! Go downstairs! Tonia! Stay here!"
I am beyond freaked out.
(What's going to happen to me? What did I do? Obviously, I didn't practice enough...but I didn't even know I was supposed to be practicing.)
"Now, you're gonna practice! One crutch, dumbass! Leave that one there! Walk! Out to the kitchen and back!"
I do, but fear is making my spasticity kick in hardcore. It's harder to move. Harder to do everything. But I know I have to keep going.
After a lap or two, (enduring this voice screaming abuse at me the whole time) the decision is made to make things even harder. This person stalks out to the kitchen and gets an empty Tupperware container. Gives it to me to hold in my right hand (also CP-impacted).
Holding onto the Tupperware is almost more than I can do simultaneously.
"Stand up straight! This is what happens when you don't stretch!" the voice snaps.
I make it back to the living room carpet in time to hit my knees. I'm pulled to my feet by my hair: "Stand the fuck up!"
I try, but it's useless. I'm shaking. My body won't work that way. Not on demand. Not ever.
"Get downstairs! Fucking idiot..."
I'm crying, but trying not to.
I'm just glad to be away.
***
Soon after, as 8th grade progresses, I am talked to about using my wheelchair at school part-time, in preparation for using it full time in high school. After years of trying to overcome my CP, the surgeries, the nonstop abuse? The wheelchair feels like giving up.
My heart breaks at being held to such unattainable standards by nondisabled people. At being abused for what my body simply could not do under stress.
Today, I can't help but feel that I was set up to fail.
I can't help but feel that those unrealistic IEP goals helped justify unsafe treatment and abuse by adults in my world.
***
Tonia,
ReplyDeleteI’m glad that I am not the only one who has had unrealistic goals imposed on them by their IEP team. For me, it was my team’s insistence that I not use a power wheelchair in school because walking would build my endurance, as well as their insistence that the moro reflex was simply a bad habit that could be unlearned. Thank you so much for writing as always!
I bet your IEP team (like mine) was made up of all nondisabled people. That sounds like some abled rationale. It makes sense for them, but not for us, at all.
DeleteYou’re right that my IEP team was made of all nondisabled people. In fact, I always longed to have someone on my support team who had cerebral palsy themselves.
DeleteI know, right? Tara's said for a long time how it should be a thing to have an adult who shares a child's main diagnosis present at the child's IEP meetings as an advocate for the child.
DeleteI agree with her 100%. I think it would be very beneficial for a child and the rest of his or her IEP team.
Delete