As I'm writing this, I am watching a movie called "Miracle Run." It's a true story about a single mom raising her autistic twin sons. After getting the kiss off from her boyfriend ("It's not fair, I didn't sign up for this! I can't do this!"), and butting heads with the school district to the point of slapping them with legal papers, a special education instructor approaches her and works one on one with the boys and her, teaching them the basics...colors, shapes, sounds, words, speech, daily living skills. The boys eventually go on to high school, with one boy joining the cross country team and winning the championship and the other boy auditioning for a music school...over the phone! Their mother, Corinne Morgan, remarries (her handyman) and eventually starts The Miracle Run Foundation.
I love this movie.
I hate it too.
Don't get me wrong. It's a painfully accurate account of what no doubt so many of us experience as autism parents. Shock, grief, denial, bargaining, depression, and eventually acceptance. Judgmental glances and holier-than-thou comments made by sanctimoms who have no clue what you're going through. People who you think are in it for the long haul suddenly bail on you and leave you feeling even more alone and disillusioned. Schools stick your kids in a corner where they don't have to be dealt with. You are blamed because you didn't recognize the signs (neither did your accusers!). Life as you once knew it is suddenly turned upside down and you are made the master of juggling each and every detail, even the ones that seem small and insignificant. I can't make it through this movie without crying.
At the same time, I can't help but feel some pangs of guilt when I watch it. Why? Because Corinne seems nothing short of a rock star! A warrior mom! She fights for the lives of her children, sparring against the medical field as well as the educational system, settling for nothing less than a normal education and a normal life for her boys. Her efforts paid off. Both of these young men finished high school and went on to pursue college careers. She started a foundation. A foundation! How do you DO that?
Did I not do enough? Did I not try hard enough? Did I wait too long to have Matthew diagnosed because I was not ready to accept it? Did I just ignore what was right before me the entire time because I didn't want to be uncomfortable? Did my own missed diagnosis come into play at all during all of this?
I know I shouldn't compare myself to Corinne Morgan or to anyone else on or off of the spectrum because we all have our own journey, our own experiences. Sometimes though that is easier said than done.
I look at this remarkable woman and I see all that she accomplished. I see her trials (well, the trials represented on the small screen anyway) and I see what she and those boys came through and I can't help but ask myself, "What am I doing wrong?"
Sometimes on this journey of autism, not to mention life, I feel small. I feel insignificant. I sometimes wonder if anything I have shared or done has made any kind of impact or even the tiniest shred of difference. I know too that it's not about me. I guess I just want to arrive at the end of my walk here on earth and know that somehow, someway, my life made a difference.
That's all I want.
To make a difference.
Saturday, November 30, 2013
Tuesday, November 26, 2013
A Letter To The President
Earlier in the week a story came across my news feed about a 13-year-old autistic boy who has been bullied. Physically bullied. Verbally bullied. His autism was even being mocked online.
The story went on to say that the boy's school authorities had been flooded with 100 or more e-mails from parents....DEFENDING THE BULLIES!!!!!!!!
Wait a minute....
Let me see if I can get my head around this.....
Here is a boy, a 13-year-old boy with autism.
His physical movements are being mocked online for all of the world to see. He's been pushed and shoved and who knows what else!
Here is a quote from the lips of the young boy: “People tell me to run into things and I don’t really like it,” said Null, who also hasADHD . “And I tell them that I don’t want to and they just laugh at me, whenever I do it.” (http://thinkprogress.org/health/2013/11/21/2979471/autism-bullying-iowa-school/)
And here is a quote from one of the parents who are in defense of the bullies. I still can't get over this! “Three-fourths of this stuff he brings on himself,” he said, “and probably a fourth of it is bullying that shouldn’t be going on.” One implied that he was asking for it: “This kid has done things to get people mad that I think he could probably control.” ( http://thinkprogress.org/health/2013/11/21/2979471/autism-bullying-iowa-school/)
In a nutshell--"he was asking for it!"
Having been through this type of scenario myself, as a kid and as a parent, I decided to do some looking into the stats and numbers of bullying among the autism community. What I learned saddened me. What saddens me even more is the ignorance that continues to be shown toward autistic individuals. Autism and its related disorders are the hand(s) dealt to families throughout the world. It does not give a rat's hat whether you pull in a six figure income, what your race, color, creed, religion, etc. are. What your last name is does not come in to play. The cause or causes for autism will no doubt be a bone of contention long after I am just a memory. Autism is not a choice. We the parents did not choose it. And without a doubt the individuals with autism did not choose it!
This is a little of what I learned. 63% of students with autism are bullied. These are kids ages 6-15. Kids like this young man as well as my son who deal with ADHD on top of ASD are more likely to be bullied. 40%....40% of ASD children have been punished by administration as well as school staff for meltdowns or outbursts that have followed bullying. 40%!!!!!
Zero tolerance?
Yeah...right....for who?
I sat down and put these facts, figures, and issues in a letter to President Obama. I pleaded with him as a parent as well as an American. I pleaded with him to try and imagine if one of his daughters were victimized for something she could not control or help. I pleaded with him to try and imagine the pain and helplessness he would feel watching his babies hurting. I just plain pleaded with him.
It has to stop!
The story went on to say that the boy's school authorities had been flooded with 100 or more e-mails from parents....DEFENDING THE BULLIES!!!!!!!!
Wait a minute....
Let me see if I can get my head around this.....
Here is a boy, a 13-year-old boy with autism.
His physical movements are being mocked online for all of the world to see. He's been pushed and shoved and who knows what else!
Here is a quote from the lips of the young boy: “People tell me to run into things and I don’t really like it,” said Null, who also has
And here is a quote from one of the parents who are in defense of the bullies. I still can't get over this! “Three-fourths of this stuff he brings on himself,” he said, “and probably a fourth of it is bullying that shouldn’t be going on.” One implied that he was asking for it: “This kid has done things to get people mad that I think he could probably control.” ( http://thinkprogress.org/health/2013/11/21/2979471/autism-bullying-iowa-school/)
In a nutshell--"he was asking for it!"
Having been through this type of scenario myself, as a kid and as a parent, I decided to do some looking into the stats and numbers of bullying among the autism community. What I learned saddened me. What saddens me even more is the ignorance that continues to be shown toward autistic individuals. Autism and its related disorders are the hand(s) dealt to families throughout the world. It does not give a rat's hat whether you pull in a six figure income, what your race, color, creed, religion, etc. are. What your last name is does not come in to play. The cause or causes for autism will no doubt be a bone of contention long after I am just a memory. Autism is not a choice. We the parents did not choose it. And without a doubt the individuals with autism did not choose it!
This is a little of what I learned. 63% of students with autism are bullied. These are kids ages 6-15. Kids like this young man as well as my son who deal with ADHD on top of ASD are more likely to be bullied. 40%....40% of ASD children have been punished by administration as well as school staff for meltdowns or outbursts that have followed bullying. 40%!!!!!
Zero tolerance?
Yeah...right....for who?
I sat down and put these facts, figures, and issues in a letter to President Obama. I pleaded with him as a parent as well as an American. I pleaded with him to try and imagine if one of his daughters were victimized for something she could not control or help. I pleaded with him to try and imagine the pain and helplessness he would feel watching his babies hurting. I just plain pleaded with him.
It has to stop!
Monday, November 18, 2013
When Momma Has A Meltdown
This week has been rough.
The thing that I haven't been able to put my finger on is exactly why this week has been rough. Life has happened like it does on most days.
Oh! Maybe that's it!
Why is it that most days life can go on and on with its foibles and frailties and it doesn't seem to affect you while other days a butterfly breaking wind is enough to send you plummeting face first into the abyss?
This past week has been my butterfly breaking wind.
We've had some struggles as of late. Financial struggles that, while I don't wish to lay out in graphic detail here, are to the point now where some decision making has to be done. Rent that is more than 50% of our monthly income, utilities (specifically electricity and heating) that are more than your average car payment, a vehicle that has been coming apart little by little, gas for the aforementioned vehicle so that the fam and I can continue to get back and forth as needed, and the ever looming possibility that there is to be a move in our not too distant future. These things, conspired with a hubby that's been knocked for a loop with a nasty sinus infection, getting the oldest mancub prepped and ready to leave for school in about another week and a half , me fighting my own brand of cold, and two younger kids that seem to think it's a day without orange juice if they are not at each other's throats from the time their feet hit the floor at 6:45 each morning until 9:00 at night when it's time for them to head upstairs to bed, have just worn the fabric of each one of my nerves to the brink of nonexistence. And of course, on the work days, what kind of a day would it be if either the customers or the co-workers weren't treating you like you're a complete and total moron? Anyone? Yeah, I have no idea either!
And then, as if all of this isn't enough, on Thursday I got a call from the kids' elementary school. The call that no parent wants to get. The call that says, "Your kids have head lice!" Talk about the cherry on the cake of what was otherwise a red letter week! Shampoos, sprays, vacuuming and washing everything that could be squeezed into the washer/dryer, nit combs and Cheyenne screaming every step of the way. Oh yeah, good times!
Suffice it to say, I ended up having a meltdown that made anything my boys ever whipped up look like a Sunday School picnic. I screamed. I cursed. I wept. I pulled tighter and tighter within myself. Every nerve in my body was wide awake and felt like they were on fire. At that moment I was ugly. I was whipped. I was defeated.
When I was learning about my boys' diagnoses, I read a lot about meltdowns before I actually witnessed them and it didn't take long to decipher what was a meltdown and what was a tantrum. I learned what to do to draw them out and bring them back. I learned how to redirect them. I never learned what to do when Momma has a meltdown. Truly this had not been my first one. I'd had many before and I'm sure I'll have even more after. This one, however, just shook me.
Perhaps I'm being too hard on myself. I sometimes forget I'm not called to be Super Girl, Wonder Woman, or any other brand of super hero. I'm just supposed to do the best I can. Some days, more than I care to think about, that doesn't seem like enough.
I get tired of wearing my poker face when inside I feel like raw hamburger. I get tired of smiling through my problems when want I want to do is sob in a corner somewhere. I get tired of being brave; sometimes I want to chuck it all and run away. I grow weary of opinions and judgments that come my way and the ones sending them my way don't know thing one as to why I'm where I'm at or why I do or don't do things a certain way. I just get tired.
The thing that I haven't been able to put my finger on is exactly why this week has been rough. Life has happened like it does on most days.
Oh! Maybe that's it!
Why is it that most days life can go on and on with its foibles and frailties and it doesn't seem to affect you while other days a butterfly breaking wind is enough to send you plummeting face first into the abyss?
This past week has been my butterfly breaking wind.
We've had some struggles as of late. Financial struggles that, while I don't wish to lay out in graphic detail here, are to the point now where some decision making has to be done. Rent that is more than 50% of our monthly income, utilities (specifically electricity and heating) that are more than your average car payment, a vehicle that has been coming apart little by little, gas for the aforementioned vehicle so that the fam and I can continue to get back and forth as needed, and the ever looming possibility that there is to be a move in our not too distant future. These things, conspired with a hubby that's been knocked for a loop with a nasty sinus infection, getting the oldest mancub prepped and ready to leave for school in about another week and a half , me fighting my own brand of cold, and two younger kids that seem to think it's a day without orange juice if they are not at each other's throats from the time their feet hit the floor at 6:45 each morning until 9:00 at night when it's time for them to head upstairs to bed, have just worn the fabric of each one of my nerves to the brink of nonexistence. And of course, on the work days, what kind of a day would it be if either the customers or the co-workers weren't treating you like you're a complete and total moron? Anyone? Yeah, I have no idea either!
And then, as if all of this isn't enough, on Thursday I got a call from the kids' elementary school. The call that no parent wants to get. The call that says, "Your kids have head lice!" Talk about the cherry on the cake of what was otherwise a red letter week! Shampoos, sprays, vacuuming and washing everything that could be squeezed into the washer/dryer, nit combs and Cheyenne screaming every step of the way. Oh yeah, good times!
Suffice it to say, I ended up having a meltdown that made anything my boys ever whipped up look like a Sunday School picnic. I screamed. I cursed. I wept. I pulled tighter and tighter within myself. Every nerve in my body was wide awake and felt like they were on fire. At that moment I was ugly. I was whipped. I was defeated.
When I was learning about my boys' diagnoses, I read a lot about meltdowns before I actually witnessed them and it didn't take long to decipher what was a meltdown and what was a tantrum. I learned what to do to draw them out and bring them back. I learned how to redirect them. I never learned what to do when Momma has a meltdown. Truly this had not been my first one. I'd had many before and I'm sure I'll have even more after. This one, however, just shook me.
Perhaps I'm being too hard on myself. I sometimes forget I'm not called to be Super Girl, Wonder Woman, or any other brand of super hero. I'm just supposed to do the best I can. Some days, more than I care to think about, that doesn't seem like enough.
I get tired of wearing my poker face when inside I feel like raw hamburger. I get tired of smiling through my problems when want I want to do is sob in a corner somewhere. I get tired of being brave; sometimes I want to chuck it all and run away. I grow weary of opinions and judgments that come my way and the ones sending them my way don't know thing one as to why I'm where I'm at or why I do or don't do things a certain way. I just get tired.
Monday, November 11, 2013
Giving Thanks Part 1
I woke up this morning to snow. Snow trickling down and just lightly dusting the ground and tree tops. Ugh! I am so not ready for winter. The two younger kids need new snow duds. The van needs better tires. And I just need to not be out in it.
Well...that sounded good....
I really do love this time of year though. I love the fresh crispness of the air and settling in with hot coffee (or taking it on the go as I many times have to do). The Gaslight District in Petoskey is decking the halls as they do and to say it's beautiful is beyond description. Leaves crunch beneath my feet. Trees and plants have surrendered themselves for another year. Some days it all seems cold and lonely. Other days it's like the world is resting.
November is the month of hoodies, hot chocolate, pumpkin pies and apple cider. It is the month of turkey dinners, overly crowded houses, and getting up at dark thirty the next day and literally battling total strangers for that "can't-miss-gotta-have" sale. It's also the month of giving thanks. It's supposed to be anyway. I just wonder why one day out of the year is set apart to be thankful? Shouldn't thankfulness be something that we do daily?
Each year at this time I challenge myself to find at least one thing each day for which I am thankful. Some days are easier than others. Some days it's easy breezy to say thanks. Other days are a struggle and I have to think long and hard for something to be thankful for. Life is hard. Times are tough. It just seems like there is no rest to be had and no end in sight. What is there to be thankful for today?
And so I am challenging myself again to take a moment each day to say thanks. What will I find at the end of that challenge?
That's.....another posting!
Well...that sounded good....
I really do love this time of year though. I love the fresh crispness of the air and settling in with hot coffee (or taking it on the go as I many times have to do). The Gaslight District in Petoskey is decking the halls as they do and to say it's beautiful is beyond description. Leaves crunch beneath my feet. Trees and plants have surrendered themselves for another year. Some days it all seems cold and lonely. Other days it's like the world is resting.
November is the month of hoodies, hot chocolate, pumpkin pies and apple cider. It is the month of turkey dinners, overly crowded houses, and getting up at dark thirty the next day and literally battling total strangers for that "can't-miss-gotta-have" sale. It's also the month of giving thanks. It's supposed to be anyway. I just wonder why one day out of the year is set apart to be thankful? Shouldn't thankfulness be something that we do daily?
Each year at this time I challenge myself to find at least one thing each day for which I am thankful. Some days are easier than others. Some days it's easy breezy to say thanks. Other days are a struggle and I have to think long and hard for something to be thankful for. Life is hard. Times are tough. It just seems like there is no rest to be had and no end in sight. What is there to be thankful for today?
And so I am challenging myself again to take a moment each day to say thanks. What will I find at the end of that challenge?
That's.....another posting!
Subscribe to:
Posts (Atom)