For many, the first week of September 2011 will be remembered for an earthquake and hurricane hitting our region all within one week. For us it wasn't the force of natural disasters that rocked our world; our family will remember that first week of September for different reasons.
O and C were supposed to start preschool the week after Labor Day. I took the kids to the Doctor's office for their yearly shots and check up. O and A were supposed to have their appointment together and C's appointment was scheduled for 3 days later. Kell and I had been worrying about C's development for quite some time, and I just felt I needed C to be seen sooner. I called the Doctor's office and asked to switch C and O's appointment, and expressed some of my concerns with the nurse. We arrived to the office a little early, and I herded all three children into the waiting room. Anyone with multiple kids knows that a visit to the Doctor occurs frequently. My children are no stranger to the office and the staff all know us by name.
After just a few minutes of waiting, it was our turn. The nurse led A and C to the scale and measuring wall. A stood proudly on the scale and was excited to learn that he finally broke 60lbs and was well over 4 feet tall. C on the other hand wanted nothing to do with the scale. The nurse patiently tried and tried to coerce him to stand tall, and still but he just cried, jumped and fidgeted. She tried to ask him what the problem was, but at 3 years old, C can't talk. My face turned red, I broke out in a sweat, and had to count to ten before I explained that he wouldn't be able to tell her why he was scared. She had me hold his hands, and was finally able to get a weight and height on him.
We made our way to the examination room, and the nurse then asked for the history on the 2 boys. Of course O, being my outspoken child, wanted to put his two cents in, "C can't talk", he explained, "He has no words". I let that comment sink in. My 3 year old has no words. I went through C's history, though I knew it was all in the chart. C seemed, on paper, to be fine up until 15-18 months. He had a handful of words, had learned to walk, and though he was slower than his brothers with his development, seemed to be hitting the milestones within the "normal" range. Then somewhere around 20 months he just stopped, everything. He stopped talking, stopped trying, stopped learning, and even forgot many of the words he had learned before. Everyone told me not to worry, that he was just taking advantage of being the youngest child. They suggested that maybe we babied him too much. He can't run, can't jump, and doesn't seem to make sense of anything we say to him, unless he wants to. That can't be my fault, can it? She then asked about A, but of course, A is wonderful. He is an honor roll student, loves sports, reads above grade level, and is just a great kid.
A few minutes later the doctor came in. C and I were attempting to read a book, while the other two boys played a game on my phone. He observed C for a few minutes, repetitively turning pages and showing no interest in the words I was able to read before the next page was turned. The doctor sat in his chair and asked C to come over to him; C ignored him. He moved his chair closer and asked again, and then took C's hand and tried to hug him. "Tell me about C" he said to me.
I again went through what I had just explained to the nurse. "Could he have a hearing problem?" I asked. Could his ears be causing him to not be able to run, jump, and if he can't hear, wouldn't that explain his inability to communicate? I went over all of the health issues C had in the past, Scarlet Fever, Swine flu, unexpected and really intense belly aches, falls down the stairs, and I explained that he just doesn't let us know that he is sick, until his fever is blood boiling and he becomes lethargic.
The doctor had C demonstrate his run down the hallway, had him attempt to jump, and then examined his eyes and ears.
Then the dreaded... "Mrs. Russell, C's ears appear to be fine, but we will schedule him for an appointment with a hearing specialist to confirm. What I really think is that C is Autistic"... Then the room grew dark, his words seemed to fade away, I broke out in yet another sweat. How could this be? C, my loving and caring baby. The sweet face that wants so badly for everyone to understand his language, but that no one really gets. I had looked up Autism when I first began to suspect that something was not quite right, but he didn't seem to have the tell tale symptoms. Sure he stomped his feet and pounded his chest, but it was to the beat of his music (even though he sometimes was the only one that heard the song). Sure he wouldn't look people in the eyes, but it was just strangers eyes, wasn't it? Maybe I noticed that he had slight OCD when it came to toys or DVD's but wasn't that just because he loved them so much? The doctor then started writing prescriptions, for services, blood work, Kennedy Krieger (it just sounded scary), hearing tests, eye examinations. I started to feel over-whelmed. My beautiful baby was going to be poked and prodded, and pushed from here to there. The rest of the visit went by in a blur.
I hustled the children out of the office, and drove, with tears in my eyes, music blaring, and tried to keep my calm, as my children sat happily in the back seat.
I dropped them off to daycare, and there, after the kids ran outside, I cried, hysterically as I tried to recall all of the details, the people the doctor told me to call. On the news, in the background, they called for evacuation of the island, my one place of refuge.
On my way back to the Island I called Kell. In a fury, I told him the news, but forgot to tell him what kid I was talking about. After some confusion, he finally understood, C was Autistic.
And so the preparations for the hurricane began.
Friday, December 30, 2016
Monday, January 20, 2014
It is Time
To Quote the IDEA Act
"Disability is a natural part of the human experience and in no waydiminishes the right of individuals to participate in or contribute to society.
Improving educational results for children with disabilities is an essential
element of our national policy of ensuring equality of opportunity, full
participation, independent living, and economic self-sufficiency for
individuals with disabilities."
I consider myself to have a fairly strong personality. I fight for what I believe in, and if I am not sure if the information I am presenting is accurate, I am known to spend hours, all night even, researching, to make sure that the information I share is precise. I have also taken the personal stance that when it comes to opinion, that it is mine, to hold and cherish. While some may agree, others may not. It is the beauty of opinion, we are each entitled to our own, and until we have enough valid information to change our opinion, we are able to hold it, like a treasure. Ours to keep. Sometimes that opinion can cause trouble, but more often than not, it unites us with those who are like minded. It allows us to form relationships that we may not have otherwise fostered. It can bring people who are from many walks of life together for a purpose.
I don't like it when my opinion, my way of thinking is challenged, and I am forced to adopt another viewpoint for no reason other than surrender. To serve the greater good, to ensure that what I believe in as a whole is able to stay in tact.
It is apparent, through interactions with other parents and caregivers, far and wide, that opinion and belief of the parent is not something that is held to the high standard it should be, when we fight for our children's needs. Whether it be in the school system, with healthcare, with legislation, or the many other areas that impact our daily living, our voice often goes unheard.
We are forced to conform, when conformity many times does not fit our children's needs. We need to fit the square post in the round hole, and try as we might, it just will not fit. What worked for that child over there just isn't the best approach for my child. What works for my child, unfortunately causes unnecessary set backs in the child next to him.
There is no disability that presents itself in the same way for each child. We talk about the Autism Spectrum, but children with Down's Syndrome have a spectrum of needs, children with Cerebral Palsy have a spectrum of needs, children with ADD/ ADHD have a spectrum of needs, a child with ID has different needs than another child with ID of the same age and IQ. No two children are alike, and yet, as parents, we are so often asked to put our child in the box, and not allow ourselves to think outside the box for additional options that may suit the needs of our child better.
We have allowed ourselves to be silenced, our opinion isn't valid, as there are experts sitting next to us, who know what our child needs, and are more educated on the subject than we are as the primary care giver. Sure, we are preached to that we are the best advocate for our child, but when we attempt just that, we are shut down, told that we are wrong, are given examples of children, like ours, who have succeeded with the standard approach.
I fell into the silenced category. I allowed myself to believe that the experts were more experienced, and certainly knew more than I ever could, had worked with more than just my one child, had years of clinical and practical experience, and who am I to question their opinion. My opinion should be the one in question.
You see, it isn't that I am wrong. Again, an opinion is just a theory based on the facts we are given and formulated with our personal morals and values. An opinion is ours, not to be belittled or shut down by anyone. By allowing my opinion to be thrust aside, I am allowing myself to be silenced. While not every opinion can be validated, certainly a parent does and should have a voice concerning the care and well being of their child. Certainly it should be held to a higher standard than the opinion of someone just meeting the child and spending an hour, as opposed to spending a lifetime, with the child.
When will we, as parents, be able to openly and without fear of retaliation, be able to voice our opinion and be heard? When will we feel that we are truly a part of the team, not the adversary, making the lives of those whose salaries we pay, through our tax dollars, harder, more difficult.
There is a level of distrust between parents and the school system, conversely creating distrust amongst the school system and parents. In addition, we have teachers fighting for our children one day, and the next are suddenly silent. We have been forced to pay for advocates to ensure our children's needs are met, and that services are provided, further extending our already tight budgets, to only have to continuously fight further, longer, harder, and still feel, in the end, that our opinion again doesn't count, and that for the greater good of our child's education, it is best to concede. Silenced again, forced to conform.
It is time to ensure that our voice is heard. To let it be known that our opinion does matter. It is time to hold those accountable, as we entrust our children's future in their hands. To quote one of my favorite movies...
"It is time", Rafiki, The Lion King.
As many of you know, I am President and Founder of Kinera Foundation. While these are my personal views, it certainly is not the opinion of our Foundation or Board as a whole. Kinera Foundation strives to bridge the gap in communication between professional agencies, such as the BOE, and will continue to work towards this goal.
Saturday, February 23, 2013
The path to, where?
Wow, it has been a full year since I posted something to this page! I still write, I just haven't posted.
I have gone through some incredible highs, and some crazy lows in the past year. We make a break-through, we take a step back, we overcome one obstacle, and are faced with another.
We have met some incredible people in the past year. Families whose children struggle daily to speak one word, families who spend thousands advocating for their children, ensuring that they are treated with the same respect as any other child. We have met specialists whose objective is to help children achieve what you and I would never think to be a notable accomplishment. We have had these special people cry with us, laugh with us, teach us, and mentor us. We have been blessed this year to find such a strong support group, and even more so, new friends.
In the past year we have learned to be adaptable to C. Our whole family has had to make adjustments. Little things, such as locking the doors in the morning. Not because we fear someone will break in, but because we fear C will break out. That was a scary moment, our neighbor across the street brought C back to me at 6:45 in the morning because as I was getting ready, C crept out the back door. We have had to adjust our diet, as C has a wheat and egg allergy, and any food with preservatives or additives sends him on the first train to Crazyville. We find that family outings require more prep, and the willingness of Kell or I to step away from the activity to give C much needed breaks. We have had to learn how to parent a child who has a knack for pretending he has no clue what you just said, or that his name is C. We have had to embrace A and O a little tighter at night to ensure that they know we love them just as much, if not more than we ever did. Kell and I have tested the strength of our marriage and love for one another, have learned to compromise, and found that we are as much in love now, as we ever were.
In the past year I have embraced my fears, and learned to open up about what scares me. An important and huge breakthrough for me. I was full of anxiety and angst when I was too quiet. Now I may be loud and verbal, but at least I am not a raging bull ready to attack the red cape. My biggest fear... our future. It may be silly to worry about it now, but how can I not? Every parent dreams of what their children will become, the college they will attend, and even take guesses at their career paths, their future husband or wife. With C, I literally see white. There is no future that I can envision. I don't know what tomorrow will bring, I don't know if he will be the kid that makes strides and becomes a genius, or if he will be the kid that hits an intellectual plateau, and what we see is what we get. It may sound unreasonable, even irrational, but it is real. It is my fear. I have no vision of my son's future, and it scares the hell out of me.
Last year I feared that C would never whisper "I love you" before drifting off to sleep. He tells me "I wub chu" every night before bed now. He even says "ha go nigh nigh". (Translates to "I love you, have good night night) We overcame that fear... I know that one day C will have a future, and I will look back and realize that the fear of the unknown was unfounded. But today, and the foreseeable future, the unknown is scary "what if". Our journey continues, our what if's remain, our family, however is stronger than ever.
I have gone through some incredible highs, and some crazy lows in the past year. We make a break-through, we take a step back, we overcome one obstacle, and are faced with another.
We have met some incredible people in the past year. Families whose children struggle daily to speak one word, families who spend thousands advocating for their children, ensuring that they are treated with the same respect as any other child. We have met specialists whose objective is to help children achieve what you and I would never think to be a notable accomplishment. We have had these special people cry with us, laugh with us, teach us, and mentor us. We have been blessed this year to find such a strong support group, and even more so, new friends.
In the past year we have learned to be adaptable to C. Our whole family has had to make adjustments. Little things, such as locking the doors in the morning. Not because we fear someone will break in, but because we fear C will break out. That was a scary moment, our neighbor across the street brought C back to me at 6:45 in the morning because as I was getting ready, C crept out the back door. We have had to adjust our diet, as C has a wheat and egg allergy, and any food with preservatives or additives sends him on the first train to Crazyville. We find that family outings require more prep, and the willingness of Kell or I to step away from the activity to give C much needed breaks. We have had to learn how to parent a child who has a knack for pretending he has no clue what you just said, or that his name is C. We have had to embrace A and O a little tighter at night to ensure that they know we love them just as much, if not more than we ever did. Kell and I have tested the strength of our marriage and love for one another, have learned to compromise, and found that we are as much in love now, as we ever were.
In the past year I have embraced my fears, and learned to open up about what scares me. An important and huge breakthrough for me. I was full of anxiety and angst when I was too quiet. Now I may be loud and verbal, but at least I am not a raging bull ready to attack the red cape. My biggest fear... our future. It may be silly to worry about it now, but how can I not? Every parent dreams of what their children will become, the college they will attend, and even take guesses at their career paths, their future husband or wife. With C, I literally see white. There is no future that I can envision. I don't know what tomorrow will bring, I don't know if he will be the kid that makes strides and becomes a genius, or if he will be the kid that hits an intellectual plateau, and what we see is what we get. It may sound unreasonable, even irrational, but it is real. It is my fear. I have no vision of my son's future, and it scares the hell out of me.
Last year I feared that C would never whisper "I love you" before drifting off to sleep. He tells me "I wub chu" every night before bed now. He even says "ha go nigh nigh". (Translates to "I love you, have good night night) We overcame that fear... I know that one day C will have a future, and I will look back and realize that the fear of the unknown was unfounded. But today, and the foreseeable future, the unknown is scary "what if". Our journey continues, our what if's remain, our family, however is stronger than ever.
Wednesday, February 1, 2012
Step by step
I have 3 drafts started, all within the last 3 weeks, but so much has happened and time is so limited, I haven't had a chance to sit down and finish any. Hopefully I can keep my eyes open just long enough to get all of these thoughts out, and maybe find some relief that writing it all down brings.
We had our final IEP meeting last week. Leading up to it, I knew that they were considering putting Colin in preschool at the Elementary School, but like every other meeting with the team, they could not give any real insight. For those who don't know sitting in an IEP meeting is like sitting in a deposition. There is an enormous table, with teachers, psychologists, specialists, advocates, parents and children (Owen and Colin are both frequently at the meeting) sitting around. Everyone asks questions, and sometimes 3-4 times in a different way each time. Information that was presented previously is reviewed, and to be honest most times I feel like a bi-stander just watching it all unfold.
I expected to heave a sigh of relief after this meeting. I thought that I had at least an idea of what would be presented, and thought that maybe putting a plan in place would give our family the structure and help we desperately needed. When we walked into the room, we found 2 reps from the Board of Education, a Special Education Pre-School teacher, the Speech Therapist, Occupational Therapist, Head of Special Ed for Colin's base school, Kell, myself, Colin, and a friend and advocate that works for the Board of Ed. Just walking in was overwhelming. Immediately there was shuffling of paper, review of each previous meeting, hearing once again that Colin is indeed Autistic, and then a flurry of activity. Everyone seemed to be talking at once, the Speech Therapist requested to meet with Colin twice a week, the Occupational Therapist once a week, the advocate requested Picture Stories be made for Colin, the Special Ed teacher requested Colin have an aid, and all the while, I sat thinking "What does this mean?". As everyone continued to request services for Colin, and the Head of the Dept typed feverishly away, it seemed to me that we had skipped an essential step. No one had decided, talked about, or asked where all of these services would take place. Again, we heard that they wanted Colin to be enrolled in Pre-School, but not once during our current discussions, did anyone mention anything about a formal classroom setting. I started to panic, what if I needed to be home to provide this to Colin, what if they needed me to shuttle Colin from one appointment to the next. What happened to structure, why was no one telling us what the actual plan was for him, before deciding what steps would be taken?
Finally, the rep from the Board of Ed chimed in. "What do you want to see for Colin? What would you like for us to work on?" How do you answer that question when you don't know where your child will be, how all of these plans will work, what the new schedule will entail. As my face grew hot, and I began to feel clammy, I said, "Well I assume he will be in Pre-School, or a class somewhere, right?" And as ironic as it is, they weren't allowed, at that point in the meeting to confirm that he would be in Pre-School.
What kind of system allows an educated group of people to make a plan completely backwards? Why would you not determine where services are to take place before determining what services are to take place? Environment for any child is essential for learning, but a child with special needs certainly needs to have a consistent and structured environment. For some maybe doing all these things at home makes sense, but Kell and I both work full time. Kell's schedule is never consistent. I can't continue to take days and hours off of work, and assume that my employer will be okay with it. Why is it that we have to plan a plan for Colin and then decide where that plan will take place? Why, if everyone in the room knew that a classroom setting was best, could we not just say so.
I know that there are many teachers who will read this, and I would love for you to enlighten me. This process is so overwhelming for a parent. You walk into a room, hoping beyond hope that everything you felt was wrong, everything doctors and specialist said was over-exaggerated. A handbook is given, but is just full of legalities. No one tells you what each step of the process will be. I take that back, they tell you steps "A, B, and C", but leave out the rest of the outline, and there are many more steps than just "A,B,and C". As much as they want to tell you everything that goes on behind closed doors after the meeting, it seems that they can't. I don't understand. I want to hear worst case scenario, and find out that it really isn't as bad as I thought. In this situation, it seemed to me that we were fed the best case scenario, only to have it crash down on us each time we walked in the room.
Don't get me wrong, it hasn't all been bad, I am just disappointed in the process. Every single person we have worked with has been wonderful and supportive, and when I cry, they cry right along with me. I just hate that no real answers can ever be given in the appropriate time.
After I explained that I thought it was best for Colin to be in a place where he would be able to not only have one on one time, but also where he could learn to socialize, and be provided structure in his day that we could not currently provide, they agreed that a classroom setting was the best option for him. For those that don't know, services can be provided at home, and if I was a stay at home mom still, I may have opted for that plan.
Colin started Pre-School 6 days after the IEP meeting. Again, I thought that there would be this overwhelming sense of relief, but instead, I felt anxious. Colin is my youngest. He is riding a bus to school. He is only 3 years old. I am not mentally prepared for him to go to school everyday. He is supposed to be the last to ride a school bus, he should have 3 more years until he goes to school everyday of the week. I feel slightly robbed. I know it sounds selfish, and school will be the best for him, but dropping him off that first day, and watching the teacher carry him by the arm down the hall, while he kicked and screamed and fell to the floor every few steps just solidified my feeling. We cried together on his first day of school.
We are now a full week into school. Colin gets excited when he sees the school bus. Kell is in charge of putting him on the bus because he is able to help Colin get excited to go to school. The teachers, aids, and bus drivers have been wonderful helping us all make this transition. The bus driver even called me on Friday, after a big meltdown when Colin got on the bus, that left us both crying, to tell me that he was just fine. The teacher sends notes home daily, letting me know how he is progressing and transitioning, and after a "crazy mom" note, has even emailed me a few times. I think that Colin is already making strides. He repeats words much more now. He still doesn't offer his own words often, but he is stringing groups of words together.
I think that there will still be a lot of work ahead. It seems that with every day we notice his challenges more and more. I think that we are now more in tune with his needs, and learn his limitations daily. Kell frequently says that he "knows Colin is a genius, he just can't express, in words, his knowledge". I believe that, and am excited to hear his first meaningful sentence and watch the genius unfold.
We had our final IEP meeting last week. Leading up to it, I knew that they were considering putting Colin in preschool at the Elementary School, but like every other meeting with the team, they could not give any real insight. For those who don't know sitting in an IEP meeting is like sitting in a deposition. There is an enormous table, with teachers, psychologists, specialists, advocates, parents and children (Owen and Colin are both frequently at the meeting) sitting around. Everyone asks questions, and sometimes 3-4 times in a different way each time. Information that was presented previously is reviewed, and to be honest most times I feel like a bi-stander just watching it all unfold.
I expected to heave a sigh of relief after this meeting. I thought that I had at least an idea of what would be presented, and thought that maybe putting a plan in place would give our family the structure and help we desperately needed. When we walked into the room, we found 2 reps from the Board of Education, a Special Education Pre-School teacher, the Speech Therapist, Occupational Therapist, Head of Special Ed for Colin's base school, Kell, myself, Colin, and a friend and advocate that works for the Board of Ed. Just walking in was overwhelming. Immediately there was shuffling of paper, review of each previous meeting, hearing once again that Colin is indeed Autistic, and then a flurry of activity. Everyone seemed to be talking at once, the Speech Therapist requested to meet with Colin twice a week, the Occupational Therapist once a week, the advocate requested Picture Stories be made for Colin, the Special Ed teacher requested Colin have an aid, and all the while, I sat thinking "What does this mean?". As everyone continued to request services for Colin, and the Head of the Dept typed feverishly away, it seemed to me that we had skipped an essential step. No one had decided, talked about, or asked where all of these services would take place. Again, we heard that they wanted Colin to be enrolled in Pre-School, but not once during our current discussions, did anyone mention anything about a formal classroom setting. I started to panic, what if I needed to be home to provide this to Colin, what if they needed me to shuttle Colin from one appointment to the next. What happened to structure, why was no one telling us what the actual plan was for him, before deciding what steps would be taken?
Finally, the rep from the Board of Ed chimed in. "What do you want to see for Colin? What would you like for us to work on?" How do you answer that question when you don't know where your child will be, how all of these plans will work, what the new schedule will entail. As my face grew hot, and I began to feel clammy, I said, "Well I assume he will be in Pre-School, or a class somewhere, right?" And as ironic as it is, they weren't allowed, at that point in the meeting to confirm that he would be in Pre-School.
What kind of system allows an educated group of people to make a plan completely backwards? Why would you not determine where services are to take place before determining what services are to take place? Environment for any child is essential for learning, but a child with special needs certainly needs to have a consistent and structured environment. For some maybe doing all these things at home makes sense, but Kell and I both work full time. Kell's schedule is never consistent. I can't continue to take days and hours off of work, and assume that my employer will be okay with it. Why is it that we have to plan a plan for Colin and then decide where that plan will take place? Why, if everyone in the room knew that a classroom setting was best, could we not just say so.
I know that there are many teachers who will read this, and I would love for you to enlighten me. This process is so overwhelming for a parent. You walk into a room, hoping beyond hope that everything you felt was wrong, everything doctors and specialist said was over-exaggerated. A handbook is given, but is just full of legalities. No one tells you what each step of the process will be. I take that back, they tell you steps "A, B, and C", but leave out the rest of the outline, and there are many more steps than just "A,B,and C". As much as they want to tell you everything that goes on behind closed doors after the meeting, it seems that they can't. I don't understand. I want to hear worst case scenario, and find out that it really isn't as bad as I thought. In this situation, it seemed to me that we were fed the best case scenario, only to have it crash down on us each time we walked in the room.
Don't get me wrong, it hasn't all been bad, I am just disappointed in the process. Every single person we have worked with has been wonderful and supportive, and when I cry, they cry right along with me. I just hate that no real answers can ever be given in the appropriate time.
After I explained that I thought it was best for Colin to be in a place where he would be able to not only have one on one time, but also where he could learn to socialize, and be provided structure in his day that we could not currently provide, they agreed that a classroom setting was the best option for him. For those that don't know, services can be provided at home, and if I was a stay at home mom still, I may have opted for that plan.
Colin started Pre-School 6 days after the IEP meeting. Again, I thought that there would be this overwhelming sense of relief, but instead, I felt anxious. Colin is my youngest. He is riding a bus to school. He is only 3 years old. I am not mentally prepared for him to go to school everyday. He is supposed to be the last to ride a school bus, he should have 3 more years until he goes to school everyday of the week. I feel slightly robbed. I know it sounds selfish, and school will be the best for him, but dropping him off that first day, and watching the teacher carry him by the arm down the hall, while he kicked and screamed and fell to the floor every few steps just solidified my feeling. We cried together on his first day of school.
We are now a full week into school. Colin gets excited when he sees the school bus. Kell is in charge of putting him on the bus because he is able to help Colin get excited to go to school. The teachers, aids, and bus drivers have been wonderful helping us all make this transition. The bus driver even called me on Friday, after a big meltdown when Colin got on the bus, that left us both crying, to tell me that he was just fine. The teacher sends notes home daily, letting me know how he is progressing and transitioning, and after a "crazy mom" note, has even emailed me a few times. I think that Colin is already making strides. He repeats words much more now. He still doesn't offer his own words often, but he is stringing groups of words together.
I think that there will still be a lot of work ahead. It seems that with every day we notice his challenges more and more. I think that we are now more in tune with his needs, and learn his limitations daily. Kell frequently says that he "knows Colin is a genius, he just can't express, in words, his knowledge". I believe that, and am excited to hear his first meaningful sentence and watch the genius unfold.
Wednesday, January 4, 2012
New Year, New Outlook
It is the beginning of a New Year, and this year, rather than focusing on resolutions that I know I can't or won't keep, I have resolved to have a new outlook on the year ahead. The day that we found out that Colin was Autistic, or thought to be, I felt lost. I grieved. I felt as if the child I had pictured, had begun to raise, had dreams and ambitions for, was lost. I cried, I was angry, I felt as if I were to blame. I felt helpless and sad for Colin. I felt helpless and sorry for Kell and I. I felt that I started to look at Colin differently, and sometimes, I still catch myself looking at him, and sense he is different. I wondered what it would mean for Austin and Owen. Would they sense the difference, would they resent him, resent us, for what I knew was going to be a long and time consuming road ahead? In our already busy world, how was I supposed to keep up with daily life that was already packed to the brim and add additional responsibilities?
Almost everyone we have told to date has had the same reaction, "if two parents can handle it, it is you and Kell". I sometimes wonder if I can. With technology at my fingertips, it is hard not to become overly consumed with researching symptoms, common traits, new therapies, and stories of families who have children with Autism. Most of the time I walk away more scared and unsure of my parental abilities. There are so many unknowns, so many theories of what may cause the symptoms, so many theories on cures, and techniques to abate the symptoms.
Maybe I am naive. Maybe because I am new to this "world", I am overly optimistic, but this year my resolution will be to embrace. Embrace what Colin has to offer. Stop looking at him as a child with a disability, and start embracing and re-envisioning my dream for him. I think I need to simplify my dreams and aspirations for what is to come. What I have learned in the last three months is that I am blessed. I have spent the last 3 months searching for answers anticipating what is to come, and in the process, I have missed so much. I have fought for just a few more hours in the day, to work, clean, organize my thoughts, my life. In looking for those extra hours, I have missed the precious and funny moments of daily life.
My children are funny, they are intelligent, philosophical, loving and caring. All three of them. In my new outlook on the upcoming year, I plan on focusing more efforts on today. Controlling what I can, and not letting the little details dictate my life. I plan on embracing Colin stomping his foot and pounding his chest, I plan on smiling and cheering his small triumphs on, and not stressing over the accomplishments he hasn't made. I read the most uplifting article, it is below. It has encouraged both Kell and I to change our perspective, appreciate and embrace all that Colin has to offer.
Here are ten things every child with autism wishes you knew:
I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?
My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me: My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become over-stimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.
Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.” Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.
Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.
Because language is so difficult for me, I am very visually oriented. Please show m how to do something rather than just tell me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. A visual schedule is extre helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, and helps me manage my time and meet your expectations. I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.
Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”
Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums, or whatever you want to call them, are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log, noting times, settings, people, activities. A pattern may emerge. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders, and gastrointestinal problems can all have profound effects on behavior.
Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too. The answer to Alzheimer’s, the enigma of extraterrestrial life -- what future achievements from today’s children with autism, children like me, lie ahead? All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.
©2005 Ellen Notbohm
Almost everyone we have told to date has had the same reaction, "if two parents can handle it, it is you and Kell". I sometimes wonder if I can. With technology at my fingertips, it is hard not to become overly consumed with researching symptoms, common traits, new therapies, and stories of families who have children with Autism. Most of the time I walk away more scared and unsure of my parental abilities. There are so many unknowns, so many theories of what may cause the symptoms, so many theories on cures, and techniques to abate the symptoms.
Maybe I am naive. Maybe because I am new to this "world", I am overly optimistic, but this year my resolution will be to embrace. Embrace what Colin has to offer. Stop looking at him as a child with a disability, and start embracing and re-envisioning my dream for him. I think I need to simplify my dreams and aspirations for what is to come. What I have learned in the last three months is that I am blessed. I have spent the last 3 months searching for answers anticipating what is to come, and in the process, I have missed so much. I have fought for just a few more hours in the day, to work, clean, organize my thoughts, my life. In looking for those extra hours, I have missed the precious and funny moments of daily life.
My children are funny, they are intelligent, philosophical, loving and caring. All three of them. In my new outlook on the upcoming year, I plan on focusing more efforts on today. Controlling what I can, and not letting the little details dictate my life. I plan on embracing Colin stomping his foot and pounding his chest, I plan on smiling and cheering his small triumphs on, and not stressing over the accomplishments he hasn't made. I read the most uplifting article, it is below. It has encouraged both Kell and I to change our perspective, appreciate and embrace all that Colin has to offer.
Here are ten things every child with autism wishes you knew:
I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?
My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me: My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become over-stimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.
Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.” Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.
Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.
Because language is so difficult for me, I am very visually oriented. Please show m how to do something rather than just tell me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. A visual schedule is extre helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, and helps me manage my time and meet your expectations. I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.
Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”
Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums, or whatever you want to call them, are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log, noting times, settings, people, activities. A pattern may emerge. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders, and gastrointestinal problems can all have profound effects on behavior.
Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too. The answer to Alzheimer’s, the enigma of extraterrestrial life -- what future achievements from today’s children with autism, children like me, lie ahead? All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.
©2005 Ellen Notbohm
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