This is a post that I have physically began to compose, but have deleted a couple times over the years. In my head I've written it over, and over thousands of times, each time composing it with a little more understanding, but not enough courage, or possibly enough knowledge yet to feel competent to write about it, maybe? I'm not sure. I am sure to get some of it wrong, but what I am sure about is the time I've spent thinking, and knowing my [autistic] brain, and understanding both of my sons, as well as being around others in the autism community has led me to where I am. I think I will get more right then I will get wrong.
So, what is this tumultuous topic that I tread so delicately to address?
Intellectual disability, and Autism; or rather where they intersect.
It's a very taboo topic to even broach within the autism community. If one were to even hint that their child might have an intellectual disability, plus autism to another parent whether this be in person, or online this is almost akin to saying, "I would like to start a fight with you." Never mind that this other person may never even have met the first person's child. All they heard was the words autistic (or autism), and intellectually disabled used in a sentence together, and that's enough to begin a verbal onslaught of angry facts, as if the other person insulted every autistic person under the sun by what they just said.
That in, and of itself is ableist. Let me explain why.
Showing posts with label Intellectual Disability. Show all posts
Showing posts with label Intellectual Disability. Show all posts
Tuesday, October 18, 2016
Tuesday, March 13, 2012
The Scariest Words An Autism Parent Never Wants To Hear
Ask any parent what the scariest words they can imagine coming from their spouse's mouth that pertain to their child and one of the answers is likely to be "I can't find _____" (insert child's name). This is especially true of you're a parent of an autistic child. I had the unfortunate experience to hear this the night before last.
Let me start from the beginning.
Sunday morning started off well. My father in law was in town and wanted to take us all out to do things around town. My husband let me sleep in while he got up with the boys, and even went to go get doughnuts. It was looking to be a pleasant day.
We got into town and settled on eating downtown. The boys were less than thrilled and Beans especially didn't care for the venue change. When I say venue change, I mean not fast food. :) Bubby could not handle that there was no plan to speak of, and was instructed that he was to let others make the plans for once, by Grandpa. He always gets to do what he wants, and it was someone else's turn. We got through lunch with Beans picking at his food the way he always does, but not eating much. Bubby asked upwards of 20 times (in different ways) if we would pleeease go to a museum. Beans and museums aren't a good mix, so we were unable to honor his request, much to his dismay.
We went to a few places and did a bit of window shopping, while taking turns staying in the van with Beans, in the places he finds too noisy or overwhelming. When we arrived at the mall I thought it was a good place for him to finally get out a bit and enjoy his day. He typically likes the mall. However, he remembered he does not like escalators, and the first store we went into had one.So, I had to carry all 55 pounds of screaming Beans out of Sears to the van with onlookers wondering (I'm sure) if I was a kidnapper.
By the time all was said and done when we got home it was almost time for bed. The first thing everyone in my family does when we get home from a long day out is scatter to spend some time alone to regroup. After that it was late and definitely time for baths and bed.
It wasn't long after putting the boys to bed that I hear "Mom, Bean's stinky!" Which is pretty common. No big deal. Except this time Beans decided to get naked before pooping. It was a pooptastrophe and it was everywhere. I handed him off to Dad to get cleaned up and I scrubbed the carpet and the heating vent. Yes, he pooped on the heat register. We got it all cleaned up and put him back to bed at about 10:30. I had to go back in a time or two to tell him to get to bed, and give Bubby a drink. But, relatively quickly after there was silence. I thought Beans had settled in and gone to sleep, as it was late. My husband and I watch TV for awhile and decide it's time for bed at about 12:30.
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We go to do the routine nightly checks on the boys before bed. Usually to uncover faces, and make sure Beans has his blankets on him. Then I hear "I can't find Beans" from my husband. I think to myself, what do you mean you can't find him? I go in the room expecting him to be curled up in the corner of the bed with blankets covering him. I quickly find this NOT to be the case as I remove all the blankets from his bed. Then, I turn my head and see one of the most scary things I've ever seen in my life. The window and the screen is open. I yell "The window is open!" at my husband who proceeds to try to run so fast through the house that he falls down and gets hurt several times. He is not calm in emergency situations. We get outside, in our robes, barefoot, in the cold running around calling for Beans. I begin heading for the backyard, because that's where he often goes when he runs outside. About as I am to turn the corner I see a police car driving down the street. My husband and I begin running for it, yelling "I lost my son!" When we finally get to the car, the officer replies "Is it this one?" We say yes and he asks if he's autistic. I'm so dizzy and out of breath I can almost pass out in the middle of the street. I don't think I've ever been so scared in my entire life.
The officer brings him in and explains that he was called to the next street over about an hour and a half ago because he was found trying to get into someone's house. They opened the door and let him in, then called the police. I so appreciate whoever did that! The officer brought him back to the police station for awhile, then decided to drive around the area he was found to see if any doors were open to indicate maybe where he had come from. That's when he came across us. He asked us if Beans was always moving like he was at the station and when he brought him home, and we verified that yes, he never is still. He always moves and is always into things. The officer said he couldn't keep up with him very well at the station. I'm guessing he thought that he could take him to the station and write up a report, and found out that was not possible in a room that's got much of anything in it. I'm sure he was knocking everything off of desks and shelves and trying to leave. Trying to eat any plants, paper, or whatever he could find. We live in a very small town, so I doubt there were other officers around to help much. There's not too many on duty at once. I think the officer had enough experience with Beans to have some empathy as to how he could be more than a handful. I was so worried that they'd think we were awful parents. He remarked how many gates we have in our house and extra locks. We thought we were on the up and up in safety. Guess beans found the weak spot.
We purchased window alarms yesterday. I don't know if they'll work or not, because he keeps removing the sensor, which does set the alarm off. I know when he removes it, but I don't want to have to be constantly reattaching the alarm everyday, and him getting his ears hurt by the shrill sound of it. I wish I could say he was more cognitively aware of the fact that removing the alarm is going to hurt his ears, but I'm not so sure he'll get that cause and effect. Maybe, he will. I'm still considering other safety measures for his window, and a few others he can get to. I will be doing an entry next on all of the safety precautions that we have done so far to help others (especially newly dxed autism parents) put together a safety kit. You can find that entry here.
This is far from over as Beans ability grows and he learns new skills, but remains unaware of danger. I am astonished that I have sent out e-mails for help in finding him a medic bracelet that he can wear, but not remove and I'm met with a lot of "i don't knows' from people like his autism specialist and developmental disability case manager. This has to be common in the autism population, especially those that are severely affected by their autism/and or intellectual disability. There is nothing in place at this time to help our children if they are lost. More about all of that in my next entry about safety. I am just glad that ours was a happy ending and my handsome guy was returned safely to us.
Let me start from the beginning.
Sunday morning started off well. My father in law was in town and wanted to take us all out to do things around town. My husband let me sleep in while he got up with the boys, and even went to go get doughnuts. It was looking to be a pleasant day.
We got into town and settled on eating downtown. The boys were less than thrilled and Beans especially didn't care for the venue change. When I say venue change, I mean not fast food. :) Bubby could not handle that there was no plan to speak of, and was instructed that he was to let others make the plans for once, by Grandpa. He always gets to do what he wants, and it was someone else's turn. We got through lunch with Beans picking at his food the way he always does, but not eating much. Bubby asked upwards of 20 times (in different ways) if we would pleeease go to a museum. Beans and museums aren't a good mix, so we were unable to honor his request, much to his dismay.
We went to a few places and did a bit of window shopping, while taking turns staying in the van with Beans, in the places he finds too noisy or overwhelming. When we arrived at the mall I thought it was a good place for him to finally get out a bit and enjoy his day. He typically likes the mall. However, he remembered he does not like escalators, and the first store we went into had one.So, I had to carry all 55 pounds of screaming Beans out of Sears to the van with onlookers wondering (I'm sure) if I was a kidnapper.
By the time all was said and done when we got home it was almost time for bed. The first thing everyone in my family does when we get home from a long day out is scatter to spend some time alone to regroup. After that it was late and definitely time for baths and bed.
It wasn't long after putting the boys to bed that I hear "Mom, Bean's stinky!" Which is pretty common. No big deal. Except this time Beans decided to get naked before pooping. It was a pooptastrophe and it was everywhere. I handed him off to Dad to get cleaned up and I scrubbed the carpet and the heating vent. Yes, he pooped on the heat register. We got it all cleaned up and put him back to bed at about 10:30. I had to go back in a time or two to tell him to get to bed, and give Bubby a drink. But, relatively quickly after there was silence. I thought Beans had settled in and gone to sleep, as it was late. My husband and I watch TV for awhile and decide it's time for bed at about 12:30.
.JPG)
The officer brings him in and explains that he was called to the next street over about an hour and a half ago because he was found trying to get into someone's house. They opened the door and let him in, then called the police. I so appreciate whoever did that! The officer brought him back to the police station for awhile, then decided to drive around the area he was found to see if any doors were open to indicate maybe where he had come from. That's when he came across us. He asked us if Beans was always moving like he was at the station and when he brought him home, and we verified that yes, he never is still. He always moves and is always into things. The officer said he couldn't keep up with him very well at the station. I'm guessing he thought that he could take him to the station and write up a report, and found out that was not possible in a room that's got much of anything in it. I'm sure he was knocking everything off of desks and shelves and trying to leave. Trying to eat any plants, paper, or whatever he could find. We live in a very small town, so I doubt there were other officers around to help much. There's not too many on duty at once. I think the officer had enough experience with Beans to have some empathy as to how he could be more than a handful. I was so worried that they'd think we were awful parents. He remarked how many gates we have in our house and extra locks. We thought we were on the up and up in safety. Guess beans found the weak spot.
We purchased window alarms yesterday. I don't know if they'll work or not, because he keeps removing the sensor, which does set the alarm off. I know when he removes it, but I don't want to have to be constantly reattaching the alarm everyday, and him getting his ears hurt by the shrill sound of it. I wish I could say he was more cognitively aware of the fact that removing the alarm is going to hurt his ears, but I'm not so sure he'll get that cause and effect. Maybe, he will. I'm still considering other safety measures for his window, and a few others he can get to. I will be doing an entry next on all of the safety precautions that we have done so far to help others (especially newly dxed autism parents) put together a safety kit. You can find that entry here.
This is far from over as Beans ability grows and he learns new skills, but remains unaware of danger. I am astonished that I have sent out e-mails for help in finding him a medic bracelet that he can wear, but not remove and I'm met with a lot of "i don't knows' from people like his autism specialist and developmental disability case manager. This has to be common in the autism population, especially those that are severely affected by their autism/and or intellectual disability. There is nothing in place at this time to help our children if they are lost. More about all of that in my next entry about safety. I am just glad that ours was a happy ending and my handsome guy was returned safely to us.
Wednesday, March 7, 2012
What The R Word Means To Me & My Family
Today is the official pledge day for Spread The Word To End The Word so I thought I'd like to do an entry about the R word and what it means to me, and my family.
As most of my readers know, I have two sons on the spectrum. Only one has an additional diagnosis of a cognitive delay. When Beans got this diagnosis at age two I assumed he may eventually grow out of it, or things might change. The developmental pediatrician didn't really explain to me what this meant, other then he was delayed in all areas. I didn't think too much about it at the time. I accepted him as he was, autism and all. Not a big deal.
Then one day about a year or so ago, I happened to be waiting with my kids in our regular pediatricians office. It was a lengthy kind wait. My eyes drifted over to Beans chart on the counter. It was considerably bigger than the other two kid's charts. I couldn't help but wonder what was inside. I assumed nothing of all that much interest. I decided to peek. I came across the developmental pediatrician's report. I quickly began scanning it with my eyes. I quickly felt my stomach drop as I saw the words 'mentally retarded', 'challenged', 'significant' and 'functioning' peppered though out the report. I could hear the doctor's voice coming down the hall, so I only got a small sampling of words before quickly shutting the folder before she entered the room. This was not the report the dev, pediatrician had sent me. It was not it at ALL. I knew my son was delayed. I knew that he seemed different then all of the other kids with autism I've met, but I had not thought that he was tagged as with an intellectual disability.
That night, I told my husband about it. He was nonplussed. He said he understood that the the day we had left the office 5 years ago. I guess the doctor had probably said it, gently, between the lines. Cushioning the truth the way many NTs like to have it. I was not able to infer this truth. I was not in denial, but I was not fully aware of our circumstances, either. It didn't really change much for me after the initial realization. Beans is still Beans.
I know that when most people use the R word they are usually doing it in a way that is making fun of themselves. I used to be one of those people. (Not proud of that, but there ya go.) I know that most decent people would never call a disabled person like Beans a derogatory name. I know most people aren't that awful. I also know that the language we use reflects on the people that hold certain labels and statuses in our society. Think about it this way. Think about every time you might be tempted to use the R word. Maybe you made a mistake and said "I'm so R worded." Or maybe something looked funny, or didn't work, or was wrong, or was defective. The R word = those things, and my son has an intellectual disability that technically means the R word. What if your name was replaced with the R word. What if when people saw something nonsensical they said "That's so ______" (fill in the blank with your name.) What would the public's perception of people named _____ be? Would who you are be affected by this? Would you like to be equated with all these 'bad' things? What if people said to you, "but I didn't say YOU were dumb. I said the X was dumb. Why do you take things so personally?" You would probably know that they DID say you were dm,b, bad, wrong whatever indirectly by using your name, who you are to describe something unwanted, or bad. This is what this sort of language feels like to those that are intellectually disabled, and the people that love them. This is why it's harmful.
I want to leave you with a short video that I took of my son last night. I was playing one of his favorite games with him, peek a boo. He just loves this game and could play forever. His smile and laugh is incredible. Think of this face every time you think of using the R word. Think of who you are hurting with your language. He is none of those negative things. He is beautiful.
*Sorry for the poor quality of the video. It's a new camera and I was just trying it out.
As most of my readers know, I have two sons on the spectrum. Only one has an additional diagnosis of a cognitive delay. When Beans got this diagnosis at age two I assumed he may eventually grow out of it, or things might change. The developmental pediatrician didn't really explain to me what this meant, other then he was delayed in all areas. I didn't think too much about it at the time. I accepted him as he was, autism and all. Not a big deal.
Then one day about a year or so ago, I happened to be waiting with my kids in our regular pediatricians office. It was a lengthy kind wait. My eyes drifted over to Beans chart on the counter. It was considerably bigger than the other two kid's charts. I couldn't help but wonder what was inside. I assumed nothing of all that much interest. I decided to peek. I came across the developmental pediatrician's report. I quickly began scanning it with my eyes. I quickly felt my stomach drop as I saw the words 'mentally retarded', 'challenged', 'significant' and 'functioning' peppered though out the report. I could hear the doctor's voice coming down the hall, so I only got a small sampling of words before quickly shutting the folder before she entered the room. This was not the report the dev, pediatrician had sent me. It was not it at ALL. I knew my son was delayed. I knew that he seemed different then all of the other kids with autism I've met, but I had not thought that he was tagged as with an intellectual disability.
That night, I told my husband about it. He was nonplussed. He said he understood that the the day we had left the office 5 years ago. I guess the doctor had probably said it, gently, between the lines. Cushioning the truth the way many NTs like to have it. I was not able to infer this truth. I was not in denial, but I was not fully aware of our circumstances, either. It didn't really change much for me after the initial realization. Beans is still Beans.
I know that when most people use the R word they are usually doing it in a way that is making fun of themselves. I used to be one of those people. (Not proud of that, but there ya go.) I know that most decent people would never call a disabled person like Beans a derogatory name. I know most people aren't that awful. I also know that the language we use reflects on the people that hold certain labels and statuses in our society. Think about it this way. Think about every time you might be tempted to use the R word. Maybe you made a mistake and said "I'm so R worded." Or maybe something looked funny, or didn't work, or was wrong, or was defective. The R word = those things, and my son has an intellectual disability that technically means the R word. What if your name was replaced with the R word. What if when people saw something nonsensical they said "That's so ______" (fill in the blank with your name.) What would the public's perception of people named _____ be? Would who you are be affected by this? Would you like to be equated with all these 'bad' things? What if people said to you, "but I didn't say YOU were dumb. I said the X was dumb. Why do you take things so personally?" You would probably know that they DID say you were dm,b, bad, wrong whatever indirectly by using your name, who you are to describe something unwanted, or bad. This is what this sort of language feels like to those that are intellectually disabled, and the people that love them. This is why it's harmful.
I want to leave you with a short video that I took of my son last night. I was playing one of his favorite games with him, peek a boo. He just loves this game and could play forever. His smile and laugh is incredible. Think of this face every time you think of using the R word. Think of who you are hurting with your language. He is none of those negative things. He is beautiful.
*Sorry for the poor quality of the video. It's a new camera and I was just trying it out.
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