In the month since my last post, we finished up summer testing. My son's interest level took a nose dive after he was off a week and a half for vacation, and understandably so. The good news is that the summer testing revealed that he is on or above grade level in every skill area in Reading and Math. Wow. Let me say that again. Wow. Just five months ago, we sat at a meeting with a teacher who indicated that for him to be on grade level, it would take an act of God. "We could all just pray," she said. Because of her assessment, he spent the last five months of first grade on intervention-level curriculum, and we saw his grades get worse and worse. His interest in school plummeted. Fast forward to July. At this week's IEP meeting, his summer teacher assessed him as brilliant but unmotivated when the work is too easy, and she stressed that challenging him intellectually is crucial. Wow.
The summer teacher's assessment seems to have been a game-changer for our school district folks, who are now seeing my child as bright and in need of age-appropriate academic stimulation. It was a revelation to most of them. You would think that it wouldn't be, given that they have heard this for years from me and seen countless home videos of him demonstrating his academic skills. I guess it's all too easy for them to dismiss what comes from a parent, but when one of their own says it, they listen.
The latest IEP meeting was still unbelievably long, and we're still dealing with problematic ideas from the SLP, but at least the team has shifted its focus, and, hopefully, it's attitude. In what seems like a miracle to me, the proposed psychological evaluation has been dropped for now, and the changes in placement that were made last year without our consent -- pulling out of the regular classroom for intervention time -- have been undone too.
On the whole, we are finally getting most of what we have wanted for our son's education. Data-driven assessments of his abilities, appropriate goals and accommodations, a competent vision specialist to help him at school, a solid academic placement, and the appropriate supports to help him succeed in it. You would think we'd be joyful, exuberant even, breathing easily for the first time in three years. But we aren't. Frankly, we've been burned too many times to trust. Our lawyer has recommended that we watch them very closely, and if they get even one inch out of line, we bust them on it. Immediately and hard. The need for this kind of vigilance is telling.
Perhaps the most troubling aspect of everyone's sudden change in direction is the school district's total refusal to acknowledge their part in past problems. Two weeks ago, they sent an email purporting to address our extensive list of "parental concerns" that we had first delivered to them in February. The concerns list covered everything from the communication lock-down that they authored to lack of meaningful data on our son's academic skills to IDEA and ADA violations. Again and again, their responses indicated that they had done nothing wrong and that we were the source of all the problems. What? We certainly weren't the ones who decided we could not speak to anyone at the school or tested our child with materials he could not see or refused to follow federal guidelines for evaluations. We didn't violate our own parent rights, although they violated those rights again and again.
The bottom line is that my family has been through hell for three years. We have faced an avalanche of stress, and we have paid the price physically, mentally, emotionally, and financially. The school district has behaved toward us in a way that is hostile and malicious, and, even worse, they have wasted two years of our son's life by refusing to look at the problems we pointed out and refusing to consider the solutions we proposed. They have transformed him from a child who loved learning to a child who actively dislikes school and acts out to get back at his teachers.
Now everyone is excited to be on track and ready for a fresh start this year. "It's a new day," they say. Well, a new day that includes an apology might be nice. Even something as simple as "we recognize that we have messed up, and now we're determined to do better" would go a long way toward healing. And some acknowledgment of the fact that we've solved the problems for them -- even a small "thanks" -- might be nice too. We located and paid for a specialist in teaching visually impaired students. We located and paid for a physical therapist. We lined up an assistive technology expert. We bought equipment for our son to use in the classroom. We set up a training workshop for his new teachers. We paid a high-priced special education lawyer to guide us toward resolution. We rewrote the entire IEP so that it was clear and accurate, and the goals were specific and measurable.
Essentially, we spent three years fighting to head off and then turn around problems that the school district caused by bad decision making and refusal to listen. When they couldn't fix the problems they caused, we did it for them at great personal cost. And never once has anyone said "we're sorry" or "thank you." I should be a bigger person and let go of my need for acknowledgment of some kind, but I can't seem to do that just yet.
Are we going in a positive direction? Quite possibly. But it will be hard for me to embrace that without someone first acknowledging where we have been.
Saturday, July 26, 2014
Monday, June 23, 2014
Some Days Are Better
Some days are better. After my son's almost totally non-compliant day at school last week, we managed to turn things around through a combination of a stern talking to, a CD player in time out, and the return of the CD player as a reward for better participation in testing at school. He's still not 100% on board with all of this academic testing during the summer, and frankly, if I were his age, I wouldn't be either. He deserves to have a summer break like every other kid instead of being tested 3 hours a day, 4 days a week for 6 weeks because his teachers screwed up the past two years. So we get some grumbles, and we do some convincing, and we try our best to make something fun out of something that just isn't, no matter what you do.
But on the bright side, he has been showing his summer teacher that he can do everything his first-grade teacher said he couldn't and then some. Here's a short list of what we have seen so far:
1. He can sight read any word he is shown, even words years beyond his grade level, provided that the words are in large print.
2. He can spell anything he is asked to spell.
3. He can read large print sentences independently and correctly answer questions about their content.
4. He can match those large print sentences to corresponding illustrations from books.
5. He can listen to stories and informational texts being read to him and correctly answer questions about their content.
6. He can identify the missing number when one is left out of a sequence.
7. He can count using ten frames.
8. He can add sets of ten frames.
9. He can identify 3D shapes (including pyramid, rectangular prism, cube, cylinder, and sphere).
10. He can identify which shapes have particular numbers of faces, edges, and vertices.
11. He can do "math facts" -- adding numbers from 0-20 in his head.
12. He can identify a penny, nickel, dime, quarter, and dollar when shown the words or the monetary value.
13. He can add the value of sets of 3 and sometimes 4 mixed coins in his head.
14. He can identify fractions (1/2, 1/3, 1/4, 1/5, 1/6, 1/10/ and 1/12) by picture and by number.
15. He can compare all of these fraction values using greater than and less than symbols (< >).
16. He can correctly use capitalization and end punctuation in sentences.
His summer teacher's summary: "He can do everything I have asked him to do, if he wants to do it."
And this is the kid who, according to his first grade teacher, cannot read, cannot do math, and really does not know anything.
We're grateful to have a teacher who has dedicated herself to enabling our son to show what he knows rather than assuming that he cannot possibly learn because of his disabilities.
But on the bright side, he has been showing his summer teacher that he can do everything his first-grade teacher said he couldn't and then some. Here's a short list of what we have seen so far:
1. He can sight read any word he is shown, even words years beyond his grade level, provided that the words are in large print.
2. He can spell anything he is asked to spell.
3. He can read large print sentences independently and correctly answer questions about their content.
4. He can match those large print sentences to corresponding illustrations from books.
5. He can listen to stories and informational texts being read to him and correctly answer questions about their content.
6. He can identify the missing number when one is left out of a sequence.
7. He can count using ten frames.
8. He can add sets of ten frames.
9. He can identify 3D shapes (including pyramid, rectangular prism, cube, cylinder, and sphere).
10. He can identify which shapes have particular numbers of faces, edges, and vertices.
11. He can do "math facts" -- adding numbers from 0-20 in his head.
12. He can identify a penny, nickel, dime, quarter, and dollar when shown the words or the monetary value.
13. He can add the value of sets of 3 and sometimes 4 mixed coins in his head.
14. He can identify fractions (1/2, 1/3, 1/4, 1/5, 1/6, 1/10/ and 1/12) by picture and by number.
15. He can compare all of these fraction values using greater than and less than symbols (< >).
16. He can correctly use capitalization and end punctuation in sentences.
His summer teacher's summary: "He can do everything I have asked him to do, if he wants to do it."
And this is the kid who, according to his first grade teacher, cannot read, cannot do math, and really does not know anything.
We're grateful to have a teacher who has dedicated herself to enabling our son to show what he knows rather than assuming that he cannot possibly learn because of his disabilities.
Tuesday, June 17, 2014
One of those days
We all have those days. You know the ones. When nothing goes as planned, and there's no moment of redemption that suddenly wipes out all of the grief and aggravation.
That's today at my house.
Son #2 woke up on the wrong side of the bed, cranky from the moment he opened his eyes. He cried when he had to get dressed. He cried because he didn't want what I gave him for breakfast. Then he cried when his brother took it from him. He cried because I expected him to walk to the car instead of be carried, and he cried that he didn't get to open the door because he was being carried. On and on.
Son #1 amused himself by antagonizing son #2. I didn't find it nearly as entertaining as he did.
Son #1 went off to ESY for yet more summer testing. Our school district finally admitted that they have no data on his academic skills and therefore cannot set measurable annual goals for him for next year. Their way of fixing this is to have a summer teacher test him on every bit of the curriculum from the past two years he has been in school. He has not been enjoying this (go figure). Today he refused to participate in the first math assessment and ended up spending over an hour on what should have taken 15 minutes at most. He repeatedly and purposefully selected the wrong answer. He griped. He yelled for me. He stared into space. He developed an intense interest in everything in reach except the test materials. This kid is cut out for protest work as he grows up. He is stubborn to the extreme and infinitely creative when it comes to devising ways to thwart people.The teacher outlasted him, but it wasn't pretty, and most of today's testing session was a waste. Notably, when they got to something he enjoys, toward the end, he flew through it with 100% accuracy. He is legally blind but flew through sight reading large print words with no trouble, even words that are above his grade level. He could have performed equally well on the first part of the test, when he was doing math, but he chose not to.
It's hard to know how to parent effectively on days like today.
I found myself frustrated with son #2 but able to deal with his tantrums fairly well. He's only 3, after all, and he's testing the waters. He wants to see if he can get everything he wants by having a fit, and today he saw that the answer is "no." He has seen this before, and he will see it again. He will mellow with time and learn that he is part of the family, not the head of it.
Things are more complicated with son #1. He's testing the waters too, but he is seven years old, and he knows better than to act like he did today. I get angry when he does. I don't know what it is about him. He seems to have this fundamental inability to play along with something he doesn't want to do. And it's killing me because the stakes are so high this summer. This is his one chance to prove that he can do grade level work and that he belongs in a general education class in school. Our one saving grace is that unlike previous teachers, his summer teacher understands the difference between can't and won't. She knows what he's doing, and she gets that his refusal to participate on days like today is a product of will rather than a marker of poor academic ability. But that doesn't help in the long run, because without data that demonstrates his school skills, he'll spend yet another being presented with material that is way below him and acting out because he's bored. He'll come to hate school even more than he does now. You see the cycle.
He should not have to prove that he has the right to be in school, but because of his disabilities, he does. He will not be accepted in a regular class without clear proof that he can succeed. And he's not interested in humoring the people who insist that he has to offer proof.
Ick.
What to do? How can I effectively parent a child who seems determined to sabotage his own success, knowing that if I give in to him, his future will be limited in ways that have nothing to do with his disabilities and everything to do with other people's preconceptions?
That's today at my house.
Son #2 woke up on the wrong side of the bed, cranky from the moment he opened his eyes. He cried when he had to get dressed. He cried because he didn't want what I gave him for breakfast. Then he cried when his brother took it from him. He cried because I expected him to walk to the car instead of be carried, and he cried that he didn't get to open the door because he was being carried. On and on.
Son #1 amused himself by antagonizing son #2. I didn't find it nearly as entertaining as he did.
Son #1 went off to ESY for yet more summer testing. Our school district finally admitted that they have no data on his academic skills and therefore cannot set measurable annual goals for him for next year. Their way of fixing this is to have a summer teacher test him on every bit of the curriculum from the past two years he has been in school. He has not been enjoying this (go figure). Today he refused to participate in the first math assessment and ended up spending over an hour on what should have taken 15 minutes at most. He repeatedly and purposefully selected the wrong answer. He griped. He yelled for me. He stared into space. He developed an intense interest in everything in reach except the test materials. This kid is cut out for protest work as he grows up. He is stubborn to the extreme and infinitely creative when it comes to devising ways to thwart people.The teacher outlasted him, but it wasn't pretty, and most of today's testing session was a waste. Notably, when they got to something he enjoys, toward the end, he flew through it with 100% accuracy. He is legally blind but flew through sight reading large print words with no trouble, even words that are above his grade level. He could have performed equally well on the first part of the test, when he was doing math, but he chose not to.
It's hard to know how to parent effectively on days like today.
I found myself frustrated with son #2 but able to deal with his tantrums fairly well. He's only 3, after all, and he's testing the waters. He wants to see if he can get everything he wants by having a fit, and today he saw that the answer is "no." He has seen this before, and he will see it again. He will mellow with time and learn that he is part of the family, not the head of it.
Things are more complicated with son #1. He's testing the waters too, but he is seven years old, and he knows better than to act like he did today. I get angry when he does. I don't know what it is about him. He seems to have this fundamental inability to play along with something he doesn't want to do. And it's killing me because the stakes are so high this summer. This is his one chance to prove that he can do grade level work and that he belongs in a general education class in school. Our one saving grace is that unlike previous teachers, his summer teacher understands the difference between can't and won't. She knows what he's doing, and she gets that his refusal to participate on days like today is a product of will rather than a marker of poor academic ability. But that doesn't help in the long run, because without data that demonstrates his school skills, he'll spend yet another being presented with material that is way below him and acting out because he's bored. He'll come to hate school even more than he does now. You see the cycle.
He should not have to prove that he has the right to be in school, but because of his disabilities, he does. He will not be accepted in a regular class without clear proof that he can succeed. And he's not interested in humoring the people who insist that he has to offer proof.
Ick.
What to do? How can I effectively parent a child who seems determined to sabotage his own success, knowing that if I give in to him, his future will be limited in ways that have nothing to do with his disabilities and everything to do with other people's preconceptions?
Saturday, June 14, 2014
Headed to Abilene
I first heard of the Abilene paradox years ago through my father-in-law. The gist of it is that a group of people ends up doing something none of them really want to do only because individual members of the group think their opinion differs from everyone else's and decide not to raise objections. Before you know it, everyone is in Abilene, even though everyone (or almost everyone) knew it was a bad idea to go there.
Well, my family is on the road to Abilene, and I'll be damned if I can figure out how to turn the car around.
For well over a year now, the school district has been pressuring us to have our son undergo a psychological evaluation. It first came up in April 2013. I was invited to a meeting to talk about educational planning. What it was really about was three district employees trying to railroad me into signing a consent form for a psych eval. The reasons given for the eval were cryptic at best -- "we need more information because we don't know what we don't know" -- and sinister at worst -- "this will determine his educational path." When I pressed on this, I was presented with something that sounded much more acceptable -- song and dance about their needing teaching methods. I actually get that. My son isn't your typical kid. Teaching him and then enabling him to show what he knows requires some creativity. You have to adapt for his vision and his CP and the fact that he's nonverbal. But that's not what it was really about. After an hour, it seemed clear to me that what they wanted was a test that would place a label on my son, a label that would enable them to remove him from mainstream education and let them off the hook in terms of trying to figure out how to work with him.
I didn't make a decision on the spot, though. I took the offered phone number of the psychologist who would be going the testing and said I would call her for further information before deciding. The special education director assured me that the psychologist knew all about my son because she had read his IEP and would be perfectly capable of testing him. Well, as it turns out, no. She didn't know much of anything. Most disturbing was the fact that she did not know he was nonverbal. She went on at length about the verbal response section of the test that would be used to determine his IQ. When I asked how she might adapt that test for a nonverbal students and she said she was not sure if she could. She would be giving a verbal test to my nonverbal child. She would be setting him up to fail. Needless to say, I said "no" to this evaluation. In its place, I asked the district to consider something that would be much more useful, an assistive technology eval aimed at setting up vision and communication accommodations so that he could be included in the mainstream classroom. The district finally got this rolling 7 months later and botched it, but that's a story for another time.
I thought the business of the psych eval was done. After all, the parent rights document my husband and I are given at every IEP meeting says that our child cannot be evaluated without out consent. We did not give consent for the psychological evaluation, so that should have been the end of it. What actually happened was over the next year, every time the IEP team met or I spoke with the special education director, she pressured me to go through with the psychological evaluation. I explained many times why I had said no, and this made no difference.
Here we are, 14 months later, and we're still getting leaned on to go through with the evaluation. Under the advice of our lawyer, my husband and I agreed to a telephone conference with the proposed evaluator and representatives from the school district. We also began researching what would be an appropriate test and searching for a psychologist to give it. Our searches proved to be fruitless. Countless experts all said the same things -- an appropriate test does not exist; it would be useless to test the child before he has a workable communication system in place; they would not evaluate and did not know of anybody who would.
The conference call did not do anything to relieve our concerns. The "expert" evaluator who supposedly had been given my son's IEP knew nothing about him. She acknowledged that there is no appropriate test. She did not know how she might adapt an existing test for him and stated that doing so would invalidate the test.The test would be completed in 1.5-3 hours.She would meet my son for the first time and evaluate him all in the same session. The output from the test would be a score that would let the district know what we could expect his performance to be in school. It would assist with eligibility and placement decisions. When I asked what information the test would offer beyond what we have already gotten from extensive vision evaluations, a fine motor evaluation, a gross motor evaluation, an OI evaluation, and 6 weeks of academic testing to assess his knowledge in every area of the state's core curriculum for K and 1st grade students, I was told that the psych eval would just give more information, an assessment of his cognitive ability, and his level of achievement.. When I asked questions about the validity of results, I got nothing. I was told that they felt confident they could evaluate effectively but could make no guarantees that the picture of his abilities would be at all accurate or the test at all valid for a student like him because there is no appropriate IQ test for a student like him.
Experts I shared this information with all said "No. Do Not Do This." The general consensus was "it's a trap." It's Abilene.
Yet, here we are, considering going there. We know that this pressure from the school district will not go away. They will keep asking and asking and asking. This alone would not be enough to make us cave. If I can withstand my younger son's meltdowns in the toy aisle in Wal-Mart or the Chinese water torture of my older's son's attempts to drive me insane with the behaviors that he knows get under my skin, I can hold out on the district. The real reason we're thinking about it is that our lawyer has suggested we may not have a choice. If the whole school situation blows up and goes to court (and it likely will), we will have a better chance of winning if we are seen as cooperative, collaborative, etc. If we take this trip to Abilene, it will look better for our side in the end. If we don't, the district can use our refusal to get out of some of the IDEA violations they have committed. The logic there is wrong and it's twisted, but sometimes these things are. So we have been advised to register our concerns, go along with the eval, and get a private one done that will be more appropriate and effective so that we can have our own data to put on the table to undercut theirs. The problem there, of course, is that we can find any psychologist willing to evaluate. They all think it's such a colossally bad idea that they won't risk their professional reputations by doing it. This leaves us in a bind. If we do go along with the district's plan, we won't have our own eval to fights against theirs.
We know the test won't be valid and will, in fact, show that our very bright son has the IQ of a doorstop. Every expert we have consulted except the proposed evaluator knows this. Our lawyer knows this too. Abilene looks a whole lot like a test that we know our kid is destined to fail, not because he's not capable, but because the evaluation is not appropriate or accessible for him. But we may just have to go there.
Well, my family is on the road to Abilene, and I'll be damned if I can figure out how to turn the car around.
For well over a year now, the school district has been pressuring us to have our son undergo a psychological evaluation. It first came up in April 2013. I was invited to a meeting to talk about educational planning. What it was really about was three district employees trying to railroad me into signing a consent form for a psych eval. The reasons given for the eval were cryptic at best -- "we need more information because we don't know what we don't know" -- and sinister at worst -- "this will determine his educational path." When I pressed on this, I was presented with something that sounded much more acceptable -- song and dance about their needing teaching methods. I actually get that. My son isn't your typical kid. Teaching him and then enabling him to show what he knows requires some creativity. You have to adapt for his vision and his CP and the fact that he's nonverbal. But that's not what it was really about. After an hour, it seemed clear to me that what they wanted was a test that would place a label on my son, a label that would enable them to remove him from mainstream education and let them off the hook in terms of trying to figure out how to work with him.
I didn't make a decision on the spot, though. I took the offered phone number of the psychologist who would be going the testing and said I would call her for further information before deciding. The special education director assured me that the psychologist knew all about my son because she had read his IEP and would be perfectly capable of testing him. Well, as it turns out, no. She didn't know much of anything. Most disturbing was the fact that she did not know he was nonverbal. She went on at length about the verbal response section of the test that would be used to determine his IQ. When I asked how she might adapt that test for a nonverbal students and she said she was not sure if she could. She would be giving a verbal test to my nonverbal child. She would be setting him up to fail. Needless to say, I said "no" to this evaluation. In its place, I asked the district to consider something that would be much more useful, an assistive technology eval aimed at setting up vision and communication accommodations so that he could be included in the mainstream classroom. The district finally got this rolling 7 months later and botched it, but that's a story for another time.
I thought the business of the psych eval was done. After all, the parent rights document my husband and I are given at every IEP meeting says that our child cannot be evaluated without out consent. We did not give consent for the psychological evaluation, so that should have been the end of it. What actually happened was over the next year, every time the IEP team met or I spoke with the special education director, she pressured me to go through with the psychological evaluation. I explained many times why I had said no, and this made no difference.
Here we are, 14 months later, and we're still getting leaned on to go through with the evaluation. Under the advice of our lawyer, my husband and I agreed to a telephone conference with the proposed evaluator and representatives from the school district. We also began researching what would be an appropriate test and searching for a psychologist to give it. Our searches proved to be fruitless. Countless experts all said the same things -- an appropriate test does not exist; it would be useless to test the child before he has a workable communication system in place; they would not evaluate and did not know of anybody who would.
The conference call did not do anything to relieve our concerns. The "expert" evaluator who supposedly had been given my son's IEP knew nothing about him. She acknowledged that there is no appropriate test. She did not know how she might adapt an existing test for him and stated that doing so would invalidate the test.The test would be completed in 1.5-3 hours.She would meet my son for the first time and evaluate him all in the same session. The output from the test would be a score that would let the district know what we could expect his performance to be in school. It would assist with eligibility and placement decisions. When I asked what information the test would offer beyond what we have already gotten from extensive vision evaluations, a fine motor evaluation, a gross motor evaluation, an OI evaluation, and 6 weeks of academic testing to assess his knowledge in every area of the state's core curriculum for K and 1st grade students, I was told that the psych eval would just give more information, an assessment of his cognitive ability, and his level of achievement.. When I asked questions about the validity of results, I got nothing. I was told that they felt confident they could evaluate effectively but could make no guarantees that the picture of his abilities would be at all accurate or the test at all valid for a student like him because there is no appropriate IQ test for a student like him.
Experts I shared this information with all said "No. Do Not Do This." The general consensus was "it's a trap." It's Abilene.
Yet, here we are, considering going there. We know that this pressure from the school district will not go away. They will keep asking and asking and asking. This alone would not be enough to make us cave. If I can withstand my younger son's meltdowns in the toy aisle in Wal-Mart or the Chinese water torture of my older's son's attempts to drive me insane with the behaviors that he knows get under my skin, I can hold out on the district. The real reason we're thinking about it is that our lawyer has suggested we may not have a choice. If the whole school situation blows up and goes to court (and it likely will), we will have a better chance of winning if we are seen as cooperative, collaborative, etc. If we take this trip to Abilene, it will look better for our side in the end. If we don't, the district can use our refusal to get out of some of the IDEA violations they have committed. The logic there is wrong and it's twisted, but sometimes these things are. So we have been advised to register our concerns, go along with the eval, and get a private one done that will be more appropriate and effective so that we can have our own data to put on the table to undercut theirs. The problem there, of course, is that we can find any psychologist willing to evaluate. They all think it's such a colossally bad idea that they won't risk their professional reputations by doing it. This leaves us in a bind. If we do go along with the district's plan, we won't have our own eval to fights against theirs.
We know the test won't be valid and will, in fact, show that our very bright son has the IQ of a doorstop. Every expert we have consulted except the proposed evaluator knows this. Our lawyer knows this too. Abilene looks a whole lot like a test that we know our kid is destined to fail, not because he's not capable, but because the evaluation is not appropriate or accessible for him. But we may just have to go there.
Monday, June 9, 2014
Beginnings
I'm starting this blog because I need an outlet. I don't know if anyone will ever read it, but even if I'm the only audience, it will be worth the effort.
I am a mother of two boys, the older of whom has multiple disabilities. Due to extreme prematurity, he lives with cerebral palsy, hydrocephalus, and severe visual impairment. He uses a walker to ambulate, cannot feed himself, is almost completely nonverbal, and is legally blind. He is also extremely intelligent, possesses a keen sense of humor, and has questionable taste in music.
Every day, my family is doing the seemingly impossible. We are fighting to have our local school district accommodate our son in the general education program. We are expecting him to be educated up to his mental rather than his physical potential. And we are meeting resistance every step of the way.
We are fighting to give both our sons the love and attention they need, and to give them as typical a life as possible. We are working to nurture our younger son so that he does not feel overshadowed by his brother's needs.
We are fighting to keep our marriage alive and well in the midst of tremendous stress.
We are doing the impossible, one day at a time.
I need a place to write the unvarnished truth of our life, in all of its beauty and ugliness. I hope this blog will be that place.
I am a mother of two boys, the older of whom has multiple disabilities. Due to extreme prematurity, he lives with cerebral palsy, hydrocephalus, and severe visual impairment. He uses a walker to ambulate, cannot feed himself, is almost completely nonverbal, and is legally blind. He is also extremely intelligent, possesses a keen sense of humor, and has questionable taste in music.
Every day, my family is doing the seemingly impossible. We are fighting to have our local school district accommodate our son in the general education program. We are expecting him to be educated up to his mental rather than his physical potential. And we are meeting resistance every step of the way.
We are fighting to give both our sons the love and attention they need, and to give them as typical a life as possible. We are working to nurture our younger son so that he does not feel overshadowed by his brother's needs.
We are fighting to keep our marriage alive and well in the midst of tremendous stress.
We are doing the impossible, one day at a time.
I need a place to write the unvarnished truth of our life, in all of its beauty and ugliness. I hope this blog will be that place.
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